# Stephen... Remicade now...



## Tesscorm

Starting a new thread on Stephen's experiences with Remicade (hopefully, they'll all be good!!!)

So far, he's had two infusions and all has gone well.  No reactions during infusion and no side effects afterwards....  _I think...  _he seems to look a bit pale immediately after the infusion and it seems he's complained of being a bit more tired lately but not sure if it's related to the remicade or if it's that he's started working full time (plus 1 hr commute) but is only just beginning to adjust his 'teen' late night hours. (Think he's beginning to get why us 'old folks' go to bed early! :lol

But, all in all, all seems to be going well.  

Can someone help me with a couple of questions? :ytongue:

Are allergic reactions related to the build-up of antibodies?  If he begins to build antibodies, does this make him more likely to have a reaction during infusion (or at any time)?

And, how will we know if he's building antibodies?  Is this tested regularly in bloodwork done at every infusion or is it only the Prometheus test that shows antibodies.  

If you develop antibodies, is it possible that you have no signs of having built antibodies but the remicade just won't work??? 

Thanks! :rosette2:


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## my little penguin

Takes a while to build antibodies typically a few infusions.
Prometheus test Haca is the only place to get them measured.
Having antibodies increases the likelyhood of a reaction and the drug losing effectiveness.
You can have a reaction up to two weeks after an infusion 
Acute reactions occur within twenty-four hours.
You can still have a reaction without antibodies .
DS does not have antibodies ( we tested before last infusion)
But he still had a reaction.


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## Clash

MLP or one of the others, will have to answer about the allergic reaction part because I'm not certain but we just went through the antibodies testing.

It is a blood test that tests for antibodies but it has to be sent off and usually takes a week and a half to get back. In our situation, we only tested for antibodies when C was having the joint pain so soon after a remicade infusion. I don't imagine many CD'ers have the antibodies tested for on a regular basis since it is a fairly expensive test and alot of ins companies don't cover it in the US. But it could be different in Canada with your healthcare system.


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## Farmwife

I glad so far so good for him.:hug:
Does he seem fine with it all?


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## Tesscorm

So you could have antibodies and remicade could be losing effectiveness but NOT have a reaction.  In this case, as Stephen has few external symptoms and his recent bloodwork was completely within normal ranges (except slightly low HGB) even with the inflammation present, would an MRE be the only way to test effectiveness?  

MLP, I've never seen it mentioned here but, just in case...   The analyphylactic reaction can only happen during (or immediately following) infusion, right?

Clash, same here re the test - very expensive.  Not sure if our insurance would cover it but I know my friend has had to pay a couple of times to have her daughter tested.


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## Tesscorm

FW - yes, Stephen's fine with it.  Said it's actually relaxing, goes in, watches a movie, etc.  He got home from Tuesday's (2nd) infusion at 6:30pm, was starving, ate and went out to a pub/wing restaurant to watch a game on the big screen.  Seemed totally fine.

He was a bit annoyed that because of the time he has to take off from work for the 3 loading doses and follow up apptmt, he couldn't take tomorrow off for a 'long' weekend away but, that's life...  Told him crohns or not, we all have to deal with inconveniences and sacrifices sometimes... :emot-nyd:  I don't like to discount or play down his issues but things could be a lot worse!

But, now MLP has me worrying...  _You can have a reaction up to two weeks after an infusion_  ...he's going to be away with friends this weekend! :yfaint:


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## my little penguin

Tess 
The infusion clinic should have given him papers stating what to watch for during the two week period .
I think the most serious reactions tend to occur within two hours but can occur within twenty four delayed reactions tend to be less serious can occur up to two weeks later some may or may not need treated.
Please find his list or call the infusion center for what to watch for and when to call


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## Tesscorm

Thanks MLP...  will ask him if he received a list.  The pharmacist called me yesterday with lots of info but only mentioned that he might have flu-like symptoms, fatigue, itchiness, rash following the infusion but they should go away within a day, and that as he's had two infusions with no reactions, he's less likely to have them.  She only mentioned that any fever or 'coloured' mucous/phlegm warrants a call to the doctor.

If Stephen doesn't have the list, I'll give the pharmacist or infusion centre a call...


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## Clash

Tesscorm, you started a thread a while back that I posted the reaction sheet we received from the IV lab. You might go back and look at it to see the reactions per time frame. 

C's GI said the most concerning time for serious reaction is during the infusion and then the 24 hour period afterward.

Some of the reactions listed on that sheet I posted play into the building of antibodies or burning through Remi too fast. For instance if you start to get joint pain 2 weeks after the infusion they want you to report because it may be that he is burning through the remicade too fast or is developing antibodies and not so much a "reaction" to the remicade.


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## Tesscorm

That's right!  Sorry, Clash...  forgot about that! :facepalm:  I actually showed it to Stephen and hubby at the time and now completely forgot you'd posted all that info! :ybatty:  Too much wine :lol: (or maybe not enough! )


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## kimmidwife

Tess,
Caitlyn's antibodies were negative and she then had an anaphylactic reaction at the second dose. I guess that means antibodies don't reflect possible allergic reactions. We only tested antibodies because she was on remicade and then stopped it and we restarted it a year later.


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## Tesscorm

Thanks Kim.

So....  seems antibodies, allergic reactions and effectivenes are like all else with with IBD - it might, usually doesn't, sometimes it does, perhaps it will, likelihood is, for some people... :facepalm:

Why am I not surprised!?!?! :angry-banghead:


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## Sascot

Well that sounds totally confusing!  Glad things are going well - hope they continue to do so


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## Johnnysmom

Tesscorm said:


> Thanks Kim.
> 
> So....  seems antibodies, allergic reactions and effectivenes are like all else with with IBD - it might, usually doesn't, sometimes it does, perhaps it will, likelihood is, for some people... :facepalm:
> 
> Why am I not surprised!?!?! :angry-banghead:


Well that seems about right Tess!!!   Why is it that us overly protective, anal rententive moms are the ones who get stuck dealing with a disease that contains no logic?!?:ybatty:


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## Tesscorm

Johnnysmom said:


> Well that seems about right Tess!!!   Why is it that us overly protective, anal rententive moms are the ones who get stuck dealing with a disease that contains no logic?!?:ybatty:


Because we're the only ones who will still try to make any sense of it! :study: :study: :study:

:ylol2:


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## upsetmom

Glad things are going well..


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## Dexky

Tesscorm said:


> Thanks Kim.
> 
> So....  seems antibodies, allergic reactions and effectivenes are like all else with with IBD - it might, usually doesn't, sometimes it does, perhaps it will, likelihood is, for some people... :facepalm:
> 
> Why am I not surprised!?!?! :angry-banghead:


That may be the most brilliant quote I've ever read about IBD!!


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## Farmwife

Tesscorm said:


> it might, usually doesn't, sometimes it does, perhaps it will, likelihood is, for some people... :facepalm:


I sort of, kind of, maybe, most likely understand what you mean.:yrolleyes:

:ghug:


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## LISATHEGIRLS

My husband is starting Remicade this afternoon.  Been in the hospital for 7 days on iv steroids and isn't responding.  This is his first flare up that has landed him in the hospital.  Diagnosed 15 years ago and has only had 3 mild flares that would be put in remission with oral prednisone...  
Doc wants to start the Remicade already.  Does this seem premature?  Seems alot of Crohns sufferers endure much more before starting such an extreme treatment option.  Any feed back would be appreciated!!
THANK YOU!


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## Tesscorm

LISATHEGIRLS - I think some of it depends on the GI's comfort level with 'inflammation' - I think this is the case with my son.

My son had only one real flare which was brought under control with exclusive enteral nutrition (temporary liquid only diet), since then he has been using EN only as a supplement.  However, when we transferred from a pediatric to adult GI, his new GI was adamant that the continued inflammation (although it wasn't causing symptoms) would eventually cause further problems, possibly surgery.  To avoid that, he strongly recommended remicade.

While I do not like the idea of using remicade, I find there are very few medications for crohns that are much safer (Low Dose Naltrexone being the exception, however, most GIs do not believe there is enough info to make it a reliable option???  Not sure I agree but...) and the consequences of untreated crohns can be very severe as well.

Is your husband's GI concerned about inflammation?  Have you discussed other medication options with the GI and his reasons for choosing remicade?

Please also look under the Treatment subforum, there are sections there on all med options.

Good luck! :ghug:


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## LISATHEGIRLS

Tesscorm said:


> LISATHEGIRLS - I think some of it depends on the GI's comfort level with 'inflammation' - I think this is the case with my son.
> 
> My son had only one real flare which was brought under control with exclusive enteral nutrition (temporary liquid only diet), since then he has been using EN only as a supplement.  However, when we transferred from a pediatric to adult GI, his new GI was adamant that the continued inflammation (although it wasn't causing symptoms) would eventually cause further problems, possibly surgery.  To avoid that, he strongly recommended remicade.
> 
> While I do not like the idea of using remicade, I find there are very few medications for crohns that are much safer (Low Dose Naltrexone being the exception, however, most GIs do not believe there isn't enough info to make it a reliable option???  Not sure I agree but...) and the consequences of untreated crohns can be very severe as well.
> 
> Is your husband's GI concerned about inflammation?  Have you discussed other medication options with the GI and his reasons for choosing remicade?
> 
> Please also look under the Treatment subforum, there are sections there on all med options.
> 
> Good luck! :ghug:


Thanks for the info.  Yes, has a great deal of inflammation in both the upper and lower intestines.  With this being his first major flare we really didn't know how to handle it.  Since we waited so long for him to get checked out his cat scan showed a good amount of inflammation.  He had a colonoscopy two and half weeks prior to his hospitalization and his colon was pretty bad then so the started the oral prednisone.  He travelled for work, we went on our family vacation, he was miserable and we kept hoping the oral prednisone would work as it did in the past.  Not realizing the damage we were doing putting off going in to see the doc.  He had a decent day yesterday with little pain, but then passed some clots after dinner.  The clots turned into bright red blood with severe pain.  Amazed how he seemed to be going in the right direction and then WHAMO back to square one.  
Anyhoo, they transferred him from a med surg floor to oncology and did his first infusion this afternoon.  Hoping for the best.
Has your son started on the Remicade yet?  Or are you still researching other options?
Thank You!!!
Lisa


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## Tesscorm

My son has had two infusions.  I did as much research as I possibly could! :ywow:  But his GI very much recommended remicade and my son, now 18, was concerned at the possibility of surgery and wanted to go on remicade to minimize that risk.  At 18, I have to respect his decision; I couldn't take on the responsibility of convincing him not to and then have him face surgery.  Although, as I said above, there are side effects/risks with any of the immunosuppressants (remicade, humira, 6MP, Imuran, Azathioprine, methotrexate, etc.) so it just made sense to go with the one the GI was most comfortable with.

I would very much have preferred the opportunity to try Low Dose Naltrexone.  There are quite a few people here who have had success with it and it has minimal side effects but our GI did not believe there was enough data to back it up and wouldn't prescribe it.  There's quite a bit of info on LDN in the treatment section.  

But, keep in mind that if your husband has quite a bit of inflammation that even pred was unable to control, LDN may not be enough to get it under control and you would be risking further damage.    These are always tough choices! :ghug:


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## Tesscorm

Another question re remicade :redface:

Is there a test that tests for therapeutic levels of remicade?  Infusions at 8 week intervals and 5 ml(?)/kg seems to be the standard dose but how do they know this is accurate for everyone?  I assume trials/time have shown this is dosage and schedule that works for 'most' people but there are lots who have had their dosages increased and/or schedules tightened.  I think, for the most part, a change in dosage seems to simply be a response to the presence of symptoms.

But, is there no standard blood test to measure levels of remicade in your system?  Or can this also only be tested by Prometheus tests?


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## kimmidwife

I think there is such a test although I dont know how frequently it is used. I am pretty sure the first time Caitlyn was on remicade she had it checked when it wasnt working for her.


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## Clash

Tesscorm yes the serum levels test is part of the Prometheus tests usually along with HACA levels, they generally don't test levels unless symptoms are present but since Stephen was feeling good to begin with you might request the levels test. You would do it ahead of time so as to test at the right time after infusion, like right before next infusion or there about.


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## Tesscorm

Thanks Kim, Clash.  I guess, if it's a prometheus test, it's not tested on a regular basis... and there's a (likely) chance it's not covered by our insurance???  I imagine the GI will know if it's generally covered by insurance... will ask at our next apptmt.

Good luck at your apptmt today, Clash! :thumright:


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## LISATHEGIRLS

Thanks to all for the info!!  Hubby update...
First dose of remicade while still admitted in hospital on Friday, discharged last Tuesday 3 days after infusion.  Showed no response to the drug, however, came down with a terrible cough (yellow mucous) and then a fever by Thursday at home.  By Friday evening we headed back to the er.  Seems he picked up bacterial pnuemonia.  On doxycycline for 10 days.  Guessing that will delay his next scheduled infusion this Friday.  On top of the pnuemonia, also low sodium/dehydrated and hemoglobin is 10.  He is miserable!  I hope this isn't what we have to look forward to!


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## Tesscorm

Had Stephen's follow-up appointment today...  first one since starting remicade.

So, ALL IS GOOD!   CRP is the lowest it's ever been at 0.3 (before starting remicade it was 6.5).

As far as follow-up, he said he would like to rescope in a few months but we'll see how Stephen's doing, how his school schedule looks and then decide when the scope can be scheduled.  In the meantime, as his labs don't show alot (although CRP did drop...), he will be doing another MRE in August before Stephen leaves for university.

He also wants to  test for remicade levels and antibodies a day or two before his next infusion.

I didn't end up asking about the fecal calprotectin or the INR as he pretty much covered everything with the scope, MRE and prometheus test!

A bit of a surprise...  I told him I was going to start reducing the amount of EN that Stephen ingests so that he is done with Tolerex by June/July and, in place of the Tolerex, he would drink a couple of Boost shakes daily (not the equivalent but just a nutritional 'boost').  When Stephen first transferred to this GI, he was fairly dismissive of the EN and said that the only benefit he was getting from it was nutrition (no healing, etc.).  Surprisingly, today, he said he didn't see reason to reduce it yet, while he's sure the CRP improvement is due to the remicade, the EN could be helping it along so it could only 'help' if he does keep the EN until he leaves for university (or as close to him leaving as possible)! :yrolleyes:  He assumed Stephen was tired of the tube so suggested Modulen but the tube isn't the issue at all, I was actually reducing it for almost the same reason he wants to keep it going...  I didn't want to take Stephen off it just before he leaves only to find out, once he's away at school, that the EN was having more of an impact than we realized.  He wasn't absolutely adamant about keeping the same dosage, just thought it would be a good idea.  So, we'll keep it for now...

I had also wanted to take Stephen off nexium (he's been on it since May 2011)...  he takes one nexium every night when he uses the NG tube (5 nights/wk).  Stephen has no problem with heartburn on the weekend (when he doesn't use the tube) but finds that he does have heartburn if he uses the tube but doesn't take nexium. (The flap between esophagus and stomach stays open a bit and allows acid to escape.)  For now, I guess we'll continue with the nexium.  The scope did show a little of redness at this area of the stomach, GI said it probably isn't bad enough to be causing heartburn, etc. and thinks it may be irritation from the tube... but thought it was okay to continue as is for now.

Next follow up will be after the MRE and before Stephen leaves for school. :thumright:


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## my little penguin

Glad you got such a good report.


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## S mom

Sounds like great news and all in all a good appointment. Here's to smooth sailing from now on!!


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## CarolinAlaska

Glad to hear the Remicade is helping so much and that Stephen will be at a good place when he is ready to go to school in the fall.


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## Dexky

I may have missed it Tess, but how far away is Stephen going to be?  

Good to read the great report


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## Tesscorm

At most, only a 2-3 hour drive.  Our hope is that we can stay with the same GI and infusion centre.  We briefly discussed what Stephen should do if he experiences any symptoms and GI was only concerned if he develops an infection/fever and said, if he can't get to the GI or regular GP, Stephen should not wait and should go to a doctor or ER to have it taken looked at.

Just for anyone's interest, we also discussed being immunosuppressed, etc.  GI said that yes, being immunosuppressed does put you at greater risk for infections/complications and that it is important to check but it does not necessarily make you more susceptible to catching something.  So, you're not likely to catch more colds, flus, etc. but you must be careful if you DO catch something.  A bit more than basic hygiene is a good idea (wash hands more frequently, cover up cuts, etc.) but that, with all the clinic's patients, he sees only one or two infections that need any treatment in a year.

Of course TODAY, Stephen tells me that he's had a cough that won't go away! :facepalm:  It's tough when they're this age because often you don't see them for long periods (ie home for a quick dinner and gone till late)...  but he's saying he has no other cold symptoms, just the cough.  But, since a little boy, he's always tended to have a cough or needed to clear his throat (I've read about a crohn's cough??), so (even with all the talk above about vigilance :yfaint I think I'm going to wait a few days...  but, wish he'd mentioned this YESTERDAY.


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## S mom

Uggh, it figures, eh?  lol

Thanks for the info on immunosuppressants - a little reassuring, I guess?


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## my little penguin

We were told the same and so far almost two years later it holds to be true.
WE do use prescription strength " cut scrapes "creme.
As far as infection - anything above a cold we call GI right away just to keep in the loop.


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## Tesscorm

my little penguin said:


> As far as infection - anything above a cold we call GI right away just to keep in the loop.


Yes, that how it seemed with Stephen's GI.  Sort of surprised me because he seems to be a laid back, relaxed guy so wasn't expecting him to be so firm on infections/fevers.  But, glad he was... made Stephen realize it's not just 'a mom thing'! :yrolleyes:


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## DustyKat

It so good to hear all is going well Tess.  Long may it continue! :mademyday: 

I don't wish to cause you anxiety, :wink:, but when will Stephen leave for uni? 

Dusty. :heart:


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## Tesscorm

Assuming he receives an offer from his first choice (the only one he hasn't received an offer from yet!), he will be leaving at the end of August.   If not, it's still a bit up in the air, may go to another city (less than two hours away) or may even stay in Toronto???

Honestly, my biggest worry is 'what will he eat?'  At home, at least we can control those meals, otherwise it's...   'I'll have the triple pork poutine with extra cheese and bacon!  Throw some wings on the side but please don't put the parsley on the plate - have to watch veggies, etc., I have crohns!'  :yfaint:

Otherwise, I am excited for him and he is soooooo ready to move on! :thumright:


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## DustyKat

:lol: Tess! 

Oh boy, I so know the gauntlet of emotions when they leave the nest! Love, fear, sadness, excitement, pride, you name it I felt it! :lol: And that was only Sarah...Matt is still here! :yfaint: 

Dusty. xxx


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## Dexky

My oldest starts uni this fall too Tess.  She will be staying in town but when asked if she wouldn't rather commute, she politely declined!!  I remember feeling that way…I remember a lot…I think I'm gonna hire a PI to trail her!!!


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## DustyKat

I would too Dex with all those rednecks running loose! Ahahahaha.


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## Tesscorm

:lol:  It's definitely as big a step for us parents as it is for the kids! :eek2:  But, as you said, Dusty, along with the worry, sadness, etc. there are so many good emotions too...  pride, excitement, etc.

Dex, it's the daughters who will be the death of us!  My daughter had zero interest in going out of town but now I am constantly worried as she has night classes downtown, goes clubbing with friends, comes home at 2:30am, etc., etc....  living in denial_ (of course she's home by 11 each night!)_ would be bliss!! :ylol:


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## DustyKat

Ah yes Tess! The bliss of what you don't know doesn't hurt you. That is so me with Sarah. Worry, worry, worry about Sarah from the time the car leaves Sydney and arrives back again, then...out of sight out of mind...well not quite but you know what I mean! :lol: 

Matt...well Matt is still under our roof but hibernates in his cave. My only worry with him is that he stays up at the uni library till all hours of the evening! :yfaint: 

Dusty.


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## Dexky

Yeah, I don't know Tess!  I think I'd rather she live on campus than stay home and do as she pleases.  At least I can pretend she's behaving if I don't know first hand 

She'll hold her own with the rednecks Dusty!  While the other girls wear their short skirts and Toms to school, she's been wearing cowboy boots and bluejeans with a giant rhinestone belt buckle for years


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## crohnsinct

SSSHHH!  Nobody wake Dusty.  She is dreaming....Matt is in the library till the wee hours :rof::rof::rof:

Dex: cowboy boots, blue jeans and a rhinestone belt is hot!  All those city boys are going to that school hoping to meet a girl like that!  :eek2:

My girl goes to school 40 minutes from home.  She stays on campus. She stays in  most nights.  When I call her and she is home I am the one asking wth for?  Why aren't you out? That apple fell far from the tree.  Another orchard even.  Now O is another story.


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## DustyKat

Bugger off cic! Don't you be bursting my bubble! 

	
	
		
		
	


	





Love ya! :lol:

Dusty. xxx


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## crohnsinct

Aw you think I am #1 that is so sweet!


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## DustyKat

Always my numero uno cic! :kiss:


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## kimmidwife

Tess,
I know how you feel about them leaving the nest. My oldest is planning to join the military this fall. I am excited for him and worried as well. It will be hard to let go but I know it will be good for him. It is tough to let them fly the nest!


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## Tesscorm

Absolutely, Kim, along with the worry, pride, etc., I think there's just plain sadness that they're moving one step further away from being your baby ... and taking one big step towards adulthood and independence!   My kids are close in age (13 months); great in many aspects but not in others...  high school, driver's licences, university, independence...  uggh, I barely adjust to the first reaching that milesone, when the other hits me!

But, just to not start all the parents here with little children worrying about the future... , there's no greater pride than seeing your baby become a wonderful adult! :thumright:


Dusty - there most certainly is some truth in 





> out of sight out of mind...


...  when Em stays at a friend's residence downtown, I barely worry ...  cuz, of course, they spend Saturday nights watching a movie and ordering in a pizza! 

Dex - sorry, I'm with CIC...  jeans and cowboy boots...  She'll have those northern city boys drooling!


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## araceli

I am so lucky (I think) She wants me to move with her when she goes to college. So we are moving. I am not selling my home just in case she kicks us out.


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## Dexky

Tesscorm said:


> Dex - sorry, I'm with CIC...  jeans and cowboy boots...  She'll have those northern city boys drooling!


Oh helllll no!!  That's not what I wanted to hear!!


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## DustyKat

Get ya gun Dex! 

	
	
		
		
	


	





Dusty. :rof:


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## Clash

Tess, Dusty I am the same as you two with my daughter. I worry from the time she leaves here and heads to her apt but once she is there all is well. 

The Hubby follows her on twitter so I get these little snippets of her college life and since the Vine app has become popular all I can say is she is definitely trying to prove out the "All work and no play...." theory!!:yfaint:


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## Tesscorm

I need some help, some info...  I found a voicemail today from the infusion centre saying that they 'received a new directive that Stephen's remicade is now to be at 6 weeks and to call to reschedule'!  Stephen had the prometheus test done on June 5 (morning of his last infusion), I am assuming that the test showed lower than acceptable levels of remicade???  I assume if it showed antibodies, he would be adding mtx or premedicating with a steroid rather than increasing the frequency, right?

Don't want to do this without speaking with the GI.  Am I wrong to expect a discussion before just changing the schedule?  At the very least, I'm want to wait to see what the MRE shows on Aug. 2 (his next 8 week infusion is July 31).

Before starting remicade, Stephen's CRP was 6.5, the results from the blood taken at the 3rd infusion showed CRP was down to 0.3.  But, unfortunately, I don't have the results from subsequent tests (yet - am requesting them tomorrow).

Any thoughts?  What do I need to ask the GI?

But, what I'm wondering right now is...

Is there a minimum level that must be reached for remicade to work?  And, is it possible for this number to vary amoungst people?  ie totally different, I realize, but my 'normal' blood pressure is 100/70, the typical is 120/80 but the 100/70 is 'normal' for me, is it possible that some people can have a lower therapeutic level of remicade and it still works?  What I'm getting at is that Stephen is scheduled for an MRE in a month, wouldn't it make sense to see if his inflammation has diminished before increasing the remicade and then, based on MRE results, make adjustments accordingly?  I realize that sometimes we can't rely on blood results to determine treatment (hence MREs, scopes, biopsies) but can't you rely on MREs to determine if treatment needs to be adjusted (especially if blood work matches improvement in MRE)?  

I just hate this...  was totally NOT expecting this phone call!


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## my little penguin

To decrease antibody or reaction risk
You increase frequency and/or add Mtx/6-mp.
Steriods or premedicating only reduces the effect of a reaction
It does nothing to stop or prevent antibodies.

Sorry the doc didn't explain but I would schedule and call to discuss in the mean time.
There really isn't that much difference between 8 and. 6 weeks.
Many kids go back and forth while tweaking either for symptoms or blood work.


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## kimmidwife

Tess,
Don't freak over this like MLP said it is not that uncommon to switch between six and eight weeks. We went through that several times when Caitlyn was on remicade. Have you heard from him? How is he doing in The D.R.?


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## kimmidwife

Ps.
I do agree the doctor should have spoken to you first.


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## Tesscorm

If it's to decrease antibody/reaction risk, something must have shown up in the test, right?  Because, otherwise, why randomly change it now?  Why not have started at 6 weeks?  Does that make sense?  If 'something' did show up in the test, what would it be?  Would it be a level of ATIs that indicates the presence of antibodies?  ie a number above a certain level means that antibodies are developing?


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## kimmidwife

I would think it more likely that his remicade levels were not as high as they should be because maybe he is one of those people that is a fast eliminator of medications.


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## Tesscorm

Kimmidwife,

Yeah, I guess the message totally through me for a loop and I DON'T like that he didn't even discuss it with me first!  

Re Dominican, I haven't spoken with him directly but he texted on Monday and left a voice message yesterday... so far, all is good!


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## crohnsinct

I totally hear ya on the change without an explanation but .. Your son is over 18 and in the docs eyes he doesn't owe you an explanation (translation you are old...haha join the club). 

I am thinking lower than acceptable levels of Remicade also.   Weird though because his inflammation markers are responding.  O's markers remained elevated and her doc didn't jump from 8 to 6.  We went down one week at a time and also increased dosage each time.  

Yeah, I am not a fan of this GI's communications skills but hey, maybe he called Stephen to discuss and Stephen forgot to tell you.   

This is why when O ages out of the ped practice I am transferring her care and claiming she is 3 years younger....what?!  They don't check birth certificates!


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## Tesscorm

Kimmidwife,

Re the levels...  so the level of remicade would be shown on the prometheus results, right?  And if not at an acceptable level, would be below a stated range? right?


----------



## Tesscorm

CIC - yep but Stephen has already signed off that all medical goes through me! :lol:  You didn't think I was leaving that loophole open!!!


----------



## kimmidwife

Yes that is how it would work. Glad he texted and all is well so far.


----------



## Tesscorm

MLP - so you think I should schedule the six week apptmt?  Or he may run the risk of developing antibodies?


----------



## my little penguin

Maybe his crp or sed rate was up.
His levels may not have been as high
I would ask the Gi .
We never got to 8 weeks with DS since he burned through it so fast.
His was because his body was attacking the remicade in the form of an allergy- at least according to the Gi-allergist but he did not have antibodies present on the blood test.


----------



## my little penguin

I would schedule the six week appt because for whatever reason his Gi wants him at 6 weeks at this point.
I would aslo follow up with the Gi and or nurse to find out the why is there a change . Plus get copies of all the recent test results.
It is typical ever DS got his infusions to go from 8 to 6 weeks then back up again usually for blood markers but it varied by Gi .


----------



## crohnsinct

O.K. you didn't ask me but I will answer.  Yes, go ahead and schedule for 6 weeks.  No, you wouldn't risk building antibodies, it takes a much longer break for that.  However, bottom line though is the GI had his reasons for wanting to move it and there is little chance you are going to disagree with them once you hear them. 

Loving the loophole closing!  You could teach classes.  I could fill my semester with Aussie Slang 101 followed by Loophole Closing 101 and an elective of Southern Charm with professor Clash!  Maybe I could earn my tuition by teacher Wineology 101?


----------



## Tesscorm

Thanks MLP!!


----------



## crohnsinct

Oh and while we are teaching classes, maybe sign the GI up for Communications 101!


----------



## crohnsinct

:rof::rof::rof: You're Welcome! :rof::rof::rof:


----------



## Tesscorm

GI with a control freak mom to a quasi adult....  bit patchy! :ybatty:


----------



## Clash

Wow...just caught up! Although I would be highly upset if GI informed the lab of the change without a discussion with you I agree with the others that it may have been a result of low levels or possibly a change in inflammation markers. I'd defo call the GI and get the low down but would go ahead and schedule the 6 weeks, you can change it if there seems no legitimate reason for it to be at 6 weeks.

I'll teach southern charm if Sascot will throw in a Scottish brogue 101, love me some Scotland! I'll be signing up for the other classes too...ladies we will not only be IBD experts but remarkably well rounded ones at that! Oh yeah!


----------



## Tesscorm

OMG, I'm currently taking a crash course in HACA, pANCA, ASCA, ATIs, IgA, IgG, ELISA, ACCENT I, ACCENT II... :runaway:  Anyone care to join me?!? :tongue:


----------



## crohnsinct

Clash said:


> I agree with the others that it may have been a result of low levels or possibly a change in inflammation markers. I'd defo call the GI and get the low down but would go ahead and schedule the 6 weeks, you can change it if there seems no legitimate reason for it to be at 6 weeks.
> 
> QUOTE]
> 
> Haha thanks for agreeing but perhaps you missed it...she was really only asking MLP...understandably so but the least she could have done was pretended she thought we all had an opinion worth hearing.:tongue:


----------



## Tesscorm

:rof:  :rof:  OMG, I seriously don't know what I would do without ALL of you!!!!  I was seriously panicking when I first posted (do you guys sense my all out panic at times? :redface  I can't believe I'm actually breathing and laughing now!  And, it's because of ALL of you! :Karl:

(Good thing I held off on hitting 'send' on my first email draft to the GI...  the one I did send, after hearing ALL of your comments, was much more civil! )

So, buzz off CIC!:kiss:


----------



## Clash

Haha CIC, well....it is Prof. MLP and deservedly so!

Tesscorm, I know you all can read the panic in my posts as well!

Keep us updated!


----------



## Dexky

I think MLP's posts should be in red so I could pick it out w/o having to read all the other nonsense!...like this  I don't know anything about Remi but your "panic" does remind me of mine when our GI wanted to go to weekly Humira and when he wanted to add MTX.  I'm sure there's a good reason but if GI can't give you one, I don't see the harm in waiting 'til the MRE.  Now ignore this and do whatever MLP says!!


----------



## Tesscorm

Spoke with nurse and she apologized that the infusion centre was so quick in calling that she hadn't reached me before they did.  Prometheus test shows zero remicade levels at 8 weeks so, as you all above already knew and explained :worthy:, GI wants to keep remicade at a certain level in his system (My earlier question about whether there are varying acceptable levels for different people is obviously irrelevant given that Stephen's level isn't 'low', but at zero).  So far, no antibodies.

Other results are all good...  CRP now 0.2, ESR 5, HGB is increasing - so it is working! but, I guess, leaving him with no remicade in his system for one or two weeks leaves him vulnerable to the development of antibodies.

Now that I've slept on it and received some info, seems I made a mountain out of a molehill.   :redface:  Thanks guys!!


----------



## my little penguin

We have all been there
Glad you got an explanation .
Go back to sleep now


----------



## Tesscorm

:lol:  at work now...  no sleep for the wicked! :ytongue:


----------



## Tesscorm

Only GOOD news... :sun:

My baby's turning 19 today , spoke with him last night and all is well in Dominican  and he'll be home tomorrow night!  Can't wait to see him!


----------



## Farmwife

:dance:HAPPY BIRTHDAY TO YOUR BOY!!:dance:

So glad he's having a good time.


----------



## Catherine

Happy birthday Stephen


----------



## my little penguin

Happy birthday !!!!!


----------



## crohnsinct

Happy Birthday Stephen!  :bdayparty:

Cancers Rule! :crab:


----------



## Clash

Happy birthday, Stephen!


----------



## DustyKat

Woohoo for good times and birthdays! :dusty::dusty::dusty:

HAPPY 19TH BIRTHDAY STEPHEN!!!

I hope Mum made you one of these cakes!...


----------



## Tesscorm

Thought you were on clean-up duty!


----------



## DustyKat

I am! and I am delegating to Stephen to clean this lady up! :ybiggrin:


----------



## Tesscorm

Are you fair dinkum?!?  Rather than cleaning, I imagine there'd be a wee bit of gardening going on...  Roots and all!!


----------



## DustyKat

LMFAO! I think that deserves a High Distinction in Aussie Slang 101! :medal1:


Your boy has a tongue doesn't he?


----------



## upsetmom

Happy Birthday Stephen!!!!


----------



## CrohnsKidMom

Happy Birthday to your boy!  I'm sure you're anxious to see him!


----------



## crohnsinct

Oh Man!  First C's thread and now this one?!  Have you ladies no shame?! Looks like I will be praying for your souls next week!


----------



## Tesscorm

DustyKat said:


> Your boy has a tongue doesn't he?


Oh my!!!   I'm afraid to ask!!!  Good thing my baby has never had a sweet tooth! :yfaint:


CIC - You just go on and throw our names in those prayers...  right after yours!! :tongue:


----------



## DustyKat

You get out there and you pray hard cic! :lol:


----------



## Tesscorm

Ah well, I guess a vacation's not a vacation without a hospital visit!   Stephen dislocated his shoulder yesterday.  Says he slipped in the shower...  ummm, yeah, right. :lol  He said they took x-rays, gave him anesthesia and simply popped it back in.. simple!   Anyway, he did sound fine, says he's not in pain and hasn't taken any painkillers except tylenol and that he asked for copies of everything from the hospital (that's my boy!).  He'll be home late tonight, I'll see how he really feels then. 

Relieved if something had to happen, it wasn't more serious than this!  Hopefully, he's learned that he is not invincible and was able to learn it without much lasting damage!  First physio already booked for Tuesday.

I don't think remicade/immune-suppression has any impact in healing?  Am I correct in thinking this?  But, guess I should send GI another email as I imagine this could affect his crp/esr numbers???


----------



## crohnsinct

YEs on inflammation numbers and dang!  They say Remicade can affect bones and increase risk of breakage so I would say dislocation is lucky.  Could have broken something.  Was the girl o.k.?:tongue:


----------



## Tesscorm

LMAO :rof:  Given the earlier conversation....  I was wondering (but didn't want to say it)... 

He's not back yet... we'll see what he has to say tonight!  

Strange world we live in when I'm giddy and relieved that he's coming back ONLY with a dislocated shoulder! :ybatty:


----------



## my little penguin

Glad he is ok
And coming home in one piece .


----------



## DustyKat

Bloody Norah! Ugh, can well imagine you can't wait to actually lay your eyes on him! 

I hope the shoulder doesn't give him too much grief and all heals well. :ghug: 

He must be home now, yeah? 

Good luck! 

Dusty. xxx


----------



## Tesscorm

Just waiting at airport now. Ugghh, very late flight!   

Hubby was not quite as relieved as I was at 'only' a shoulder injury. :ymad:  He wants to know how it was that S cudnt manage one week in DR without a visit to the hospital!  :lol:  shall I suggest he may have been  doing some 'spring cleaning'!?!


----------



## DustyKat

Waiting at airports, waiting at doctors, waiting at hospitals, waiting for results! Is that all we are destined to do! :lol: 

Spring cleaning sounds a brilliant excuse! You can say he was helping a lady clean up some cake, after all, you don't have to mention she is young and was actually coming out of it! 

Dusty. xxx


----------



## Tesscorm

And u r soooo right abt the waiting!  :lol:


----------



## kimmidwife

Tess,
 Have been having Internet issues so just caught up. Stephen must be home by now. How is he doing? Glad he is home.


----------



## kimmidwife

Ps happy birthday to Stephen!


----------



## Tesscorm

Tks Kim . 

Stephen is home, sling and all.   Seems it really was a shower accident - he was holding on to the shower curtain rod as he stepped in to the tub, foot slipped and all his weight went onto his arm.  I think it was quite an experience, being at ER with drs who spoke little English!  They gave him painkillers by IV and, after x-rays, told him they were going to put it back. He asked if it wud hurt and the dr said 'oh YES' :ack: and said he cud just relax???  S hadn't understood they were giving him anathesia, so he said that freaked him out when he started to feel the effect!   but he said when he woke up, all was good and very little pain.  He showed me a pic of his shoulder his friend had taken bfr it was popped back in... 

To add to the excitement, drs had wrapped it all up with tape but, Stephen said, by the nxt day, after sleeping on it and spending the day by the pool, it had gotten wet and it was half on/half off (he looked like a mummy!). When they went thru security at the DR airport, they pulled aside into a private room and started questioning him on why it was wrapped, who wrapped it,if anything was wrapped in there and spent a few minutes feeling around all the wrapping!!    Said the officers were nice but was still a bit scary! 

So it was a birthday he'll certainly remember!  And I can breathe again!


----------



## Clash

Glad he has made it home! And for the most part in one piece!


----------



## DustyKat

How many grey hairs have appeared in the last week Tess?! :eek2: 

So good hear he is back safe and sound under your roof and your eagle eye! :ghug: 

Dusty. xxx


----------



## kimmidwife

That is so crazy about airport security but makes sense! Glad he is home safe!


----------



## Tesscorm

Last week, Stephen had his first MRE since starting remicade...

...significant interval improvement in appearance of small bowel.
...the stricture seen before is no longer depicted.
...improvement of wall thickening of 'skip lesions' seen before.
...normal wall enhancement through the small bowel.

:dance: :dance:

But...  still...

...mild wall thickening of the very distal portion of TI, with areas of pseudo-sacculation as before.
...some persistent areas of angulation.
...very small lymph nodes are seen within the ileocolic region.  No lymphadenopathy.


I think it's good!   Maybe not perfect but we're on our way. :thumright:

Follow up apptmt is in a couple of weeks.

In the meantime, anyone know what sacculation and/or angulation means or if the mention of small lymph nodes is important?


----------



## Clash

Can't really help with the terms but great improvement! C hated the MRE I wish Stephen could send him some of that "no big deal" over the MRE since its gonna be like pulling teeth to get C through another one!


----------



## upsetmom

Good to hear there's an improvement....:dusty:


----------



## Tesscorm

What does C not like about the MRE??  Is it just the time to go to the apptmt?  That is one thing S complains about - ALL the apptmts, regardless of what they are for (MRE, infusions, follow ups, dentist, physicals, etc., etc.)  The only issue that S ever had re an MRE was worry over the taste of the contrast drink but, once he found it was tolerable, the rest of the MRE is fine.


----------



## Clash

C has only had the one MRE and that was while he was in the hospital back in February, I think it was a combo of things. He had been constipated and no appetite and they filled him up with that drink which made him sick(remember he vomited up the ng tube which scared him because it came out his mouth), then half way into the MRE that gave him this IV that made him feel hot all over and he started vomiting again. Lastly, I think just the uncomfortable position they made him stay in for so long. He didn't like drinking the stuff for that barium test we did before dx either, he just kept throwing it up. He says it is too thick to drink that much and it makes him gag and puke.

Now the colonoscopy he drinks Gatorade and miralax and he down that like there is nothing to it, says he is a little sloshy but not nauseated from it.


----------



## my little penguin

have him add kool aid singles to the barium cups next time-
we split on packet between the three cups-
it is DS approved.


----------



## Clash

C didn't mind the taste it was more the texture of the barium stuff but he is kind of a texture kid, anything with a weird texture and he starts gagging then vomiting. But, hey, I'll definitely try it!!


----------



## xmdmom

Glad to hear the good MRE report. It sounds like the lymph nodes were just noted but not enlarged, so maybe they're normal.

I found this:
Pseudosacculations are a consequence of relative sparing of the antimesenteric border within an affected bowel segment. Fibrosis and shortening of the diseased mesenteric wall lead to apparent dilatation of the opposing normal bowel wall. Because all three bowel wall layers form the sacculation (in contrast to colonic diverticular disease), such a finding may also be referred to as a pseudodiverticulum.http://radiographics.rsna.org/content/30/2/367.full

Not totally sure about angulation but I did see a reference state it could be from an adhesion.

In any case, it sounds like the pseudosacculation and angulation are unchanged.


----------



## my little penguin

Woohoo for things looking better !!!


----------



## Tesscorm

Thanks xmdmom. 

Clash - poor C!  I can see why he wouldn't want another MRE!  Stephen had a horrible first colonoscopy, he was NOT happy about having his second.  BUT, as his second went relatively easy, he's not worried about the 'next' one anymore.  Hopefully, C will have a much easier time with his next MRE.  

Although, I totally understand re the texture thing...  I've been surprised that S found it easy to drink (and have not dared to ask why he's found it easy! :ack :lol:


----------



## Crohn's Mom

Catching up Tess 

So glad to see improvement on S's MRE since starting Remicade !
Gives me hope for Gab , so thanks for sharing.

OH..and Happy (very) belated birthday to him, and glad his shoulder was ok and he made it through security ! LOL 
(told you I'm "catching up!")

xoxoxox


----------



## Dexky

xmdmom said:


> Pseudosacculations are a consequence of relative sparing of the antimesenteric border within an affected bowel segment. Fibrosis and shortening of the diseased mesenteric wall lead to apparent dilatation of the opposing normal bowel wall. Because all three bowel wall layers form the sacculation (in contrast to colonic diverticular disease), such a finding may also be referred to as a pseudodiverticulum.


Phew!!  I'm glad you cleared that up xmdmom!!  And yes :dusty:, I'm sure that's all clear to you but lil ol dum rednecks like me just don't get it!  So the sacculations are actually the normal parts that just look abnormally swollen because the fibrotic parts are drawn up???

I'm glad the overall trend is good Tess!


----------



## Tesscorm

Yes, I think you've sort of got it Dexky! :medal1:

The way I envision it, if you had one of those long, thin ballons and blow it up but one section (only on one side) did not expand (the scar tissue), what would happen?...

1. the balloon would curve rather than blow up straight, this curve is what I think they are referring to when they mention angulation.  Rather than a gradual loop in the small bowel, there is a sharper turn.  

2. now think silly putty...  this same area of the small bowel (opposite to scar tissue) is now stretched to form the curve and, as it's stretched, small areas in the outer wall/membrane may lose some of it's 'structure' or 'binding' (not sure how to describe this??).  The walls of these small, thin areas may now bulge because the stretching has caused small areas to lose 'connection' with the rest of the tissue (think silly putty when it's stretched and you get those little air bubbles).  I didn't post it above (didn't realize it's relevance until I did my studying last night ) but the MRE commented that it looked like a 'bunch of grapes' - so a bunch of little sacs.

(I hope this is making sense, writing it is helping me make sense of it! )

This may all tie in to something seen in his previous MRE - fixed bowel loops.  Never did get a chance to clarify what this meant but, now I'm thinking these fixed bowel loops were adhesions due to inflammation, leading to some scar tissue which has resulted in angulation and sacculation.

Have no idea if any of this is right!!!   This is just me trying to make sense of the medical mumbo-jumbo I was reading last night! :lol:

And, I have no idea what the consequences are of angulation (risk of obstruction??) or sacculation (risk of infection or perforation??).  Questions for the follow up apptmt. :study:


----------



## Tesscorm

Repeating what I said above 





> Have no idea if any of this is right!!!


, from a bit more reading...  the 'sacs' seem to be located on the inside wall (ie lumen), perhaps on the scar tissue??

Just don't want to pass on wrong information :ack:


----------



## Jmrogers4

Glad it is looking better and I like your explanation that sort of makes more sense to my brain and being able to imagine it.


----------



## Tesscorm

Yep, had to take it way down to balloons and silly putty so I could _try _to understand! :lol:  And, still not sure I do! :ybatty:


----------



## DustyKat

So fab to hear that things have improved Tess! May it keep on keeping on! 

:mademyday: 

Dusty. xxx


----------



## CarolinAlaska

Glad to hear the MRE has improved so much.  I think small lymph nodes and no lymphadenopathy sounds like opposites...


----------



## kimmidwife

Glad to hear the MRE showed improvement! May things only continue to improve!


----------



## Tesscorm

Had our follow-up with GI yesterday and all is moving along! :banana:

GI is happy with improvement since starting remicade, tested for remicade levels and antibodies again as we recently moved to a six week schedule and will let me know if any issue.  If all continues to go well, in a few months, will consider moving out again to 7 or 8 weeks.

Just a couple of bits of info (might be useful to someone else at some point )

- children's multi vitamins - I asked to test vitamin levels as S has now stopped EN and, given Stephen's dislike of most fruits/veggies, he agreed and suggested S take a multi-vitamin each day.  He recommended a children's vitamin as he said they are absorbed higher up in the small intestine. Still trying to convince S to drink a shake each day (compared some brands of children's vitamins and shakes and the shakes provide more vitamins) - S doesn't mind the shakes, the problem is him remembering (especially as he's leaving soon for school)!!! :ybatty:

- the fixed bowel loops in the previous MRE and angulation shown in most recent MRE - kinda vague but... MREs didn't specify if these two comments were referring to the exact same area, either/both 'may' have been from inflammation, angulation 'might' have simply been the positioning of the loops at that particular time in the MRE 'snapshot'.  Said comparisons between MREs are better indicators of any permanent damage rather than a one time brief image.  Agreed these could pose a slightly higher risk of obstruction but not overly concerned, said if it isn't bothering Stephen at all now, 'probably' won't...  

Unless something changes, next apptmt isn't until Spring 2014!!! :dance:


But really annoyed with myself :angry-banghead:  (and Stephen!!) that we forgot to ask about his sensitivity to ambient temperature!!   It's not related to remicade as he began to notice this before remi but I do worry a bit if it is related to an auto-immune thyroid issue (or some other???).  It's something that constantly annoys Stephen and I can't believe we both forgot to ask!!! :ymad:  Ugghh!! But, from all I've read re thyroid, hypothalamus, etc. he doesn't fit any other symptoms and his sensitivity is to both heat in the summer and cold in the winter???  But, he's got his annual check up soon, so we'll just ask his GP.  Coincidentally, I happened to read that deficiencies in iodine and/or magnesium can effect the body's ability to regulate body temperature but, of course, didn't read this till AFTER the GI apptmt so didn't specifically ask that these be tested.  

But, all in all, a good apptmt!!! 


(And now...  dealing with my baby leaving home... )


----------



## kimmidwife

Hey Tess 
Glad for the good update. It is funny Caitlyn is also more sensitive to temperatures. She gets heat rashes all over her legs all the time. We never had her magnesium tested. I was thinking about it because I am taking magnesium for prevention of kidney stones. By the way I found out you have to be careful with the type of magnesium supplement as a lot of them cause bad diarrhea. I am taking something called Beelith. It is a mag supplement that is a little more gentle on the stomach.


----------



## my little penguin

low Mg can also cause migraines


----------



## xmdmom

Glad he had a good visit!

Never ever heard of hypomg causing temp dysregulation --where did you see that? Low mg is more likely associated with neuromuscular symptoms and low Ca.  I'm guessing iodine def was listed as a cause of temp abnormalities because it can cause hypothyroidism, but there would usually be other symptoms (low pulse, sluggish, dry skin) and not sure why he'd be iodine def.


----------



## Tesscorm

Was thinking about the deficiencies a bit more and not sure it fits...  he started to complain about this in the winter, we'd walk outside for just a few minutes and his teeth would start chattering and he'd be shivering (I'd feel cool but not cold like him) and, now, we step out of the office and after being outside for 5 minutes (even if we're just standing), he's begins to feel hot and clearly begins to perspire (and, it's been 23/24 deg. C, less than 80F - not THAT hot).  But, when thinking about the vitamin deficiency today, he's been on EN (elemental formula) until July...  there's no reason why he wouldn't have been absorbing the minerals (was getting 333 mg magnesium per night, RDA 400 and 134 mcg iodine, RDA 150).

No migraines or any other thyroid related symptoms that I've asked him about.  The only other thing he complains about, which I have read can also be connected to magnesium and/or low iron is restless leg syndrome (last check, iron levels were at the minimum but normal range). And, Kim, no heat rashes, just overall 'hot'.

Unfortunately, TSH and T4 levels haven't been tested since last year.

So not sure what to think (ugghh, wish I hadn't forgotten to ask GI!)???

xmdmom - I can't find the site I was on yesterday re magnesium and its contribution to regulation of body temperature.  At the time, I was only looking for general info on vitamins when I was comparing the children's multi vs the nutritional shakes when I came across a comment about mag and regulation of body temperature (but it's mentioned in these articles...)

http://www.progressivehealth.com/thyroid-magnesium.htm
http://voices.yahoo.com/importance-magnesium-good-health-7472006.html


----------



## araceli

Hi tesscorm. I am glad your son is doing great.  I suffer fro hypo, Hypo it's supposed to affect only the cold tolerance, I do have less tolerance to both hot and cold, No migraines unless my pill dose is to high. Calves spams if is too low. Low magnesium causes a lot of things including low thyroid function.


----------



## CarolinAlaska

I hope Stephen's docs can figure this new problem out quickly


----------



## Tesscorm

Thanks CarolinAlaska, I do hope it's not really a 'problem', just not sure what it is???  It's kinda like my daughter's rashes, just not sure what's causing that either... :ybatty:  I'm hoping neither is really 'anything' but, you know... once burned, twice shy!  Not super worried but just enough of a twinge in my mind that questions 'well then, what is it?'. 

I can't call the GI back just for this...   I'm sure most of his patients have much more serious issues for him to deal with, so will just have to wait until his check-up (we've waited this long... what's another 5 weeks?? )   At least, for Stephen, it'll very soon be not too hot, and not too cold! 

aracelli - before being diagnosed with hypo, did you have any other symptoms or was it mainly just the intolerance to temperature??


----------



## araceli

I was very depressed after my daughter was born, more than a year so I knew it was not baby blues. I felt very tired, had pain in my calves (felt like I had run a marathon) gaining weight like crazy, mood changes, Hot flashes.


----------



## Tesscorm

Thanks araceli.  Gosh, it must have been hard to deal with all that plus a newborn!!   Hope your medication keeps it all under control! :ghug:


----------



## araceli

Yea it was hard. I felt better after they found my right med dose. I had hard time getting pregnant with my two older kids, after they fix the lump in thyroid, I got a surprise lump in my tummy, He is going to be 15 in a couple of months, LOL. When I am in stressful situations the med does not work good, so right know since my daughter got sick and then my son, I have not been that good. and 25 pounds heavier, but no complains here. I hope everything goes good with you and your kids.


----------



## ChampsMom

Tesscorm said:


> we'd walk outside for just a few minutes and his teeth would start chattering and he'd be shivering (I'd feel cool but not cold like him)


My son gets cold really easy and always has - even as a small lad he would get the shivers when the rest of us were just a wee bit cold.  During the winter time he wears multiple layers.  I should say multiple, multiple - because he will wear an under-shirt, t-shirt, long sleeve shirt, turtleneck, and a hoodie sitting around the house!  When he goes out my Mum teases him that he looks like an eskimo as he will cover everything.  

I've always chalked it up to the fact that he has very little fat on his body - no natural insulation.  It affects him in a pool as he can't float (unlike my uncanny ability to stay afloat - :rof:  laughs), he always sinks.  

He doesn't have the hot/heat issues - but does on occasion get migraines.  

Congrats on the good news!  2014!!  :dance::dance: Yeah!!!


----------



## Tesscorm

So, Stephen's been on remicade since February and I just got a copy of his blood results from his most recent tests.  I have some questions but maybe the numbers are 'normal' when on remicade???  so just wanted to run the questions by you guys...

MDRD eGFR - came in at >60, last time it was >90.  When I looked up what this test is, I found that levels >60 indicate Stage 1 and 2 of Chronic Kidney Disease!  All his other kidney tests are normal and stable (sodium, potassium, creatinine) just want to be on top of it if it might mean somthing.    Could this simply be a common 'expected' side effect of remicade?

Immature Reticulocyte Fraction - this is the first time he's had this done and the copy I received didn't show normal levels.  But, it did say Low 3.4.  His Absolute Reticulocyte Count was in the normal range (46), RBC and HGB normal. So, again, perhaps this is 'normal' when on Remicade??

Any info on the tests above would be great!


----------



## Clash

Sorry, Tesscorm that is all way out of my realm. I haven't noticed any of these being L on C's labs. After the GI calls and lets me know the labs look good I have just been having them sent to the GP and his asst go over any out of the normal range. It has only happened once, the GI nurse said labs looked good, then when they arrived at GP I called the asst and asked was anything off, I can't remember what it was but it was nothing concerning.


----------



## Sascot

Sorry, no idea - just hoping it's nothing to worry about!


----------



## Dexky

I know you're just trying to get ahead of it Tess but if any of the numbers were truly alarming, the GI would have surely contacted you or Stephen.  Wouldn't he?


----------



## Jmrogers4

Sorry no idea here either, hope it is nothing to worry over.


----------



## Tesscorm

Thanks guys 

Dexky - yes, really I just want to know if something might be indicating a potential problem.  I do believe the GI would call if there was an issue but just want to know if its anything to be watchful of..  

One thing that does concern me but I'm not sure yet if I should be concerned???...  I asked the infusion nurses how often most GIs test, etc. and their answer was 'it varies', GIs send a 'schedule' for testing, ie every infusion, every 6 months, yearly, etc.  When I asked what Stephen's schedule is, she said 'his GI didn't send a schedule, it's whenever the GI asks for it.'  Okay, I'm not really okay with that!    Like, really??...  what, does he have a calendar pop-up that says 'test Stephen'?  No doubt he has a system in place but the 'randomness' doesn't sit well with me - just leaves too much room for error in my mind.


----------



## Jmrogers4

Yeah I would rather know there is at least a set schedule and he could add more if needed as opposed to whenever he decides then at least you would know it is every 3 months or whatever at the very least and more if his "stephen calendar" pops up.


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## Dexky

Tesscorm said:


> But, I imagine he is extremely busy with serious issues, complications, etc. so how high priority wud some minor indications from a stable patient with few complaints of symptoms who is, so far, responding to treatment.  Not blaming anyone for anything nor saying anything important would slip by, just being realistic.  But, while Stephen may not be at the top of his priority list, he is on mine! :lol:  So, if I have to 'nudge, nudge... can we retest this?', I just need to know when to 'nudge, nudge'!


I think it is pretty standard that more than one of the office team would go over all test results.  Don't blame you for nudging though!!


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## DustyKat

I would tell the GI you want bloods done at every infusion. No ifs, buts or maybes. If he starts to argue tell him that firstly, he is a busy man and you don't expect Stephen to be at the forefront of his thoughts. Secondly, the chances of a teenage boy offering up that he would like bloods done is next to zero. Lastly tell him...I am his mother and he is my son and until you are in my position then I am sorry but you can't fully appreciate how I feel.  

He has a cannula inserted so how simple is that?...Insert cannula, draw blood, hook up infusion.  

Dusty. xxx


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## Tesscorm

Can I hire you?   

As much as I prepare for the appointments and know what I want to discuss, I still always end up 
feeling 'shoulda:nonono:, coulda:emot-cop:, didn't! :facepalm:'  

I'm just not good on the fly!


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## my little penguin

DS always had bloods done when they place the iv for remicade
It was one of the perks 
We would get the results before we left the infusion center .


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## Tesscorm

Wow, MLP, I didn't know you could get results that quickly!  Just to make sure we're talking about the same thing...  you get the wbc, rbc, hgb, etc. immediately??  Or am I confused and is there another set of blood tests that are specific to remicade??

Also, did you go to an infusion centre?  Or have the infusion done at the hospital?  I'm wondering if they even have lab facilities at an infusion centre?? (ie I know they can take blood but can they evaluate it?)


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## kimmidwife

Tess,
I agree he should have a set schedule. No doctor can remember every patient and when they need blood tests by heart. Make sure to tell the doctor you want him on a set schedule. I looked it up and could not find a recommendation from the company on how often blood work should be done.


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## Tesscorm

Ugghh, don't you all hate always having to ask, request, beg, etc.  And, once your kids are 18, it's a bit trickier because you are NOT the patient (not that his doctor's given any indication that this is a problem... yet! )

I'm going to take the chicken way out this time...:redface:  His annual check-up is in the morning, just before his next infusion.  Will talk to GP about these recent results and ask if he can add CRP, etc. to his bloodwork.  I need to give his GI the benefit of the doubt - maybe it's when all has been good for two or three infusion that he no longer runs tests at every infusion.  However, in my opinion, the fact that Stephen's CRP went from 0.2 to 2.3 would warrant bloodwork at this infusion to see if it was a one time thing or the beginning of an upward trend...   I'll see if he does bloodwork at the infusion.  If not, then I'll feel even more justified in asking that bloodwork be done on a regular basis.

Just thinking about it...  June tests showed no remicade at 8 weeks, moved to 6 weeks.  Was supposed to check remicade levels at last infusion (Aug. 30, 2nd one at 6 weeks) but mix-up with test and results not available but CRP is up.  And, he stopped his EN in July (still has one or two Boost a day but nothing compared to the 1500 cal of elemental formula he was getting before)... hmmm?


----------



## Clash

I think I am going to refuse to let C turn 18, is that possible? I would've thought with a CRP increase there would've been lab work this infusion as well. 

Sending hugs and I hope the GP adds CRP and you can get the results explained through him.


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## DustyKat

Oh man Tess, not hard to get sidetracked when you are in a consult! You start off talking about one thing and before you know it you don't know how the heck you ended up in Whoop Whoop! 

Yes! Utilise the GP Tess, I do it all the time, in the nicest possible way of course! :lol: Ummm, also don't ask to add CRP just say...and I would like CRP and ESR added please. If you don't ask a question it doesn't require a response IYKWIM. :wink: 

Are the infusions done at a hospital Tess or where there is a lab attached? If so then baseline bloods...FBC, LFT"s, UEC's and so on...results can certainly be returned in that time frame. 

Dusty. xxx


----------



## my little penguin

ours was done at an infusion center that was in the hospital so ....
labs were done and back in less than an hour. 
WE were there typically 3-4 hours.

THat was nice.


----------



## Tesscorm

Clash - his first infusion since the increase in CRP is his coming one on Oct. 11.  So I am really hoping/assuming that the GI will run labs (but, if not, I'll have my own set from the GP anyway)

Dusty - :thumright: I like his GP, even though he's relatively new (old GP moved), he's been really good at going through everything and tried to address and understand my worries when adding remicade.  AND, he's straight up about what he doesn't know re crohns.  I appreciate him saying 'I just don't know' rather than give me some vague, wishy-washy answer that confuses me even more! :ywow:

Re the infusion centre... we're not at a hospital so I'm not sure if the centre has a lab attached.  I'll ask next time.

But the timing of ending EN dawned on me earlier...  the remicade certainly took his CRP way down, 6.5 to 0.2, but this was while he was still on EN.  He ended EN in July and the increased CRP was end Aug.  If the remicade isn't lasting the six weeks (as it didn't the eight weeks) AND he was now without the EN as well...???   Just coincidental as I recently reposted a post in the kids 'research' thread which showed a significant improvement in remission rates when EN was used in combination with remicade.  (But, one result may not mean anything...  could just be a fluke.)




Sort of off topic but does anyone know why remicade sometimes doesn't last 8 weeks if there are no antibodies?  When Stephen was tested at the 8 week mark, he had no remicade but also no antibodies.


----------



## killcolitis

Hi Tess! Just catching up and may have missed some but some people just metabolize the drug more quickly I think. And some have it in their system at the 8 week point but still require more to control their disease (my daughter unfortunately).  If the drug leaves his system between infusions then I believe there's a risk of developing antibodies (a higher risk, I guess there's always a risk) and you don't want that to happen obviously.  
As SK they will not infuse until they take bloods that morning, receive results and have them cleared by the NP/GI.  It makes for a longer day but I feel better about it.  I think it's odd that they would not do bloods before infusions - they can flag potential problems this way.


----------



## Clash

I'm not sure of the mechanism or why but I've have heard the phrase "the body just burns through the remicade too fast."

C got his labs back today and all was normal, which makes me all the more icky about adding back the MTX to which C responded well I could just not take it...ughh this boy is going to be the death of me. I explained why he can't "just not take it" hope it got through!

C asked about EN the other day, specifically how Stephen did it with the NG tube and could he just do it for an hour or so before bedtime for weight gain. Also, he asked did it make Stephen feel full real fast? C's only experience with an NG tube with for the stuff before the MRE and the nurse was racing the stuff through his pump to get it all in his system in time, could that play a role in him feeling too full fast?

I think that is a very interesting study, I'm going to bring it to our GIs attention. Would Stephen be agreeable to adding EN back in at night? I know it might be a little harder at college but my older daughter does have a friend(in college) who does EN every other night for weight due to CD.


----------



## my little penguin

SOme kids/adults metabolize the drug faster than others.
so they need it more often.

that being said DS burned through his quickly
GI now feels he was reacting on some level the entire time and it just built up to his large reaction which was why he kept burning through it.


----------



## DustyKat

It would seem from the study that combining EEN with the Remicade is a worthwhile regime. Are you going to do this Tess? Particularly in view of it being so non offensive as far as treatments go. Would Stephen agree? 

Doesn't really answer your question Tess but if you haven't seen it before you may pull some useful info from it to store for future reference:



> *Approaches to primary nonresponse to anti-TNF therapy*
> 
> Despite the shift in treatment paradigms ushered in by the arrival of anti-TNF therapy for CD, it is important to remember that one-third of patients will not respond to anti-TNF therapy [Sandborn et al. 2007a,b; Hanauer et al. 2006a,b; Targan et al. 1997]. This proportion may decrease as we start to treat patients earlier and with combinations of effective therapy. Patients exposed to anti-TNF therapy and who have failed to respond are referred to as primary nonresponders. In clinical trials, this is defined as failure to achieve a 70- or 100-point reduction in the CDAI score. In clinical practice this may be established by the physician's clinical judgment. Most of the issues surrounding primary nonresponse surround IFX and CD; which is not surprising given that IFX has been available in clinical practice for longer than the other anti-TNF agents.
> 
> Patients with primary nonresponse to anti-TNF therapy should be evaluated to determine why they failed to respond. The most important practice point is to exclude the possibility of an underlying irreversible structural lesion, such as a fibrostenotic stricture, or a possible co-infection (e.g. with Clostridium difficile or cytomegalovirus) or absence of ‘true’ inflammation with symptoms driven by irritable bowel syndrome-like symptoms. If these CD complications or concomitant conditions have been ruled out, then it is generally accepted that primary nonresponse would result from a different underlying CD pathobiology in which TNF is not an important component of the inflammatory cascade. Therefore, choosing an agent with a different mechanism of action would be scientifically rational in this setting. There are data supporting the use of NTZ in this patient population. In subgroup analyses of pivotal trials, there were no statistical differences in the efficacy of NTZ for the induction or maintenance of response/remission in patients who were primary nonresponders to IFX as compared with the intent-to-treat population [Panaccione et al. 2004]. NTZ has been approved by the FDA as monotherapy for the treatment of patients with moderate-to-severe CD with biologic evidence of disease activity and who have failed to respond to conventional therapy and at least one anti-TNF agent. In the ENCORE (Efficacy of Natalizumab in Crohn’s Disease Response and remission) trial, which evaluated the efficacy of NTZ induction therapy in patients with CD, subgroup analysis demonstrated that the overall efficacy of NTZ was similar for patients who had been exposed to, or failed to respond to, previous anti-TNF therapy and patients who were anti-TNF-naive [Targan et al. 2007]. In patients who have never been exposed to MTX or the purine anti-metabolites, introducing these agents or optimizing their use may be considered. This likely represents a small minority of patients and there is no data to support this practice, but it may be rational.
> 
> Despite the rationale for switching mechanisms of action, many clinicians will attempt a second or even a third anti-TNF agent in primary nonresponders, or even a dose escalation (e.g. 10mg/kg of IFX). In the case of IFX, one could check for early antibody formation by testing for IFX levels and anti-IFX antibodies at week 6 prior to a third induction dose or dose escalation. There are very limited data to support this practice or switching to an alternate anti-TNF in primary nonresponders [Lofberg et al. 2008; Mozziconacci et al. 2008]. It has been clearly shown that the overall response and remission rates are lower when attempting to use a second or third anti-TNF in clinical trials and therefore the risk–benefit equation is shifted with decreasing benefits while assuming a similar risk. Clinicians should reconsider this strategy and wait for better evidence to be available. Most of this practice surrounds physicians' and patients' concerns about the issue of toxicity associated with NTZ, particularly with regards to the incidence of progressive multifocal leukoencephalopathy (PML) [Yousry et al. 2006]. Although PML is a serious and often life-threatening disease, it is estimated that the risk for PML in patients treated with NTZ is between approximately 1 in 5,000 and 1 in 10,000 patients, from the postmarketing reports and the number of cases treated in multiple sclerosis and CD. If this estimate is accurate, the risk of developing PML and dying is extremely low and does not make NTZ any less safe than the anti-TNF class of agents. Recent evidence in multiple sclerosis suggests that PML may be stabilized after its onset by plasma exchange to deplete NTZ and permit immune reconstitution.
> 
> *Approaches to secondary nonresponse to anti-TNF therapy*
> 
> In addition to primary nonresponders, there are secondary nonresponders who may initially respond to an anti-TNF agent and then lose response or become intolerant to their initial TNF inhibitor over time. Secondary nonresponders may represent 30–40% of patients during the first year of therapy [Colombel et al. 2007; Schreiber et al. 2007a,b,c; Hanauer et al. 2002]. Secondary loss of response may be due to disease-related factors or drug-related factors. Disease-related factors include the development of a complication of CD, such as a fibrostenotic stricture or abscess formation. Once again, disease-related factors and co-infection should be ruled out before deeming secondary nonresponse to be a drug-related phenomenon. Drug-related factors include the formation of neutralizing antibodies, which are associated with decreased serum IFX levels, altered clearance of drug, or possibly biologic escape mechanisms. It is important in this patient population to obtain drug and antibody levels if available (currently only available for IFX) and to then re-evaluate disease activity to ensure that symptoms are not arising due to irritable bowel syndrome, bile acid diarrhea, development of fibrostenotic strictures, or postsurgical causes. The majority of data available on the treatment of this patient population is, once again, focused on patients who developed secondary non response to IFX. If patients have developed intolerance to IFX, challenging them with a second anti-TNF agent is appropriate. Most of the experience with this approach is in switching to ADA. Sub-analysis of the CHARM trial demonstrated that patients who were previously exposed to IFX still responded to ADA therapy, but with response rates approximately 10% lower than those of patients who were naive to anti-TNF agents [Colombel et al. 2007]. Similar data exist for CZP from a sub-analysis of the PRECiSE 2/3 trials [Schreiber et al. 2007a,b,c]. The interdependence of this reduced response rate to duration of disease is not entirely clear.
> 
> The options for patients who are losing response to IFX are to ‘optimize’ the dosing of the drug by increasing the dose or shortening the dosing interval, or to switch from IFX to an alternative anti-TNF agent [DeSilva et al. 2008]. The measurement of antibodies to IFX and IFX trough levels is useful in guiding treatment strategy. In patients with no detectable anti-IFX antibodies and low serum trough levels of IFX, optimizing the dosing of IFX is recommended. A study conducted at the University of Pittsburgh has shown that many patients with CD receiving long-term IFX required an increase in dose or a decrease in dosing interval to regain lost response to the agent [Regueiro et al. 2007]. Concomitant immunosuppressant therapy did not prevent the need for escalated IFX dosing. In the ACCENT (A Crohn’s disease Clinical trial Evaluating IFX in a New Long-term Treatment regimen) I trial, 88% of patients with active CD who had initially responded to IFX but then lost response during maintenance therapy regained response by increasing the IFX dose to 10mg/kg [Rutgeerts et al. 2004]. The phenomenon of regaining IFX efficacy by dose escalation and shortening the dosing interval is in part explained by data from a study conducted by Maser and colleagues, which demonstrated that the major factor influencing the clinical efficacy of IFX during scheduled maintenance therapy was the serum trough level of this agent [Maser et al. 2006]. This study found that patients with higher trough levels of IFX have better outcomes and that the use of concomitant immunosuppressants did not alter outcomes. One must consider that these data are from an open-label study and therefore are inherently biased. In this series, it appears that shortening the interval may be more cost-effective than doubling the dose. In cases where there is a loss of response to ADA dosed at 40mg every other week, shortening the dosing interval to 40mg weekly has been shown to re-establish response in approximately 75% of patients [Sandborn et al. 2008a,b]. The optimal strategy for managing patients who lose response to CZP is unclear. Data from a small group of patients who lost response to CZP during PRECiSE 2 suggest that a single re-induction dose with CZP 400mg may re-establish response [Lichtenstein et al. 2008], but whether this strategy can be translated into clinical practice remains debatable.
> 
> The only randomized controlled trial specifically designed to address the issue of secondary nonresponse to IFX is the GAIN (Gauging Adalimumab efficacy in Infliximab Nonresponders) trial [Sanborn et al. 2007a,b,c]. In GAIN, 325 patients with moderate-to-severe CD who had previously been exposed to IFX and lost response and/or become IFX intolerant were randomized to receive either ADA 160mg and 80mg subcutaneously at weeks 0 and 2, respectively, or placebo. In the group receiving ADA, 21% of patients entered remission (CDAI<150), 52% had a CDAI decrease of 70 points or more, and 38% had a CDAI decrease of 100 points or more at week 4, compared with 7%, 34%, and 25% of patients in the placebo group, respectively (p<0.05). There was no difference in overall efficacy if the patients lost response to, or were intolerant to, IFX upon study entry. Although the 4-week remission rates reported in GAIN may appear low at first glance, recently presented data from an open-label extension of this trial demonstrated that, over time, remission and response rates increased during the maintenance phase with ADA therapy [Panaccione et al. 2008c]. At 6 and 12 months, 57% and 40%, respectively, of the week 4 responders to ADA were in clinical remission. Thus, 4 weeks may be too short a time point to assess induction of response in CD patients with prior exposure to IFX. Results from a similar open-label study of CZP in IFX nonresponders were also presented recently [Vermeire et al. 2008]. In WELCOME (26-Week open-label trial Evaluating the clinical benefit and tolerability of certoLizumab pegol induCtiOn and Maintenance in patients suffering from Crohn’s disease with prior loss of response or intolErance to IFX), secondary nonresponders to IFX were treated with CZP 400mg subcutaneously at weeks 0, 2, and 4. At week 6, 62.2% of patients achieved response (CDAI score reduction of 100 points or more) and 39.3% achieved remission. The long-term outcome of these patients has not yet been reported.
> 
> Primary and secondary nonresponse to anti-TNF therapy is a reality of treatment with this drug class. In patients with primary nonresponse, serious consideration should be given to switching to another class of biologic agent. The only option for switching to another class (i.e. a biologic agent with a different mechanism of action) at this time is NTZ. However, this decision should be made in concert with the patient, and many patients may choose to try a second anti-TNF agent. For patients who become intolerant to one anti-TNF agent, switching to another anti-TNF agent makes sense and is supported by clinical data. For patients who lose response to IFX, measurement of anti-IFX antibodies and IFX trough levels can be used to optimize the treatment strategy. In the presence of antibodies to IFX, the most robust (placebo-controlled) data at this time suggest a switch to ADA therapy.
> 
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002580/#!po=28.3333


Dusty. xxx


----------



## Tesscorm

Killcolitis - I was concerned about antibodies too, GI mentioned that as well since he'd had no remicade in his system at the 8 week point.  Remicade/antibody levels should have been checked at last infusion but will now be tested at his next infusion.  I've already taken that day off as a vacation day - want to go speak with GP in the morning and then go to infusion (just in case he has any reaction due to antibodies...).  (Hope your daughter has been feeling better lately!)

Clash , Dusty - Stephen would not want to do the ng tube overnight now.  I know he would if it was 'necessary' but I think it would be a tough sell as a preventative measure.  He did assure me that he's now been drinking two Boosts per day so that helps.  In the study I mentioned above, the EN group were taking in 1200 cal per day, the non-EN group did include those on EN but were taking in less than 900 calories.  So, I could 'maybe' get Stephen close to the 1200 calorie level (3 Boost Plus I think would do it).  But, I'm not sure if Boost would have the same benefit as a semi-elemental formula (don't believe the study mentioned the type of formula??).  (Getting a semi-elemental formula will be a whole new issue 'again' as our insurance doesn't cover it and it's so expensive)

Also, Dusty, I do believe Stephen responded to remicade as his CRP did drop significantly and quickly and his MRE showed significant improvement.  But, if we believe that EN played a part, then most of this improvement happened while on EN with remicade.

But, again, one elevated blood result isn't conclusive...  (Don't suppose anyone's heard of an 'at-home inflammatory marker test'? :lol

And, Clash ...  re feeling full.  I know Stephen felt full when he woke up in the morning.  Never uncomfortably full, just enough that he wasn't  hungry until around lunch.  And Stephen was given the 'concentrated' version (pkg said 225 ml water with one sachet, but hospital told us only 150 ml water with one sachet).  He would ingest 1000 ml per night (over 5 or 6 hours).  Stephen never complained that he felt full too fast but, then again, most of the time he was sleeping.  I think speed definitely makes a difference though...  Stephen tried to bump up the rate to 300 ml/hr and found it was too fast (I assume he could feel it filled him up quicker than he could digest it so maybe then he felt too full??).  Also, I again think different formulas will fill you up differently...


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## killcolitis

You can get your GP to rx a calprotectin test.  They're doing them now, OHIP won't cover it, but SK has started to use them (in our case because we went ahead and got them through the ped and then told our GI later that we were doing them). You have to pay out of pocket, I believe it's about $150ish per test. Through Life Labs.


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## Tesscorm

Thanks!!!  I will ask the GP.  (By the way, I had asked for the calprotectin or FC test while Stephen was at SK...  and, yes, they had told me they weren't able to do it as it hadn't been approved yet...)


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## Tesscorm

Good update from S's apptmt today. 

Lab results all good - dumb :ybatty:, forgot to ask for my copy while there! So have no numbers with me.  

So, some of my recent concerns...

Who does what? GI said if I have any question as to whom to ask, he would rather I run questions through his office - he will say if it's a GP issue...

TB test - doesn't believe annual testing is necessary (unless travelling to areas of higher risk) (Tagging Pasobuff - I think I'd said I would let you know what the GI said regarding annual TB testing.)

Hip and back pain - wait and watch...  (my specialty!! :lol

Night sweats - said S's throat is still a bit red (recent strep infection).  Another 'wait and watch' a bit more to see if any symptoms return.

FC, ESR - does not believe either is necessary at this point.  Relies more on CRP than ESR.  FC is still not 'covered' here as a standard test so cost would be mine.  Said he's always happy to have more info rather than less and is willing to give me a requisition if I want one but very much feels that S does not need it now.  And, still feels it's not as reliable for small bowel so we may not be much more ahead with FC numbers.  Would rather do scopes/MRE if there's any question of disease activity as indicated by lab results and clinical symptoms.  So, for now, will sit tight with FC and see how I feel about requesting it...???

Will be scheduling a scope in the next few months - he was able to go into TI by approx. 20 cm last time and, as this was where most of S's inflammation was located, will see what he can see.  Then, will decide if MRE should be done immediately (or if we wait a bit longer).

Re antibody testing - would like to run it annually if he could but, given the cost, he willl run it in another year (unless symptoms necessitate the test to be run).

All in all, I was happy with the apptmt.


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## Clash

Wow all that sounds great! I hope the good labs keep on keeping on! Also hope the scope come back good when they are done!


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## Jmrogers4

Glad appointment went well.  Personal opinion based on our experience is FC does show inflammation in small bowel disease but I think the numbers are not as high for example in the 400-600 as opposed to in the 1000's.


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## Tesscorm

I agree Jacqui and I still think it's worth doing (at some point).  But, he was so confident that S is good now that I feel like I can relax a bit about it.  HOWEVER, just knowing that I can request it when I'd like is reassuring - this is further than I've ever gotten re this test (both at this GI and his last).   For whatever reason, it's just not a standard test here yet.  But, I feel better knowing that if I have concerns, I can request the FC at any time.  (He believes the cost here is approx. $200.)

But, no matter how many 'notes' I make, I still always end up forgetting something or other while we're there! :angry-banghead:  I forgot to ask about his cough...  and, again, about his sensitivity to temperature.  But, as both have been going on for quite a while and haven't led to anything more, I'm not hugely concerned; will just have to start my new list of questions for next time.


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## Jmrogers4

> no matter how many 'notes' I make, I still always end up forgetting something or other while we're there!


Preaching to the choir :tongue:


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## CarolinAlaska

Jmrogers4 said:


> Preaching to the choir :tongue:


Yep, yep, yep


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## SupportiveMom

So glad to hear things are positive. I understand waiting on the antibody test. Though price has come down, its still $295 and I was told not covered by insurance. I'm going to try to submit this one we just did as I didn't submit the Remicade one last year.

Strep! Crud.... thanks for the info it is helpful.


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## DustyKat

So fab to hear all is going well Tess! :dusty::dusty::dusty: 

Now of course I never forget to ask anything…said no one ever! :lol: 

Onwards and Upwards Tess and S!  

Dusty. xxx


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## araceli

:dance::dance::dance:Wonderful news.


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## Tesscorm

Just a little update...   my baby is now 20!    All grown up... 

Miss my little boy but so proud to see he's grown up into a wonderful young man!


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## SupportiveMom

You are too young to have a 20 year old!


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## Farmwife

:bdayparty: and you should be proud of him!!!!


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## Maya142

:birthday2: Happy Birthday S!
Don't worry, I can tell that my 20 year old daughter is still 12 on the inside


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## Tesscorm

Thanks SM!  :lol:  Once I get the creaks out, I try to shuffle along as well I can!  :rof:  But, gets harder each birthday!  

Maya - yep, sometimes I think the same thing... (But, sometimes it's still nice. )


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## araceli

:birthday2:


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## Jmrogers4

:bdayparty:
Wow 20!


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## Clash

:birthday2: Happy Birthday :birthday2: They grow up so fast!


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## kimmidwife

Happy Birthday!!!!!!!!!! My oldest turned 19 a few weeks ago. Hard to believe they are so grown up!!!!!


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## Tesscorm

Thanks everyone for the well wishes!  Sorry, I disappeared for a bit...  have been absolutely crazy at work and busy in the evenings! 

Also stayed away a bit because I was worried my sunny bubble would burst and I wanted to get my facts straight first.   Couple weeks ago, S mentioned that every morning (but only in morning) he was coughing up brown phlegm, AND that it's been happening for MONTHS!  (So much for him telling me anything important...  guess he didn't take 'timing' into account!)  So, needless to say, the worry metre started to twitch.

But, there were a few moving parts, so managed to cap the worry.  Wasn't sure if it was being caused by acid reflux (runs in husband's family) although S has no heartburn, or if it was related to wisdom teeth extraction (S was also complaining of sinus issues and dental surgeon had told us one tooth might have sinus cavity complications) or, of course, remicade concerns.

Anyway, GI suggested we start with GP and get chest x-ray and keep him updated...  GP believes it is sinus related and not reflux or anything with his lungs (so no x-ray for now).  We're trying a nasal spray for couple of weeks to see if it clears up and then will follow up more if phlegm doesn't disappear.

I'm still wondering if it's related to reflux though...  when we saw GI in May, he noted S's throat was a bit red but thought it might still be related to the strep throat S had had a month prior and, his GP now, also noted redness and swabbed to test.  Anyway, I guess we'll know better in a couple of weeks.

While certainly not panicking, I'll be happier when it's just gone!


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## kimmidwife

Sorry to hear! Keeping my fingers crossed that it is just sinus and nothing else!


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## Clash

Me too, I have my fingers crossed as well!


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## Sascot

Hope your happy bubble remains intact!


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## my little penguin

Just sending hugs a since I tend to pop bubbles ....

I tend to agree with your GI
Given S is on remicade and has a possible bloody phlegm -
At least an xray...

Did your go state why he wants to hold off -
Since a lot of people with sinus issues do not cough up old blood .
Did they check his phlegm for blood?
If its sinus issues did they at least refer to ENT since that does not seem minor...
Again not a doc just a mom but 
Remicade changes things IMO mommy opinion .

Go back to your bubble now ...
Sorry I couldn't help it


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## Jmrogers4

Sending bubble reinforcer and hugs


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## Johnnysmom

Acid reflux can definitely cause brown phlegm in the morning.  Has your GI mentioned a PPI?  Johnny's crohn's was treated with Prednisone in the beginning but also with a PPI to heal the acid reflux damage.  It took about 6 months and he was able to get off of it.  I am not sure if Remicade would heal reflux issues, even if it fixes the underlying cause.  I know my son's GI didn't feel the Prednisone would do it.  Worth checking if the nose spray doesn't seem to fix it. 

I think you can safely stay in the bubble for this one!


----------



## Tesscorm

MLP - :hug:  have thought of it all!    Given S's descriptions of his sinus issues, which S believes started after his wisdom teeth extraction (February), GP thought it all sounded connected - 'new' snoring, 'loud' breathing if he forces a strong ex/inhalation (hard to describe but almost a hollow sound, like breathing through a tube??), S feels he needs to clear his throat but doesn't have a cough, etc.  (If it is due to teeth, I'd also posted a while back about wondering if S had a new underbite since extraction but, due to dentist's and S's work schedules, S hasn't followed up yet.)  Perhaps the GP also took into account that S plays on two hockey teams, sometimes two games in one evening, with no breathing/endurance issues??  So he seemed fairly confident that it is probably related to his sinuses.  He said he wanted to try the spray for two weeks and, if phlegm doesn't disappear, then continue follow-up/testing.

I'm okay trying the nasal spray for two weeks as these sinus issues are bothering S and we need to resolve that anyway... and am also taking into account that S says this has been happening for months with no change (still a bit frustrated/worried that he waited this long to mention it!!) so two weeks won't really make much more of a difference at this point.

Could be my sunny bubble but I'm thinking if it was related to his lungs, there would have been some change over 'months'...  some worsening or change in the symptoms???

I'm still thinking reflux could be involved...  seems like there are too many 'things' that tie in - family history of significant problems with reflux, phlegm is only in the morning, slightly red throat, and S has a bad habit of often eating a large meal right before bed, ie finishes hockey at 10:30/11:00 and goes out for wings, pizza, etc. or, even when at home, will decide to eat any/all leftovers at 11pm (adding hot sauce on top!) and head to bed!!  Which, according to hubby, from his reflux experience, says eating that late and then laying flat would be brutal for him.  Only thing is..., S has no heartburn.    S was on nexium for about two years, when he was on overnight EN, because then he did have heartburn on the nights he used the tube???  But, once he ended with the NG tube, he also ended with the nexium.

So...  as it's only two weeks, I'm okay watching but...  will definitely be on top of it as soon as the two weeks are up.


----------



## SupportiveMom

I don't know if this will make you worry more or ease your mind. D's crohn's is also in her esophagus. When she used to spit up (current meds seem to be managing this for the most part) it was a creamy color (or the color of what she just ate) + blood. It was almost never brownish.

Me on the other hand, who has gallbladder issues & acid reflux problems (mostly because I am stubborn & don't want to get my gallbladder out) sometimes I get a light brown mucus color in my spit up. If I don't eat 2 hrs before bed I am ok, and I never lay down & eat (like teenagers LOVE TO DO) 

Hope the answers come soon & are easy to manage.


----------



## Tesscorm

Thanks SM.  So far, S is saying his sinuses feel much better but the phlegm is still there.  Like I said, I do think reflux is part of it.  Going to wait until after the weekend to tell him to not eat late and see what happens.  Didn't want to do it this week so there'd be no confusion as to whether it was the nasal spray or change of eating time that affected the phlegm.  But, I'm really thinking (hoping) it disappears once he stops eating right before bed...???

Then we'll battle over why we need to follow up!! :emot-nyd: S will be saying 'it's done, we don't need to follow up'!  I know he's not going to want to take time off work again.

His scopes have never shown any inflammation in his esophagus, although he had some inflammation in his duodenum when he was diagnosed (but this cleared up by the second scope).  He has another scope scheduled but not until March.


----------



## Tesscorm

Just an update...  phlegm seems to be gone.   Never even had the chance to have him change his eating habits, so must have been related to his sinuses.  Going to keep him on the sinus spray for the whole two weeks and then we'll see what happens. 

Sunburn - getting better but shoulders/upper back still really red and raw.   Still hasn't been able to go to work - tried this morning but, shirt seams were enough to make him so uncomfortable that he drove downtown with me for an hour and jumped on public transit to go back home.   So far there are only two very small blisters.  I put polysporin on a couple of times yesterday...  hopefully, it'll help it heal without blistering.  

He has remicade on Saturday - if he has no blistering, etc., no reason this would be a problem for his infusion, right?


----------



## Jmrogers4

The did Jack's infusion in spite of the infection, said he is already in immune compromised state and didn't want to have to deal with gut issues as well as infection.  GI called in several peers and called remicade makers as well just to verify his thinking.  We haven't had any issues by doing the infusion.


----------



## kimmidwife

Tess,
 It doesn't sound like it would be a problem. But call to make sure. Keeping my fingers crossed that he heals up fast. Glad to hear the sinus thing is better. Sinuses can be so problematic sometimes.


----------



## Maya142

I bet they'll be able to do the infusion. We've only ever moved one because of high fever. If he just has two small blisters, I doubt it'll be a problem (painful and uncomfortable of course for poor S)!

So very glad his sinuses cleared up!


----------



## Clash

Glad to hear the cough and phlegm are clearing up. I wouldn't think there would be an issue with the infusion. Hope the burn subsides quickly, poor S!


----------



## DustyKat

Oh my goodness Tess! I have missed so much. :ghug: 

It is so good to hear things are getting better on all fronts. Phew! They are still heading in the right direction aren’t they? 

Dusty. xxx


----------



## Tesscorm

Thanks Dusty   Yes, all getting back on track!

So far, so good re the phlegm...  And sunburn pretty much gone (just lots of peeling now - yuck!! )


----------



## DustyKat

Yuck?! Nothing yuck about peeling your own or someone else’s skin off! :eek2: :lol:


----------



## Tesscorm

:lol:  He's become so used to me saying 'let me see', that eventually, I didn't need to ask...  I walked in the room, he said the burn was better and proceeded to pull off his t-shirt to show me...  ewww, a cloud of dead skin arose!   _THAT _I didn't need to see!  :lol:


----------



## Tesscorm

Stephen's been diagnosed with molluscum.   It's not bothering him in the sense that it's not painful, or itchy, etc., however, it's appearance is very upsetting to him.

Anyone have any suggestions?  So far, we haven't done anything special for it (diagnosed last week).  Can anyone tell me how easily it can spread (both within himself and to others)?  And should we be expecting it to spread/worsen before it gets better?  So far, I've told him to use a separate towel when drying off the affected area and be sure to not stay in damp clothes (ie after gym, etc.) but not sure if there's more we should be doing??

He was diagnosed through the ER dept. so we didn't get much instruction from dr (other than it will go away on it's own, in time...).  We're going to set up an apptmt with his GP and get a referral to a derm but, it might end up taking a while to set up the apptmts - with S being out of town, it makes it so much more complicated to try to schedule.

Also, any concerns re remicade?  His next infusion isn't until Oct. 11.

Any suggestions would be appreciated!


----------



## crohnsinct

Swimmers are at one with molluscum.  We wait it out. So does everyone else on the team.   It is really nothing.  Just a viral thing.  Some derms will freeze it and cut it off for you if you want.  We did that once and O said it hurt like a dickens and then it got infected and scarred.  We wait it out now.  It never spread to other members of the family and we are in no way careful.


----------



## Tesscorm

How long did it take to run it's course?  I've read anywhere from a few weeks to 4 years!

And, no concerns with remicade?


----------



## crohnsinct

No concern with  remi.  Months.  I don't remember how many and which time but they eventually clear on their own.  How big an area is affected?  O always gets them on her shoulders, lower neck and upper back but not widespread.


----------



## crohnsinct

Oh and because they are immune suppressed and susceptible to viral infections, O gets them frequently.  You know I am a crazy natural girl and love oil of wild oregano for all ills.  It is a natural anti fungal and bacterial agent.  Maybe put a couple drops in evoo and spread over te lesions.  Also, two drops under the tongue works wonders for us and all kinds of skin issues.


----------



## Sascot

Andrew had them for about a year and a half on his inner thighs. It was awful because his legs rubbed together as he walked they were sore and bleeding. We were told nothing could be done. We did desperate towels for him and I would wash the bath after he had been in. Eventually we got a derm appt, he used some sort of chemical to make them blister and then pop, wasn't very nice - caused an allergic rash on his legs but it did the trick and cleared them up.


----------



## Tesscorm

He's got them on his groin and privates area.  Since being diagnosed, he says it's spread a bit.  I guess it could be worse...  

He's done a bit of his own research and wants to have them removed.   But, I've told him I've read it can be painful, at the best of times!  And, given the location of his rash... :yfaint:

Poor guy actually had a horrible experience!!  When he noticed it, he immediately went to the local ER at around 10pm.  He said the Dr took a 15 sec look and ran a urine test.  Then, I seriously believe they forgot about him because he fell asleep on the bed and woke at 7:30 am!  When he went looking for the doctor, she came back and said she was 75% sure it was herpes - even though his circumstances seemed unlikely (one girlfriend, always protected and girlfriend coincidentally was just tested in July because of her job).  Anyway, dr insisted that's what she thought, her only doubt due to his lack of pain, and didn't offer any other possibilities.  You can imagine how completely distraught and panicked he was, so I picked him up and brought him to his GI's hospital (large, well known hospital).  New dr. examined him (bit longer than 15 secs!) and said he was confident S had nothing serious to worry about and dx molluscum.  To be certain, he brought in a more senior dr to confirm.  Senior dr agreed but, to further confirm, did a culture which has come back negative for HSV.

So, given S's (and our) concern with the initial dx, molluscum is a breeze.   But, still not a nice thing. 

Really upset with this first doctor though.  From what I've read, a urine test isn't even a standard test for HSV (but I could be wrong)???  I don't know why she would've created so much panic in him (and us) after such a quick and superficial examination.  AND, S did call that hospital back for the results anyway and was told 'if we haven't called you, it's fine' - so, I'm even more confused about her logic because if she did think HSV but didn't test for it, S could have had it but wouldn't know because the other tests were fine???  Still considering if it's worth writing to their patient services dept to complain...

But, for now, just relieved that, while annoying, it's a manageable problem.  

I've read a bit of Thuja (sp??) and tea tree oil but wondering if they'll really help??


----------



## DanceMom

Both my girls had molluscum.  Spread around A's dance team....she brought it home and passed it to lil sis.  They both had it on their thighs and bottoms.  M's actually got infected so we used an oral antibiotic and steroid cream.  Can't say that really helped though.  We had to wait it out, let the virus run its course.  Took several months (maybe 6?).  If any open cover with a band-aid to try to prevent infection.  Infected ones get pretty yucky and painful.


----------



## Tesscorm

Wish he was home so I could be more on top of this, with constant reminders, questions, etc.!


----------



## Maya142

Is he bad about answering texts or calls? My older daughter is. I tell her if she doesn't answer her phone, I'll show up at her school. That usually gets a response pretty fast 

I hope it clears up soon!


----------



## Tesscorm

:lol:  He's not bad about answering but, easy enough to say 'yessss, mom, did that and that and that.... {rolling eyes}'...  :ybatty:

Husband went to see him yesterday - I sent him lots of white hand towels with instructions to use once and throw in laundry, more white bath towels so he can replace, at most, every two showers, another set of bed sheets (white), more underwear (white)...   all white so all can be bleached!  Paper towels, toilet cleaner, all purpose cleaner, shower cleaner, bleach, Clorox wipes, etc.  :lol:  I've been on and on with him about how extremely important it is right now to be hyper hygienic right now and, angel that he is, he's always said 'Thanks, mom!!  I completely understand!  Trust me, I really want to clear this up!'...  My hubby walks in his room to deliver my cleaning supplies and there are clean clothes piled on the floor and S's comment...  'oh, I just put them there yesterday, they're still good'!  OMG, just shoot me!  :ybatty:

Think I'm going to tell him to send me a video clip of his room each day and his 'allowance' will be dependent on how it looks!  :ytongue:


----------



## xmdmom

Found this http://www.sciencedirect.com/science/article/pii/S000293940201499X
molluscum of the eyelids associated with remicade


----------



## Tesscorm

Thanks xmdmom.

I suppose this leaves him vulnerable to future outbreaks??  I don't mean that the virus remains dormant (at least my understanding is that it doesn't) but I guess you are just more susceptible if immunosuppressed.


----------



## Farmwife

Tesscorm said:


> Think I'm going to tell him to send me a video clip of his room each day and his 'allowance' will be dependent on how it looks!  :ytongue:


:rof: Make sure he holds the newspaper up to get the correct date.:rof:


----------



## my little penguin

Hope things clear up soon .
DS has had wAy more skin issues on biologics.
His dermo knows crohn's so we are good there


----------



## Tesscorm

Farmwife said:


> :rof: Make sure he holds the newspaper up to get the correct date.:rof:


FW, that had crossed my mind! :ylol:  I clarified the 'clean' clothes on the floor issue...  apparently, it's okay as they were the 'dirty' clothes :yrolleyes: because the laundry basket was still full from the last clean load!  Sooo relieved that it was only dirty clothes on the floor! :drink:

But, did reinforce the importance of neatness once again.  

(And, MLP, you're so lucky that DS is not ever allowed to grow up!  )


----------



## Jmrogers4

Both boys got them first one and then about a month later the other yes took months for them to go away.  We were told the goo inside is what spreads touch that and somewhere else and bam new infected area, we tried to keep them covered until they "popped"


----------



## Tesscorm

Thanks Jacqui.  I'm so worried his roommates will catch it too.


----------



## Sascot

:ylol: I can just picture the pile of laundry. I think they just say yes mom and then it floats out their heads! I seem to remember that silver is really good for healing. When some of Andrew's spots got quite inflamed we got silver dressings from the chemist and they did help


----------



## Mehita

I googled photos of molloscum out of curiosity and now I'm wondering if that's what's on the tip of DS's nose! We just assumed it was acne, but... maybe not? How can you tell the difference? It's been there two weeks now and he's been using benzyl peroxide daily to no avail. Thankfully, he hasn't "popped" it because we're worried it could get infected (assuming it's acne). 

I'll try and get a photo when he gets home from school. Not sure he'll let me...


----------



## Tesscorm

Not sure how you would tell the difference.  S says his are like little pimples and they're not painful nor itchy.  In our case, the drs had also given the possibility of folliculitis - so, it seems visual examination may not be 100% confirmation.  I'm assuming S has molluscum because I don't think (although I don't know for sure) folliculitis would spread (and S says it has spread a bit).  In either case, there was no treatment, just time.


----------



## Brian'sMom

A dermatologist would be able to tell you for sure. I think molloscum has a dip in the middle. I thought my son had that on his hand. So did the GI. We went to the dermatologist. It was a wart. It was gone with 2 freeze treatments.


----------



## Mehita

Can a wart grow in just two weeks?

(Sorry to steal your thread, Tess.)

I have a teenage boy whose confidence in getting a Homecoming date shrinks as the wart/acne/molluscum on the tip of his nose grows. Fun!


----------



## Clash

My daughter had molluscum, 3 on her shoulder, when she was smaller. We gave them time but I think in the end the derm decided on freezing them or something. I don't remember the details but now she has three tiny hole shaped scars, barely noticeable. It seems the derm at the time said she may get more but I can't remember. Anyway, she never has.

Sending hugs, Mehita and Tesscorm


----------



## Tesscorm

No worries at all, Mehita.   But sorry, don't have any real advice re a wart.  My daughter had a wart years ago on her finger, we used an OTC (common) treatment suggested by pharmacist and it healed.  (But, was so long ago, I can't remember what it was nor how long it took.)

S has decided to wait for his physical (mid October) to see his GP and then request a referral to derm (he's hoping it'll already be going away by then).  It gets tricky with apptmts when he has classes every day but is about two hours away.  I have no reason to doubt the molluscum dx but do think it's a good idea to have a derm look at it to be sure (and S can discuss freezing/removal ).

But, FW made me think of something...  I imagine his immune system is trying to fight the molluscum now, so do you all think there'd be any concern with getting his flu shot?  I have no idea if there'd be any connection at all but just wondering if it could be 'overload' on a suppressed immune system?


----------



## my little penguin

Ds had his flu shot while on humira and a tonsilectomy - no issues .


----------



## Jmrogers4

We did use a silver solution on the molluscum but I don't know if it was what finally got rid of them or just time but we did use a product it was like the liquid bandage with silver in it.  It was about 5 months in so again not sure if it was that or time but they did go away once we started using it.


----------



## kimmidwife

Tess,
JMs idea about using colloidal silver to help it clear up is actually not a bad idea. Two things though use small a out a and I know longer reccomend taking colloidal silver internally. We used to take some by mouth to get rid of colds until we heard about someone whose skin turned silver from using it to much.
Anyway back to your question about the urine test for HSV,
This is a list of how it is tested, they can test urine if the sores are on the urethra otherwise no it would not give an answer,
http://www.webmd.com/genital-herpes/herpes-tests
I would definitely write in about that doctor and her behavior.
Hope Stephen is doing better.


----------



## Tesscorm

Thanks Kim.

We will ask his GP about the silver.  His apptmt is mid October - probably better to treat asap to try to minimize spreading but, just tougher to follow-up properly when he's away.  Says it hasn't spread anymore so I'm hoping this is the worst of it and we just have to be patient...


----------



## my little penguin

DS dermo has him use this
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682598.html

For the deep dyshirotic ezcema on his toes


----------



## Tesscorm

Ugghh, spoke too soon.  Spreading to stomach and neck... :ymad:  Trying to get apptmt now with GP for next week.


----------



## Tesscorm

Good news from S's scopes -- all clear, no issues, no inflammation! 

Unfortunately, his GI did not come out to speak with us.  He was scheduled with another scope so it was only the nurse who passed on the info.  I would rather have spoken to him..  you know...  biopsies? how many? no inflammation but any narrowing? etc.  But, I'm certainly happy with the news we got!  Told S not to worry, I'll call for results and, with the committee's help, will have any questions answered lickety split!


----------



## my little penguin

Also get copies of the GI notes and pathology report 
Medical records can get that as soon as GI releases it


----------



## Maya142

So glad scopes looked good! Hope biopsies do too!


----------



## Tesscorm

Will do!  I've never requested copies of the GI's notes but, I've been waiting for S to have his scopes done and am now going to ask medical records for all past notes/summaries (thought I might as well wait and get all the info at once).  

Also excited that I saw our hospital is starting a trial allowing a limited number of patients to access their records online!   Not sure if patients have already been selected or if trial has begun but, even if so, access will soon be coming!


----------



## Clash

Woohoo on the scopes! That deserves a glass of wine!


----------



## Sascot

That's great the scopes look good, hope the biopsies don't take too long


----------



## crohnsinct

Tesscorm said:


> Also excited that I saw our hospital is starting a trial allowing a limited number of patients to access their records online!   Not sure if patients have already been selected or if trial has begun but, even if so, access will soon be coming!


Haha...I was told our hospital was going to mychart over a  year ago.  They tell me GI is the last department and that is the cause of the delay.  Not sure how they are going to do that as O's file is Literally 6 inches thick.   I am sure they are only going to put certain things online but I still can't imagine there are a lot of frivolous notes in that file.


----------



## Tesscorm

Thanks, CIC, for bursting my online access bubble! :lol:  But, yeah, I kinda knew using the word 'soon' was optimistic.   This stuff never happens 'soon'!


----------



## Jmrogers4

Our online access (mychart) only has test results and medication lists no doctor notes. So I still have to wait to talk to doctor most times


----------



## my little penguin

We have two portals one for the adult hospital through ped and one for kiddie hospital for GI .
Once they are in place some only put in lastest test results after the portal was open .
Others only bloodwork from beginning but no notes on either
Adukt one has copies of pathology reports xrays etc... But no notes
Kiddie has just bloodtests and a General your kid has this file but no notes


----------



## kimmidwife

Tess,
So glad to hear about the scopes! Fingers crossed that the biopsies look as good!!!!


----------



## SupportiveMom

Great news Tess!


----------



## izzi'smom

Glad to hear about the scope! Our mychart also only shows test results, and if they aren't done at the hospital, it's a scanned copy that is difficult to decipher-I have to ask the m to mail it to me, along with scripts, because digital scripts are great until you go to pick up a med after office hours and it was never ordered...


----------



## DustyKat

Oh Tess, what a brilliant update! :ybiggrin: I am so happy for you and your lad and I hope with all my heart the biopsies show the same fab result. :ghug: 

Dusty. xxx


----------



## awmom

What great news!!  you must be so relieved!


----------



## Tesscorm

Thanks all!  

It is a relief to hear the words 'all good'!  I had no real reason to expect bad news but, as I mentioned, there's always that little fear that the doctor will come out and say 'well, I wasn't expecting to find xxx' ...  

I know visual isn't 100% but, as S's inflammation has always been worse in his TI, I'm hoping the visual improvement will extend to microscopic too! 

Going to wait a couple of weeks after scope to call for results as I think biopsy results take approx 10 days (unless I'm confusing that with another test??).


----------



## my little penguin

We can get biopsy results in as little as twenty-four hours ---
No more than one week


----------



## kimmidwife

For us it takes at least a week to get the results.


----------



## Tesscorm

Finally have copy of scope results...   drum roll please...

"He has had complete mucosal healing..."   "no active disease whatsoever" :dusty: :dance: :dusty:

They did note some scarring but no luminal narrowing...  I'm okay with this. 

Think it was Jacqui who recently said this...  and I share her feelings!...  You guys have been awesome!  I feel like I've finally finished a scary chapter and you guys were there pulling me through the worst of it!  I know the book won't be done till there's a cure but, for now, I can really say 'he's good!" with no but, except when, sometimes...!

I pray everyone gets to this point...  sooner or later, but sooner would be better!!  I haven't posted as much lately...  a bit busy, a bit because there are so many great members here, I sometimes don't have anything else to add...  but, just know I am around and will post whenever I can (or can add anything of value ).

For new members, just know joining the forum was the best thing you could have done!  You will learn sooooo much and will find lots of support!  

Thanks again!!


----------



## Clash

Woohoo such awesome news! I love it! Celebration is on hand wine for everyone!


----------



## my little penguin

That is wonderful news long may it continue !!!!


----------



## SupportiveMom

AMAZING!!! SO HAPPY FOR YOU BOTH! 

I hope it stays that way for a VERY long time!


----------



## Jmrogers4

Don't currently have a glass of wine in hand but raising my coffee cup to remission!


----------



## Sascot

Fabulous! What a great update, always nice to read positive news


----------



## Maya142

GREAT news!!! Hope it stays this way forever :dance::dance::dance:


----------



## CarolinAlaska

Good to see you Tess, I'm glad to see that Stephen is doing well. Is he on Remicade?


----------



## kimmidwife

:drink: Always glad to hear good news!!!!!!


----------



## Farmwife

This is great to hear.


----------



## awmom

That is fantastic news!!!!  May remission last FOREVER!!!!!!!


----------



## Tesscorm

Thanks all 

Carol, yes, S has been on remicade for 2 years now (can't believe it's been that long... ).


----------



## Mehita

Woohooooooo!


----------



## lenny

:cheers::cheers:


----------



## momoftwinboys

:ybiggrin:Sweet.


----------



## DustyKat

Oh Tess, this is just the best! I am SO happy for you and your lad! :dusty::dusty::dusty: 

:mademyday: 

Dusty. xxx


----------



## Tesscorm

Question re high blood pressure...

Aside from a remicade allergic reaction during infusion, does anyone know of any connection between crohns or remicade and high blood pressure?

It seems S now has high blood pressure???  His new dentist mentioned it at a visit in May but I didn't think anything of it as he'd been under stress at that time and just being at a dentist can cause stress.  But, then nurse mentioned it at Saturday's infusion and said it had been the same at May infusion.

Before infusion has started (so not an 'immediate' allergic reaction), his blood pressure has been approx. 140-145 over 85-95.  During the infusion, they take his BP another four times and by the last test, it has dropped to 125-129 over 82-87.  Nurse said people are often nervous before needle so this is not uncommon.  I would have accepted this but S is not nervous about needles and goes to his infusions planning to sleep and relax.  Plus, even the last reading at 125-129 over 82-87 is still leaning towards a higher level.  

I don't know what the reading was at the dentist.

Yesterday, I decided to test it at my parents' (they have a monitor at home) and it was 135 over 87.  The only stress would have been the worry that I was testing it because it was high last time.  Is that enough to push it to 135 from a normal level of 120?

S is in good shape - recent scope showed all was good crohns-wise, he plays hockey 2-3 times per week, he's gained a few pounds but still at a healthy weight (180 lbs, 5'11")...  but, due to busy schedules lately, his diet has been horrible over the last month or so (LOTS of fast food, frozen pizza, cold cuts...) - could his diet be affecting his BP this quickly?

Because his job is still so new, he's really hesitant to take time off work to see his doctor - I'm not sure how worried I should be about this??  I've told him he's got to change his diet right away but should I be worried about his hockey?  I know exercise is good for BP but sometimes he plays two games in one night - could that be a problem with high BP?

Anyone have any experiences with high BP?  Or any thoughts??


----------



## Mr chicken

Check his kidney function


----------



## Tesscorm

Do you mean in his regular labs?


----------



## Mr chicken

No -see a nephrologist
24 hour urinalysis  
Plus quick urine dip
And bun/creatine levels( blood)
Possible ultrasound kidneys as well

First signs of kidney disease or damage is high blood pressure
Crohns can cause issues with kidneys 

DS has multiple cysts in both kidneys 
We were told of his blood pressure is up they start to get really concerned


----------



## Sascot

When I get my blood pressure checked they say the bottom number is most important. So long as it's under 100 then they don't bother really. Not sure if that's right or not


----------



## Tesscorm

Thanks!

I'll send an email to his GI...  S is going NOT going to be happy.   

We're still trying to figure out what's going on with that invisible rash/irritation.  It's no better and it's been almost 6 weeks.  We've tried so many lotions, creams, baby powder but nothing helps.  I wonder if it's connected somehow??  Area of sensation/rash (I don't know what to call it since it's not really a rash??) hasn't grown or gotten smaller but, while the sensation lessens sometimes, it's still fairly constant.  

S gets so frustrated with the dr apptmts.   Especially given that he has a new job.  So hard as he's caught between rock and hard place - he wants to get it treated (now BP too) but hates the thought of starting to ask for time off already.   And I feel like I'm trying to balance on a tightrope...  Ughh...

Thanks for the info!


----------



## xmdmom

I think they used to care more about the lower (diastolic) number but now they care about the upper (systolic) number as well.  





> For years, doctors focused primarily on diastolic blood pressure. The theory was that the body could tolerate occasional increases in systolic blood pressure, but consistently high diastolic pressure could lead to health problems. However, doctors now know that high systolic pressure is as important as high diastolic pressure — and even more important in people older than age 50.
> 
> The recommended goal for systolic pressure for younger people is less than 140 mm Hg.


http://www.mayoclinic.org/diseases-...sure/expert-answers/hypertension/faq-20058527

I believe that a systolic  bp 120-139 and diastolic  bp 80-90 are considered prehypertension or borderline hypertension.  

Letting the doctor know and knowing renal function (BUN/CR) seem reasonable.


----------



## SupportiveMom

Ditto what MLP/ Mr. Chicken said. I joined a gym that checked my blood pressure which was high. Went to the doc & just did urine test. He thinks I might have a cyst. Me...I don't have crohns... at least not yet. I have no idea what caused it if that's what it is, but it's thanks to Good Life I even checked it. Just to play it safe Stephen should too. I hope its nothing and just plays itself out. Stress can't be helping him!


----------



## Tesscorm

Thanks.

I don't think stress is the cause of his recent BP levels but, until recently, I didn't realize how much his health actually worries S.    Because he rarely talked about crohns (or any other minor health issue), I hadn't appreciated that having been diagnosed with crohns, perhaps, also took away his own safety bubble of 'it can't happen to me'.  Worries of a symptom (not even related to crohns) has left him almost overwhelmed on a couple of occasions.  His reaction/worry totally came out of the blue to hubby and I.   Another fine line to balance...  have him take his health seriously without becoming overwhelmed by every symptom.


----------



## Maya142

No idea about blood pressure (my girls tend to have low BP) but wanted to send hugs. Your poor boy - it's hard balancing things :ghug:.


----------



## Mehita

Any family history of high blood pressure? 

Agree that it needs to be checked out. Are there any after hours clinics available?


----------



## Tesscorm

Only family history would be my parents but the high BP only appeared when they were in their 60s.  Hubby normal and I have always had low blood pressure...

S's recent BP levels:

May 12:    146/95,    128/72,    123/63,    121/62,    120/63
June 20:    140/82,    129/83,    131/78,    132/88,    129/87

Now that I have his numbers in front of me, it looks like they have moved upwards (even though, within each infusion, the levels moved down from beginning to end of infusion).

Have sent email to GI...  waiting...


----------



## Catherine

You need to get the kidneys checked.  My middle daughter has blood pressure check once a year due a kidney infection when she was 2 year old.  She has a possible scar on one kidney.

They don't why kidney damage causes high blood pressure, just that it does.


----------



## Clash

I hope there is quick resolution to this. So sorry! Sending hugs!


----------



## awmom

Hi Tess, just as a possibility, whenever my husband gets even a slight bug, or if he takes antihistamines, his blood pressure goes up.  Is he by any chance taking any allergy meds?  I know N had borderline high blood pressure for about 6 months to a year.  Then it came down. Let us know what the doc says.  I know what you mean about them worrying so much more than they let on, and feeling annoyed and overwhelmed with doctors appointments and other limitations.......it does take a big toll.  Warm thoughts for you both.


----------



## Tesscorm

awmom - no allergy or other meds that I can blame.  Did you ever find out what caused N's BP to rise?  Or come down?


----------



## awmom

No, no idea what caused it.  I brought it up with the GI a couple of times and he just said he was not concerned but they would watch.  But I was concerned!!!! Maybe they did blood-work but I don't remember.  I hope you get to the bottom of this soon.


----------



## SupportiveMom

I hope you get answers soon. Don't get your blood pressure rising!


----------



## Tesscorm

Isn't it so frustrating... when they're not concerned and we are!! :ybatty:


----------



## theresad

If I've learned anything from this disease, it's that everything is connected. I agree that there's no bigger frustration than you being more concerned than the docs  

Kidney function tests (BUN/Creatinine) should immediately tell you if there's a problem  - they are usually a standard part of a chem 25/metabolic panel, so if he has a recent one, that should give you some insight. If BUN/Creatinine are elevated, you can look @ the kidneys. Kidneys FX is directly connected to heart FX, because kidneys have to clear everything the heart pumps, so when one is not working/working too hard, the other compensates accordingly. 

A couple subjective notes:

My son normally has low-ish blood pressure, but his systolic # was elevated (not much, just to 128) in the last office visit. He is in a flare, and his body is probably under stress, he also is underweight and doesn't eat, so maybe his blood volume is low and his heart needs to work harder to compensate?  

Then there's salt - that's just a direct relationship to blood volume - salt retains water, then the heart has to work harder to efficiently process the volume. You could try to watch that, but IDK if that's realistic, and young people are usually very good at balancing that. It's us old people that have problems because our bodies are not as in tune.

Another factor could simply be your son's age. Teenage boys and young men have blood pressure elevations during periods of rapid growth. Potentially, if he is in "healing/growing" mode, that could be a factor. In a big growth spurt blood pressure can go crazy.

Anyway, my 2 cents. Look at the last BUN/Creatinine or ask them to draw a panel next time you go in. That way, you can rule out kidney issues and you're at least not climbing the walls over nothing. 

GOOD LUCK AND HUGS.


----------



## Tesscorm

Unfortunately, the latest labs I have are from Dec. 2014.  I should've asked for more recent copies when I sent email to GI.  :ybatty:  December creatinine and eGFR levels were normal (I don't see BUN or urea on tests).

Every time I slack off on getting the most recent results, I regret it!  But I will ask for the May results when I hear back from GI.

Thanks!


----------



## lenny

I'm so sorry this disease is bothering you again!


----------



## kimmidwife

Tess,
 I have to Gree with the others. In someone his age this needs to be checked out. while waiting for an appt please tell him to avoid caffeine especially energy drinks or anything that boosts your energy like 5 hour energy. I know teens sometimes use these things. They can cause a rise your blood pressure and if his is already elevated it can cause some serious consequences.


----------



## Tesscorm

Thanks Kim!!!  I hadn't thought of that!  I don't think S drinks any energy drinks but I will mention it to him right away (before his hockey game tonight)!

Still haven't heard back from GI and won't tomorrow (clinic closed).     S's at-work training period ends tomorrow, so he wants to wait until next week to set up apptmt with GP (so that he, at least, knows who his supervisor is! )  But, in the meantime, he wants to go to walk-in clinic on Saturday about that skin irritation (I'll be asking about BP too).

S has been doing some research on his own re that skin irritation - he thinks it's related to nerves.  From what he's read (and he sent me some links), it does seem to describe what he has - burning, tingling but nothing visible.

Anyone think these could be related?  Could an kidney issue affect the nerves in your groin?  I know the GP or GI is the one who can answer but just thinking..., while I'm waiting...


----------



## Maya142

Tess can you describe the skin issues again? I somehow missed it.
Tingling and burning does certainly sound nerve related. Has his B12 been checked recently? Did he get injured? 

Has he by any chance taken a lot of NSAIDs? Advil or Motrin for example? I remember he was quite an athlete. My husband has been on almost daily NSAIDs for years and now has kidney issues and hypertension. Though S would be very young for that issue...


----------



## Mr chicken

Any family history of adpkd ?
He would be the right age for it too show up
But when was his last mre ...?
That would have noted any issues with kidneys .


----------



## Mr chicken

> Because the kidneys stop filtering blood in patients with kidney disease, waste products begin to accumulate in the blood. This can lead to fatigue, often accompanied by a feeling of general ill health. Headaches are another common symptom, as is dry skin and a generalized itching sensation throughout the body, known as pruritis. Patients with kidney disease may also experience nausea, vomiting, a loss of appetite and dramatic, unintentional weight loss leading to tissue wasting.


From
http://www.livestrong.com/article/168915-kidney-disease-symptoms-pains/#page=2

So yes itchy tingling skin can be from kidneys


----------



## Tesscorm

The skin irritation started when he was in Portugal, end of April/beginning of May.  The area is at the very top of his leg/groin (ie bikini line area).  He started to notice the sensation a couple of days before he returned.  Initially, he thought a heat rash.  When it didn't go away, he began to think it was molloscum/folliculitis again even though he couldn't see anything this time.  Went to his GP but GP couldn't see anything and suggested some sort of heat rash (no tests run).  S was misdiagnosed last year with herpes, when it was actually molloscum/folliculitis, so when the sensation didn't go away, he began to worry that the misdiagnosis had actually been correct...  went to an STD clinic...  again, nothing to be seen, tests done, all clear.   Another week or two go by, sensation not lessening, and his illogical herpes panic was really stressing him...  hubby goes with him to ER dept of GI's hospital to have it looked at again and alleviate his herpes fears.  Again, nothing to be seen, no tests run, dr tells him just some sort of heat rash!

It's now been six weeks...  he's spoken with our pharmacist, tried all kinds of creams, talc, anti-chafe gel, etc. and nothing's helped.  Says it 'sort of' burns and tingles and it feels like, if you were to look, you'd see raw skin but there is no raw skin, no redness, etc.  Worse with movement but can still feel it when he's just sitting/lying.  Sometimes worse in morning, sometimes at end of day.  Area of sensation has not grown nor shrunk.  Neither heat nor cold affect it and it doesn't hurt 'more' when you touch it.  But, it's starting to drive him crazy!  He said it never stops, may lessen at times but that it's a constant aggravation.  Initially, I'd thought some derm issue but now, I am thinking more a nerve issue.

IDK...???

And no nsaids since dx...  it actually may have been his use of advils because of hockey that triggered the crohns.


----------



## Tesscorm

No family kidney issues.  Last MRE was Aug 2013 (kidneys normal).  Just read through your link and I haven't seen any of the other symptoms...


----------



## Maya142

Sorry Tess no ideas. It does kind of  sound like a nerve issue. What about seeing a neurologist?
Really hope you can figure out both issues. Sending hugs!


----------



## happy

Tesscorm,
I know you want to find the source of the problems, but in the meantime acupuncture can be very helpful for both problems, especially since they are both new problems. I hope that you can get some answers and solutions soon.


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## theresad

This may be stupid, but did they mean Herpes Zoster as in shingles?


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## Sascot

It could just be an irritated nerve. Maybe he twisted his lower back and hurt a nerve, could be something as simple as getting out of bed wrong. Hopefully it will settle


----------



## Tesscorm

theresad - no, not shingles...  when it happened, he'd noticed small blisters/pimples and went to the ER dept at a small local hospital near his school.  Very annoying how it all played out...:ymad:  doctor only saw him for a few seconds, then, I think, forgot about him because he arrived at 10pm, at approx. 1am, dr assessed him for a few seconds and told him to wait.  S fell asleep while waiting, waking at 7:30am!  Went looking for dr, nurse came back and said dr was 90% sure it was herpes (only doubt in dr's mind was that he had no pain)!  As you can imagine, he was very upset!   I went to get him and took him to his GI's hospital (a large well respected hospital), two doctors assessed him (two, because the first dr could see how panicked S was about it and brought in his senior dr to reassure S), ran tests to reassure S but both said they were absolutely certain it was not herpes, that it was either molloscum or folliculitis.   (Tests they ran came back clean.)

But, while both the previous and current issues are in the groin area, they are not the same...  the molloscum/folliculitis were 5 or 6 small pimples over a larger area, didn't hurt, etc.; now it's just one specific area, one side only, etc.  I really don't think there's any connection - I think it was just such a terrible scare to him at the time, he immediately jumps to that thought.

As far as injury, he doesn't recall a specific injury just before this started.  However, it's not uncommon for him to have groin injuries from hockey.  This isn't the same as the usual 'stretched groin' but certainly this could be a 'different' groin injury that affected his nerves??


----------



## Mehita

What about thrush? I know in breastfeeding, it can be painful and irritating for the mom with no outward signs. Just a thought...


----------



## kimmidwife

Tess,
    Sending you a PM. I have an idea about the tingling.


----------



## Tesscorm

So (thankfully) very anticlimactic GP apptmt...

'rash' = jock itch :yfaint:  GP said that although S couldn't see a rash, HE could...  I imagine S must have been a touch doubful because GP finally told him that the reason S couldn't see the rash and he could was because he was the dr and S wasn't!   But, he did say that the reason it has lasted so long is that he is having a hard time fighting it due to remicade/immune suppression.  Prescribed a lotion.  Hopefully, this will be the end of it!

And, blood pressure...  110/70!  But think I'll be keep an eye on this...  there were four tests (dentist, twice at infusions and the one I did) which were all consistently higher so, while I'm relieved this one was low, still questioning why four higher ones??  Time will tell.

So, just glad it seems like easy, simple answers!!!


----------



## Mr chicken

White coat syndrome ...?
Gp he is familiar with I assume
But some folks have high bp at the doctors or dentists 
I know Dh is Like that especially the dentist 
The docs said white coat syndrome


----------



## CrohnsKidMom

Hooray for anticlimactic doctor appointments!!


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## theresad

I would say great news, except for the jock itch part


----------



## Tesscorm

I suppose white coat syndrome??  Needles or infusions have never bothered him but I guess there could still be some subconscious anxiety??  Well, his next infusion is in 3 weeks so we'll see what happens then.  Not going to worry until then.  (Of course, if my mom happens to bring her BP monitor over...  :lol


----------



## Catherine

Dehydration can lower blood pressure.

We are told what is the cause of the difference is K's blood pressure.


----------



## awmom

Glad his BP is back to normal!!


----------



## vtfamily

When Gus was on Remicade, he appeared to be doing well.  At least his pain was well managed and his labs were good.  There were no outward or diagnostic  indications that the Remicade had become ineffective for him.  We realized that it had stopped working at around the 18 month mark because the scope procedures revealed new inflammation and strictures.  You would think the labs would show elevated markers, but in his case, they did not.

I hope S. does well with Remicade and that it remains effective for him for a long, long time.

Cheryl VT


----------



## Tesscorm

Thanks Cheryl.  So far, so good with S and remicade.    Labs and scopes in March have been good so far.  I pray it continues for a long time!  As it's been a long time since his last MRE, I'm planning on asking if we can schedule another one at his next follow-up appt.  Haven't been worried as most of his inflammation was at his TI, which was been seen by scopes but, previously, he did have inflammation extending beyond what scopes showed so...  wouldn't hurt to make sure nothing was missed in scope.

There was a study that showed continuing with partial EN while on remicade increased remicade's success rate.  S still drinks one to two Boost shakes per day - it's not nearly as much as the amount in the study (S drinks 250-500 cal/day, patients in study were taking in 1200 cal/day on average) but my 'sunny bubble, stretching the positive' perspective is that 1200 was the 'average' which means some of those successful patients were taking in fewer calories/day...  :lol:  IDK, in reality, it's probably no more than my little way of feeling that I'm helping remicade along! :blush:  In any case, with him away at school for months and being a picky eater, at least it provides him with some nutrition.


----------



## vtfamily

Tess,
Good to know.  I always just think about the EN as extra calories and nutrition, not as a facilitator for the meds.  I will definitely keep it in mind for the future!
Cheryl VT


----------



## Tesscorm

Wow, this jock itch won't go away.    It is driving S nuts!  He's been using ketaderm (prescribed by GP) for a month now and it's come back.  It had gone away (or, maybe, mostly gone??) and S had stopped the cream (probably too soon??).  But, he had his infusion over the weekend and the jock itch/sensation came right back!   S thinks it's a reaction/side effect to the infusion - in the sense that his immune system was lowered and gave the jock itch a chance to come back.  

He's going to finish up the cream and I'm going to try some home remedies I've read about (anti-fungal soaps, etc.) and see if that helps...  if not gone in a couple more weeks, we'll have to ask for a referral to a derm.  I'm worried that if it stays too much longer, it may eventually turn into something more complicated (infection, etc.).  (Or that it's some other type of infection and not jock itch at all??)

Then, he's been having chest pain when he takes a deep breath (but not when playing hockey??). :yfaint:   GP thought it was pulled muscle at apptmt last month but can't still be a pulled muscle.  Went to a walk-in, they barely did anything but did listen to chest and said it was okay??  (He has no cough.)  Somehow the thought of heartburn came up as that can cause my husband similar type chest pain - S decided to take some of his nexium (last few days) and chest pain gone.  He's going to take the nexium for one week and stop.  If the chest pain comes back, seems likely to be heartburn??  So, what's up with the heartburn?    Stress from jock itch??  

He's getting really frustrated. 

On a positive note, his BP was normal at last infusion.


----------



## Mr chicken

Get the dermo referral
Fungal infections and biologics are not a good combo
The dermo will know what to use to knock
It out before it becomes something other than an annoyance .


----------



## Jmrogers4

Agree with Mr Chicken on the derm better to knock it out quickly and make sure it's not something more problematic.

Hope the chest pains are taken care of by the nexium and it's just one of those weird fluke things we have to deal with


----------



## Tesscorm

Yes, I agree derm is a good idea.  It's like balancing on a fine line though...  

S has been so cranky because of all this, he doesn't want to keep asking for time off (he's also taking an online course and needs time off for exams) so he keeps trying to 'fix' it (by using 'treatments' or going to walk-in clinics) and gets even more frustrated when it won't go away... and around and around we go.  As much as he hates to miss school, I actually think it's easier for me to convince him to miss a class for an apptmt than it has been for me to get him to take time off work.   And, of course, derm referral will mean two appmts - one with GP and then with derm. :ack:  There are some things that are just easier to control when they are little...  sigh.


----------



## Maya142

Sorry to hear Tess. Poor Stephen  being itchy and uncomfortable all the time sounds awful!! 

It is SO much easier to pull them out of school when they're little. We're having that problem with my older daughter too - she doesn't want to take time off her job for routine appts.

Both my girls are on PPI's and have needed them for the last couple of years. I wish we could get them off them, but we just haven't been able to because they're on NSAIDs. 

If he has issues when he comes off Nexium, he could try other OTC meds -- Maalox and Pepcid worked well for my girls. That said, if heartburn continues to be a problem, he should probably let his GI know and decide.


----------



## kimmidwife

Sorry to hear! Make the appt with the derm, hopefully they can figure it out


----------



## crohnsinct

Skin is so tricky I wouldn't trust a walk in or GP.  I would go with derm but even they a lot of times can't tell exactly what it is and just throw some broad spectrum cream at things.  If you really suspect fungal, we use oil of wild oregano.  Both topically and systemic.  Two drops under the tongue and two drops in a carrier oil for topically...we use olive oil.  But of course get the o.k. from your GI first...ours approves it.


----------



## happy

About the chest pain--just chiming in that it could be costochondritis--inflammation in the joints that attach the ribs to the sternum. For some people it is so painful that they think that it could be a heart attack. It seems to be a common EIM. Acupuncture is good for this--some people even go on a few days of prednisone to settle it down. Palpating along the joints will usually give you the answer--it is excruciating. Keep in mind that these joints are normally quite tender when they are not inflamed.


----------



## pdx

Sorry to hear that your son is still dealing with this, but I'm glad that his BP was normal.  I don't have any advice, but we're also dealing with what I think is a fungal infection, on E's scalp.  She has a small red itchy patch on the top of her head, and she won't stop scratching it, so now I'm concerned it will develop into a bacterial infection too.  It hasn't cleared up with a week of anti-fungal and anti-bacterial creams.  We were just planning to show it to her GI doctor when we see her a couple of weeks.  Do you all think that her GI will know how to treat it, or would a dermatologist be better?  It seems like GI's must see a lot of this type of skin stuff with their patients.


----------



## Maya142

pdx - any chance it could be psoriasis? There are a few members on here whose kids have psoriasis caused by Remicade. I would take her to a dermatologist if you can.


----------



## Mr chicken

Second dermo is better
Lp has a lot of skin issues 
The Gi always tells him you really don't want me looking at that 
You want the dermo


----------



## crohnsinct

pdx - could be the start of psoriasis.  Biologics are used to treat psoriasis but some people have a paradoxical response and actually get the psoriasis.  The scalp is a pretty popular place for it.  However if it hasn't spread much and isn't scaly it could also be fungal.  My younger daughter gets fungal patches in her scalp and believe it or not witch hazel or Listerine both help...love our derm. 

You can start by having your GI look at it because yes they are very familiar with skin issues with IBD and biologics.  O was seeing a derm and being treated for infected eczema when the GI saw it he knew it was Remicade induced psoriasis and he sent us to the derm.


----------



## theresad

@tesscorm I'm sorry - that's SO annoying! Fix one thing, and it creates another problem. It's like playing a game of whack a mole.

My son had a pesky cyst infection behind his earlobe that started in January. GI thought it could be folliculitis, referred us to the derm, and derm said it was an inflamed cyst - likely due to the lovely combo of the Imuran and Entocort. He took ABX, went away, stopped ABX, and it came back. Did that twice.

Then it returned again in July, right before he started Remicade, so now we're on the THIRD course of ABX since January. This time, Minocycline 100mg BID for 30 days. Derm wants to consider removing the cyst, but couldn't do it until the infection was gone. We have another appt next week to see where we are.

It sounds kind of similar to what's happening w/ your son - where you just can't get things resolved for good. I don't know what advice to give except I agree w/ others to go see the derm, who will know exactly what it is, and the best way to treat it. For us, I'm just hoping that once we taper Entocort (after his last loading dose) and can start to drop Imuran down, this thing will finally go away. IDK what's going to happen when he's done with this round of ABX, so we're on the wait and see plan.

My son is also now starting to get seasonal allergies (since starting Remicade), which is super weird and driving him bananas. I'm kind of afraid to add any OTC stuff on top of everything else he's taking, but he's trying to work part time, and is getting really aggravated with constant sneezing and runny nose. Yesterday he came home from work totally annoyed that he could barely get through the day. 

On the chest pain, I wonder if a chest X-ray would be in order - if he's got a fungal thing going on elsewhere, maybe worth digging a little deeper to at least get some peace of mind on that front.

It is so hard to carry on with a "regular" life with all this stuff that happens. I really feel for these kids, they have to make alot of sacrifices and it's really unfair and hard also for you. Sending hugs and support your way.


----------



## Mr chicken

Seasonal allergy meds should be an issue with biologics 
Ds has severe allergies including seasonal allergies
Meds are a must and work well


----------



## Catherine

theresad said:


> @
> My son had a pesky cyst infection behind his earlobe that started in January. GI thought it could be folliculitis, referred us to the derm, and derm said it was an inflamed cyst - likely due to the lovely combo of the Imuran and Entocort. He took ABX, went away, stopped ABX, and it came back. Did that twice.
> 
> Then it returned again in July, right before he started Remicade, so now we're on the THIRD course of ABX since January. This time, Minocycline 100mg BID for 30 days. Derm wants to consider removing the cyst, but couldn't do it until the infection was gone. We have another appt next week to see where we are.
> 
> It sounds kind of similar to what's happening w/ your son - where you just can't get things resolved for good. I don't know what advice to give except I agree w/ others to go see the derm, who will know exactly what it is, and the best way to treat it. For us, I'm just hoping that once we taper Entocort (after his last loading dose) and can start to drop Imuran down, this thing will finally go away. IDK what's going to happen when he's done with this round of ABX, so we're on the wait and see plan.


My youngest is taking minocycline 100mg for cystic acne.  It a 3 month course.  She is also using a cream called Epiduo.


----------



## DustyKat

Ugh! Jock itch, what a pain in the…. 

I hope S can soon find some long and lasting relief, bless him. :heart: 

Just out of curiosity, and not suggesting he is doing the wrong thing but, does he wear a jock strap and/or protective cup? If so and if he is laundering them do you think he is washing them thoroughly enough? 

Dusty. xxx


----------



## awmom

It has to be so frustrating for these kids to have so many doctors appointments....and to have to ask for time off work is so difficult.  I know it was the case for N this summer, so he finally said he would quit a week early and tried to schedule appointments for then....of course, that didn't exactly work out.

So sorry he is dealing with the jock itch....and hope you find a remedy soon!!  About the chest pain, since it seems to be caused mainly when taking deep breaths I would think it is something muscular as happy said.  That happened to me and it took a couple of months to resolve.  But I think first testing with anti-acids to rule out heartburn is the way to go.  I hate it that there always seems to be something they have to worry about.  Let us know what the derm says.


----------



## Tesscorm

Sorry for the delayed reply …  just had a few things going on with my parents this weekend which turned my attention from S. 

Happy – I did come across some info re costochondritis but this seems to usually affect the left side and, while S usually describes his pain as a general tightness when he inhales deeply, he does indicate a particular area on his right side.  Not really sure where we stand with this now…  one day or two, it seems better with the Nexium, the next he says it’s back. :thumbdown: 

Now he’s feeling that the rash actually feels worse/burning when he uses the cream. :ywow:  I couldn’t buy him antifungal soaps (you need prescription) but I bought Dove and Selsun Blue (read that both can help).  Pharmacist said they won’t help but can’t hurt.  He’s only used them a couple of times so far and says it feels better than when he uses the cream?  So, for now, soaps and no cream…  Because it felt a ‘little’ better, he wants to wait before make derm apptmt.  (And, through all this… he says he still can’t see any visible sign of a rash, ‘maybe’ a bit pink if that! )

Oh, and re the jock strap – that was one of my first questions too!  - hasn’t been using one for the last month or so.  He’s been playing only ball hockey lately and only uses the protection with ice hockey.

He finishes work in two weeks, so one obstacle will be out of the way… of course, then he starts school.  If all else fails, his next GI apptmt is September 20-something; we can mention the chest pain and can ask for a derm referral then and there!


----------



## Maya142

Tess, M and S have had costonchondritis on both sides (and sternum pain). It did cross my mind when you mentioned Stephen had chest pain, but if Nexium made it go away I would've guessed it was heartburn too.

Both my girls have complained of chest tightness when breathing with costochondritis ("it hurts to breathe" is what they say). The tightness sometimes bothers them just as much as the pain. 

 Unfortunately, there's not a whole lot we can do for it - I'm guess NSAIDs are out? We use ice and heat and Voltaren gel (and they both take NSAIDs). If it's really bad, then pain meds.

Sorry to hear the rash is worse, it sounds miserable.


----------



## Tesscorm

I'm glad his next apptmt is coming up!  Contrary to how it may seem at times :lol:, I really am not a huge worrier when he tells me about 'one' symptom and I tend to let things go a couple of weeks (or occurrences) before really worrying but, it does begin to worry me when there are too many unanswered questions, one following the other...  rash, chest pain, BP (even tho it was good last time), etc.

With your daughters, does the costochondritis just feel better after a some time?


----------



## Maya142

Yes -- mostly. We have had to go to steroids other times, but in those cases they also had other joints flaring, generally hips, SI joints etc.

Some rheumatologists will inject the sore spots on their ribs with steroids. We've never tried that because both my girls think it sounds too painful. 

The other thing that sometimes helps is Lidoderm patches. Numbs the pain for a little while. They're prescribed either by pain management or their GP.


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## kimmidwife

Hope you get some answers!


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## Tesscorm

S had his GI follow-up this morning - all GOOD!   All lab results within normal range.

We're no further along in determining exactly what is causing the chest pain though.  GI also thinks muscular or costachondritis.  But, as S feels it is improving, GI said to just wait and see.  If it continues/worsens, then he'll refer S to rheumo.

I mentioned in Clash's thread about the missing CRP/ESR numbers...  GI does run them at every other infusion, but when I asked for the latest results, the nurse sent me the labwork from when S went to ER (re chest).  Surprisingly, CRP is not always standard in ER labwork.

Interesting, GI did ask if S would be like to participate in a nutritional formula study of adults with IBD...  I'd like S to do it, the more studies, the more we know about crohns!  But, I need to get the particulars...  with S being away at school, it may not be feasible.

Just a quick, good update!


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## theresad

@Tesscorm - so happy for you guys!! YAY!!


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## Tesscorm

OMG, again, spoke too soon.  

After GI apptmt, S had follow-up with cardiologist.  At last cardio apptmt, S had an ultrasound and all showed clear.  As cardio had not seen the original x-rays from ER (that had initiated the referral), he said while he was 99.9999% sure he wouldn't see anything on x-ray that he hadn't seen on ultrasound, to be 100% sure, he would review x-rays and schedule follow-up (today).  I didn't go to cardio as it wasn't close by and thought I didn't need to miss more work just to have cardiologist say 'yep, as I thought, all good'.  Well, now...  cardiologist said given what he saw on x-rays, he did another ultrasound and now wants to schedule an MRI. 

Needless to say, I'm so mad that I didn't go and now worried again about this.   S is again worried and frustrated because it means more school missed, etc.  We're supposed to be called within a week for the MRI apptmt....


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## my little penguin

Hugs
Hope the cardio is just being overly through since he is rushing the MRI but not admitting and having one done today .


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## theresad

@Tesscorm, hang in there. Hopefully it's just a precaution and better to go through the additional test and cover all bases. I am sure it's so annoying to have yet another test to schedule. It's definitely understandable to feel frustrated. But PLEASE give yourself a break - you can't be everywhere, all the time - don't let yourself feel bad about not being at the appt. I admire you for stepping back and letting your son handle some things. Even if some times you're going to wish you were there. I need to learn to do that! It's a GOOD thing!


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## crohnsinct

Bet if the cardio was as cute as the GI you would have been there 

No I am not insensitive...just trying to make you laugh...but come on...it's true!  Admit it!


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## Tesscorm

I will hold on the 'not admitted, so not too serious' thought!!  

And, two steps forward, one back in 'letting go'...  it'll be awhile before he goes to an apptmt without me again! :yfaint:  I specifically went to Gi apptmt because I wanted to talk about chest pain - just picked wrong doc!

And, CIC!!  :lol:   Had that been the case, then I surely could've justified a 'vacation' day!  :ytongue:

S is so upset!  Only thing dr told him was not to worry, he still believes all will be fine.  But, I, on the other hand, have all kinds of instructions - absolutely no alcohol, no red bull (or similar), no sports, etc, etc.  This is homecoming weekend!   and his hockey starts up next week ...  he is not happy.

Trying to keep a lid on the worrying but it'll be hard over the weekend!  I'll be texting him with every possible stupid excuse...  just to be sure all is good!  "honey, it's a little breezy here, how's the weather there?'  :lol:

My dad is having leg angioplasty done Wednesday in preparation for having a toe amputated in the next couple of weeks.  My mom will be hurt/upset if I don't take time to help her at home with my dad but, don't want to worry her by telling her I need to take time to go to MRI and follow-up...  then hubby is having partial knee replacement in December so was saving vacation days for that... ugh, luckily my work is pretty decent but, seriously, when it rains, it pours! :ack:


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## crohnsinct

Tesscorm said:


> I specifically went to Gi apptmt because I wanted to talk about chest pain


OH!  SURE!  Any excuse...you are shameless!


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## Tesscorm

:rof: :rof:


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## Maya142

Really sorry to hear this Tess. Fwiw, we've gone down the cardiologist road before -- M had a very high heart rate, sometimes irregular. They told us if they found anything in M's heart (they were looking for inflammation - pericarditis), they would admit her immediately. She had an echocardiogram that same day (no MRI though). Luckily, they didn't find anything and decided her high heart rate was caused by chronic illness.

Do you know what they saw on the x-ray? Or what they're looking for in the MRI?
Sending big hugs :ghug: hopefully the cardiologist is just being thorough.


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## Clash

Tesscorm, I hope the MRI goes well. I've been trying to check in since you first mentioned S's issues as C has had one doc and one nurse (separate locations, first school mandated physical second while in hospital after resection) hear a clicking sound on stethoscope but follow up with regular GP first time and surgeon second time both resulted in "I don't hear it" and not concerning. At least the testing may put his mind to ease, that's what I'll be hoping for anyway!

C has has like Maya!s M had tachy on occasion as well.


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## Tesscorm

What they found on x-ray was enlargement of right ventricle.  (Initially, Stephen told me 'inflammation'...  not sure if I had mentioned it earlier.).  ECG and bloodwork done at ER was normal.

When we went to cardiologist, they did another ECG and ultrasound.  At the time, all was fine.  Although cardio hadn't seen x-rays that prompted the referral, he'd said 'x-rays' were the most basic of imaging available for this and, while used in ER departments, aren't used for any dx by cardiology.  Ultrasound provides much more detail than x-ray and ultrasound showed all was completely normal.  However, although he was certain he wouldn't see anything contradictory, as he hadn't seen the x-rays that had started this, he was going to have a look at them, and confirm (today's follow-up).

But, now, for some reason, when S went today, they did another ultrasound and cardio said he'd like to follow-up with MRI.  But, his heart rate was very good.

Unfortunately, I know nothing more! I have no idea what he saw.  S says dr said his heart rate was good, dr 'felt around' and said not to sorry, he just wants to be sure but that he still felt all would be fine.

So, I'm flipping back and forth...  thinking that I'm making a mountain out of a molehill as all other signs point to this being some glitch and then thinking 'but it's his heart!'... :ywow:  Hopefully, MRI will be scheduled quickly!  (Thank God school is less than two hours away... easily manageable.)


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## awmom

You have so much on your plate Tess, so you must give yourself a break!!!   It is mainly the next appointment with the MRI in hand that will be the important one.  Hopefully they will not find anything!  Does he at all get out of breath or get dizzy?  How frustrating it must be for him....but I hope he listens to mama!!  Hopefully he will get the appointment soon, and hang on the the docs word to not worry.  N also had to be monitored by a cardiologist for a couple of years due to an irregular heartbeat in the first year after diagnosis.  

Hang in there Tess.....sending hugs.


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## pdx

So sorry that this remains unresolved.  I hope that the MRI gives the doctors a clear idea of what's going on (and that it turns out to be nothing!)


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## kimmidwife

Tess,
I am so sorry you are going through this now. Waiting is never fun but it really does sound like maybe the cardiologist is just being overly cautious. I do agree if it was something serious they would admit him for further testing. Anyway hope you get it scheduled quickly and things her figured out fast.


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## Catherine

We have the heart tests done as well.  They were order by a neuro.  No MRI but ultrasound and 11 led echo.

Any dizziness or fainting with exercise?

It standard not to allow exercise or sport while doing testing.


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## xmdmom

"Unfortunately, I know nothing more! I have no idea what he saw." <-- this is so difficult for a mom and a situation that I can definitely relate to.  

So many tests get done these days and often one test leads to the next one to follow up on an incidental minor variation, just to be extra careful.

Hope he gets the MRI soon and it ends up being normal!


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## Tesscorm

Catherine - no dizziness, etc.  He's had three ECGs so far (at ER and at both cardio apptmts - all were fine).  This started in July and, until a couple of weeks ago, was playing on two hockey teams without a problem.  He's mentioned 'tightness' but, he thinks the tightness is more a result of opening up his chest with a deep breath (ie muscular tightness or costochondritis)??  And, when we discussed with GI, before cardio apptmt, S said that it is improving, albeit slowly.

S says cardio did not say he should avoid anything (which surprises me too)?!?!  But, I spoke with S and told him, while it's likely an unnecessary precaution, these are sensible given the testing.  So, I've told him no alcohol, no red bulls (or other similar drinks - I don't think he drinks them but, just in case), nothing else 'recreational'! (again, just in case) and no sports!

xmdmom - ugh, neither of us had expected the appointment to go this way at all!  If I'd had any inkling at all, I would've gone and, if I absolutely couldn't go, I would, at least, have prepped S with questions...  But, I imagine, when the cardio said he wanted to run MRI, S was like a deer in the headlights!

And, I know you're right re the testing.  I've been there myself - spot on mammo, led to HD mammo, led to inconclusive u/s by technician, led to dr doing her own inconclusive u/s, leading to MRI determining it was normal but 'denser' tissue! :yfaint:  Over the course of 6 worrisome weeks!  This thought is helping keep a lid on my worry!   It'll be there until I know for certain but I also do think that it's possible the cardio is just being very cautious.  

I just wish I knew what he saw on x-ray that precipitated this...  although, knowing really wouldn't change much at this point.


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## Maya142

Sending hugs Tess:ghug:
Hang in there! Thinking of you.


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## crohnsinct

Maybe he didn't see anything at all and that is the problem!  Maybe the x ray didn't visualize the area he really needs a good look at.  Maybe just maybe this is why he is ordering the MRI...because he doesn't feel comfortable releasing S until he absolutely see's the area he needs to.


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## Tesscorm

That's exactly what I told S.  Because that's exactly what happened with my mammo...  mammograms showed 'something' but u/sounds didn't.  Testing continued until they determined what it was.  And, that's what I'm telling myself and what I told S.  X-ray obviously has shown something but, possibly, ultrasounds are not seeing it??  I don't know enough about imaging and the differences between them to know if this actually makes sense but, for now, this logic is working for me. :blush:


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## my little penguin

Tess
Same thing happened here
Mammo saw something
But thankfully the place just sent you out and then a short wait to go right back in for ultrasound with a doc
No waiting a week and no tech 
Still scary though


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## Sascot

What a worry, definitely worth hanging onto not needing admitted. Better safe than sorry, not sure there's much more room in our brains for more worries crowding in! Hope the mri doesn't take too long.


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## kimmidwife

Tess,
Any news on when the MRI will be done?
Just thinking of you and S!


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## Tesscorm

Nothing yet.  Left a message at office this afternoon but didn't get a call back.


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## Tesscorm

MRI booked for Oct. 25.  Pain hasn't changed.  In the meantime, as it's more likely (I'm sticking with this thought!) that it's costachondritis, we're going with treating that for now.  He started physio yesterday for an old shoulder injury and I told him to mention costachondritis.  Therapist gave him some exercises for his chest - hopefully, he'll start to see improvement even before the MRI!


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## kimmidwife

Fingers crossed for it just to be a simple fix!


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## pdx

It's seems likely that that's all it is.  Fingers crossed!


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## Jmrogers4

Yep that sounds good to me, let's go with that.


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## Maya142

Is he using heat and ice Tess? We also use Voltaren gel, but he'd have to get his GI to approve that probably. Lidoderm patches are another option.

 Both my girls have done PT for costochondritis. Sometimes it has worked, other times not so much. They do both have pretty bad arthritis though, so hopefully it'll work for Stephen.

Good luck!!


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## Tesscorm

So now he's rehurt his already injured shoulder! :ywow:  Said he slipped and fell Tuesday evening (hubby thinks he may have played hockey and didn't want to tell us ).  Either way, he said it sounded/felt like his shoulder popped out and back in??  Not sure it can happen exactly like that but, whatever did happen, it's now incredibly sore.  Went to get sling, etc.  Back at physio again today.

He'll be home for a week in mid October, he's going to see his GP and see about a referral to a 'shoulder' specialist.  This injury just keeps happening...  heals up a bit, for a while and then something injures it...  hockey, weights, a fall, etc.  Hubby thinks he may have to stop hockey  or he'll end up with permanent damage.  Hopefully, it won't come to that.

Wish he were home... I'd feel better being in control of all of this!


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## crohnsinct

Tesscorm said:


> ... I'd feel better being in control of all of this!


Of course you would...look up the definition of control freak and pretty sure it says "see Parents of Kids with IBD member list!


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## kimmidwife

Tess,
A shoulder can pop in and out by itself. If it doesn't pop back in that is extremely painful and an emergency. If it keeps happening he may need to get it fixed surgically.


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## Tesscorm

CIC - :rof:  isn't that the truth?!?!?

Kim - Yes, that's what my husband is worried about.  Other than the first time, when S had to go to ER to have it put back in place, I'm not 100% sure it's literally popped right out and back in??   But that is how S describes the pain/feeling/sound when it's been reinjured.  I think this is the third time (at this severity) and is an area that gets 'sore/hurt' easily (which is why he had already gone to p/t earlier on Tuesday)...

We've never followed up with an ultrasound, specialist, etc., mainly because it would feel better and then S would want to 'wait and see' but, I think he's finally fed up with the repeated injuries.

Now to find a specialist near his school...


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## Optimistic

I hope that young man catches a break!


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## Tesscorm

Getting so annoyed, so many runarounds and no answers.

Chest pain back!  Never completely went away but was a bit better.  Now S says hurts more than before.   Said pain running across his ribs, towards his back (on right side) seems to precede worsening chest pain.

So, where do we stand with shoulder, chest, ribs, heart...?!?!?

Cardio follow-up tmrw, I'm still 90% sure it will not be heart-related.  

S has gone to massage therapy for chest/ribs and shoulder.  Therapist said she can feel inflammaton on two ribs.  She had him do different movements, turning neck, etc., and she can feel his chest contract inwards at certain times.  She believes he is compensating for his shoulder and it is causing the chest/rib pain.  But would this cause inflammation (and can inflammation be felt?)?

S finally had x-ray done on shoulder but, by that time, the shoulder wasn't really hurting... so X-ray didn't show much of a problem.  Report said 'some joint space narrowing', GP secretary/nurse said this wasn't an issue.  (Anyone here know differently??  ie any association with arthritis, flare, etc??)

X-ray and referral sent to ortho surgeon but, because x-ray didn't show any/much of a problem, shoulder apptmt in Oct 2016!!!  WTH?!?!?  Called office, explained his chest/rib pain and that therapist thought it was being caused by shoulder.  Ortho staff said they don't treat chest/ribs, even if the problem is caused by shoulder.  Based on his x-ray, they can't book an earlier apptmt!  And that we should speak with GP about a referral to a different specialist (didn't say which, we shud speak with GP)!  Ugh.

(Makes it soooo much more complicated with S being out of town!)

So, need to make another apptmt with GP and get his thoughts (last time, he thought chest pain was muscle strain) and new referral.  But to whom?  Any thoughts?  Rheumi?

At last GI apptmt, when S mentioned the chest pain, GI mentioned could be costachondritis (but he didn't examine S's chest in any way).  Said if it didn't go away, he could refer S to rheumi.  Should I just go with this?  Or wait for GP apptmt?  (GI referral is a phone call, GP apptmt is another trip home for S.)  Could there another specialist other than orthopedic surgeon or rheumi?  

I just want to find the right specialty!  I'll go to as many drs as I need to but, it's so difficult and frustrating for S to make these apptmts from out of town!  Of course, better safe than sorry but, already the cardio has been 4 or 5 apptmts (between follow-ups and testing).  I would like to minimize apptmts with the 'wrong' specialty.  At the same time, I want to get moving on this!  S's chest started hurting in July and we're still only ruling out Possibility No. 1 (heart)!

I guess this is more just a rant!  Just getting frustrated and I feel terrible for S because I know he's in pain and it seems we're getting nowhere fast!  

But, any thoughts would be appreciated!


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## crohnsinct

I would call GI and get the referral to the rheumy!


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## Clash

Before C's CD issues and subsequent dx he had an issue with his elbow. Since it occurred during baseball we went the orthopedic route. Nothing ever found, could do exploratory surgery if we chose. But it ended C playing baseball which he had done on a high level since 8. 

I've wondered since his arthritis if this was possibly part of arthritis. His rheumatologist and GI think it probably was. He hasn't complained of that pain since starting mtx for CD.

I'd get the GI to give a rheumatologist referral, can't hurt. And if one of the other specialties finds a different causation you could cancel the rheumatologist appt.

It's so hard when you can't pinpoint causation and the experts leave you to play guess the specialty!

Hope things improve soon.


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## pdx

What a mess!  And yes, I would go with the rheumi referral, at least as your next step.  Good luck!


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## my little penguin

Fourth rheumo
They deal well in Gray Areas


----------



## Maya142

Definitely rheumatologist. He could have SpA - both my girls have lots of issues with their ribs.



> Report said 'some joint space narrowing', GP secretary/nurse said this wasn't an issue. (Anyone here know differently?? ie any association with arthritis, flare, etc??)


Joint space narrowing is common in arthritis...

I'd want to see a rheumatologist ASAP. Is there any way you can speed up appts?


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## Tesscorm

Committee has spoken - will get rheumi referral.   Spoke with S last night and he agrees as well, although I think he just wants to get on with 'something'.  

He's really down and upset about all this.  Says he can't enjoy anything - hasn't played hockey at all this season, can't play any other 'pick-up' sports with friends, can't work out at gym...  something as simple as reaching for a book or moving a certain way hurts.   And, he's unhappy that he's starting to gain some unwanted weight because he's not doing anything physical.  He's really been dealing with one thing or another since May (first rash, overlapping with chest pain in summer) - you know how it is, frustrated with not feeling well, with worry hanging over him, etc.   Broke my heart seeing him so down yesterday.

But, I tried to tell him, we're really no further behind...  I expect the rheumi referral will be quicker than the ortho, so...  really, instead of wiating for the ortho apptmt, we're really just switching specialists and will wait for the rheumo...  but, I know, cold comfort.

At least we can completely rule out (I hope!!) his heart this afternoon (yes, cardio apptmt on a Saturday!) and I'll send email to GI this weekend.  Hopefully, we can get rheumi referral quickly!  

Thanks for your input - it's such a relief to know I can always get real advice and support here! :hug:


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## xmdmom

Where is the pain located? How long does it last when he gets it? How often does he get it?  I saw "reaching for a book" caused the pain, and you mentioned "breathing" before..  I think.  Are there certain things that he knows will always cause it?


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## Maya142

My kiddos used to say "Mom it hurts to breathe!" when they had costochondritis. We used heat, ice, lidocaine patches and voltaren gel.
I hope you can get in with a rheumatologist quickly! Poor S, I'm sure all of this is very frustrating.


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## awmom

Nothing to add, just sending warm thoughts.  It's so frustrating for these kids who would like nothing better than just live their lives without health worries/issues getting in their way!  I once had costochondritis and it hurts like the dickens!  I hope you get some answers from the rheumy soon!!


----------



## CarolinAlaska

Tesscorm said:


> Committee has spoken - will get rheumi referral.   Spoke with S last night and he agrees as well, although I think he just wants to get on with 'something'.
> 
> He's really down and upset about all this.  Says he can't enjoy anything - hasn't played hockey at all this season, can't play any other 'pick-up' sports with friends, can't work out at gym...  something as simple as reaching for a book or moving a certain way hurts.   And, he's unhappy that he's starting to gain some unwanted weight because he's not doing anything physical.  He's really been dealing with one thing or another since May (first rash, overlapping with chest pain in summer) - you know how it is, frustrated with not feeling well, with worry hanging over him, etc.   Broke my heart seeing him so down yesterday.


I can really relate to watching as your kids get down.  Last weekend it just broke my heart to hear J crying from the other room.  Sometimes they feel like they will never get better.


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## Sascot

Hope the rheumi appt can be made quite quickly. Hard when it's impacting every activity. Thinking of you both


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## Tesscorm

xmdmom - he says it hurts when he turns his head to the right (it's his left shoulder that he dislocated and which causes on-and-off pain), whenever he bends over a bit and reaches for something, when he takes a deep breath (not regular breathing) and when he coughs.  When he does any of these, says it hurts sharply and for a few minutes, then subsides to a dull ache.  But, he says it happens numerous times during the day so it seems like he constantly in pain.  Doesn't hurt when he's just sitting/lying still.  Doesn't hurt when you touch area.  Said it doesn't hurt any more or less after he's been still for a while (ie in the morning).  Once it a while, his chest 'pops' and he said this brings relief.  Also, while at massage, therapist was pressing down on his chest and he said it felt as if there was pressure there and if she could've 'pressed down more', that the pressure would have popped and he would have felt relief??

Maya - I told S about the lidocaine patches - do you need a prescription for these?  He left right after cardio apptmt so we didn't have time to go look in pharmacy.

Carol - broke my heart thinking about you hearing J crying.   I'm so sorry she's have such a tough, tough time.  It is so very unfair. :ghug:


So, where we are now...  cardio said his right side of heart is slightly larger, however, he said it's so slight, he believes it's just the way S is built.  Doesn't think it's a problem and definitely not related to the chest pain.  He did say he'll see S again in a years time, redo ultrasound, etc. but that he doesn't expect anything to change.  And, no restrictions in his lifestyle (hockey, etc.).  We did ask his thoughts on S's pain, he examined S's chest again, listened to his breathe a number of ways, and thinks muscular BUT...  stressed it's not his specialty so not really giving an opinion.  Told S to follow up with GP.

S wants to just go with rheumi referral for now.  If there's time (ie if rheumi apptmt is in two or three months), maybe he'll book an apptmt with GP over the Christmas holidays and see what he says... (but, in the meantime, wants to move ahead with rheumi).


----------



## Tesscorm

Oh, also, FWIW...  he went to health store early this week and bought Fast Joint Care Plus (Genuine Health).  He was told this would help help joint inflammation and lessen pain (with no nsaids) but it would take about 5 days to start working.  Coincidentally??, he said the pain seemed a bit less today.  But he also went for massage therapy 3 times this week and one or two hot yoga classes...


----------



## Maya142

Our pain management doctor or rheumatologist prescribes Lidoderm for M.
I'm so glad that it's not his heart. Hope you're able to get into the rheumatologist soon! Can you ask to have him put on a cancellation list? That's what we do when trying to get in to see new doctors.


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## xmdmom

Where exactly is the pain located and is there any radiation of the pain?

I would think costochondritis should have pain on palpation.

The description above re: massage makes me wonder about trigger point pain in a chest muscle.  

I think less likely would be a nerve related pain but usually there is tingling or numbness.

I found this





> Another common cause of noncardiac chest pain is musculoskeletal problems located anywhere on the chest wall. The chest contains many muscles, bones, tendons, and cartilage (the rubbery tissue that connects muscles and bones). Strains or sprains to any of these areas can cause chest pains. Chest pains associated with musculoskeletal injury are typically sharp and confined to a specific area of the chest. They may be brought on by movement of the chest and/or arms into certain positions, and often are relieved by changing position. These pains can be triggered by pushing on part of the chest and often become worse when taking a deep breath. These pains usually last only seconds, but can persist for days.


http://ubbmc.buffalo.edu/bmc_pain_treatments/noncardiac_chest_pain.php

Sorry I didn't look at all the posts but I was wondering what the rheumatologist was for.


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## Maya142

Hmmm actually xmdmom is right - costochondritis generally does hurt with palpation, at least for my girls. But so does trigger point pain. My daughter has had trigger point injections in her neck and generally the area is very tight and sore. When pressure is applied it does hurt but it can also feel better (I know this doesn't make much sense).

xmdmom, we're recommending a rheumatologist because costochondritis is common with AS. My husband and both my daughters (all three have AS) have all had it, many times. Given that S is male, had IBD and is a young adult, it's worth checking with a rheumatologist.


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## my little penguin

Same here DS has JSpA and chest pain has happened a few times due to this


----------



## xmdmom

The popping made me think of precordial catch syndrome.

"Although deep inhalation during a PCS attack will likely cause an increase in pain, many have found that forcing themselves to breathe as deeply as possible will result in a "popping" or "ripping" sensation which quickly and completely resolves the PCS episode."  ..."It is speculated that it could be caused by the pinching of a nerve and may be due to spasm of intercostal muscles fibers "http://www.precordialcatchsyndrome.com/

I think a rheumatologic issue is an unlikely cause given the description but this is my personal opinion (not medical advice!).


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## Tesscorm

When S turns his head to the right, he can feel pain/pull about an inch or so below his collarbone, on right side.  And, the rib pain, which I think happens when he turns his neck and/or reaches out, runs along his right side ribs, about mid height of ribcage, towards his back.  Keeping in mind that the chest pain 'flares' do lessen at times (ie worse in August, improving in Sept/Oct, worse now) - he said, thinking back, he's realized the rib pain precedes the worst of the chest pain by a few hours or day.  He noticed the tightness/rib pain on last Friday, Saturday/Sunday his chest pain was much worse (along with ribs).  I asked him about back pain but his answer was very vague 'IDK, maybe a bit, sort of', so I'm thinking there's not much back pain.  The chest pain seems to be general pain across most of his central chest, ie sternum area.

Couple of other comments from therapist - massage therapist said she felt the rib inflammation and that she could feel his ribs extend/shift outward and his chest area contract inward when he moved his turned his head to the right.  This didn't happen when he turned his head to the left.  As he dislocated his shoulder two years ago and it's been an on/off issue, she thought two years of compensating/adjusting for shoulder pain could have gradually caused this rib/chest issue.

Trigger points... can they be felt by therapist?  Like a knot?  Massage therapist said she felt that his chest/ribs felt 'better' when he went for the second and third apptmts.  

Maya - 





> When pressure is applied it does hurt but it can also feel better


 - although S said touching a specific point doesn't hurt, I think your comment is similar to what S said about additional pressure by therapist would have brought relief??

xmdmom - at S's last GI apptmt, he mentioned the chest pain but it was when his pain seemed to be improving.  GI mentioned costachondritis and offered to refer to rheuma if the pain worsened or didn't go away.  Re PCS - I just quickly read your link but, I don't think that's it.  S's pain doesn't completely go away and it feels better when he's lying down or sitting.

I can see the similarities with AS and/or JSpA and certainly the connection with crohns, etc. so I don't want to stick my head in the sand about this but I can also see so many symptoms pointing to a muscular issue!  :ywow:

If the therapist is correct and this is all being caused by compensating for his shoulder and not arthritis, would this cause inflammation?  And, if yes, would a rheumatologist be able to treat this?


----------



## xmdmom

Compensating for an injury can cause muscle imbalance and strain and cause trigger points (and these can be felt by a physical therapist or a massage therapist).  Trigger points feel painful and also better when pressed depending on the pressure. I wouldn't imagine that an inflamed joint would feel better with pressure.

(I read that there can be a dull pain following the sharp pain of the precordial catch.)


----------



## CarolinAlaska

I want to add my thought that he could have a pinched nerve from the dislocation reduction.  There are lots of nerves that go through that area, and nerve injury is a risk of reduction.  Have you considered a chiropractor?


----------



## Maya142

I'd get it checked out by someone - a rheumatologist or an orthopedist. An orthopedist would be able to tell you if it's an injury and if not, they'd likely refer you to a rheumatologist. Alternatively, you can go the other way and go to a rheumatologist first. 

I don't think anyone can tell you for sure that it's a rheumatological issue or an orthopedic issue just by reading about his symptoms (unfortunately!). I think you just have to decide which you think is more likely (or which appt. you can get faster  ) and go from there!

Some of the stuff you say does sound like trigger points (read up on Myofascial Pain Syndrome) and other things sound like costochondritis. It could also simply be a muscle issue from compensating for his shoulder (though I would expect a PT to pick up on that). 

Does he have any other symptoms of AS? Stiff lower back? Morning stiffness? Stiffness or pain when trying to sit for a long time (for a movie or a class, for example)? Pain that gets better with activity? Any redness, swelling or pain in other joints?


----------



## xmdmom

I didn't say "don't go to a rheumatologist."  

Hope it gets sorted out soon Tess!


----------



## Tesscorm

Well, since apptmt with orthopaedist is a year away :yfaint:, I imagine it'll be quicker to see rheumatologist!    I did try to get on cancellation list for ortho but was told there were 200 names!  I think, because his shoulder x-ray didn't show a problem, he's probably a low priority call up.  But, from what secretary said, they don't 'do' chest and ribs anyway. 

Maya - I've specifically asked him about back pain and morning stiffness, his answer was 'no', other than his vague answer about his back today.  No other joints affected.  But, yes, he does feel his chest/rib improved when he played hockey in the summer (pain wasn't as bad at that time though) and from yoga.

xmdmom - yes, totally understood you weren't saying no rheumatologist. 

Carol - S did ask about a chiro.  My worry was that it could worsen the problem if we aren't completely sure what's causing the pain.  If it is costachondritis, manipulating the sternum/joints might worsen it???  If I can get a rheumi apptmt soon, hopefully, we can rule out (or in) the costa and then see if a chiro is the right fix.


----------



## Tesscorm

Oh, btw, just to add a bit more grey...  S also separated his right shoulder three years ago...  perhaps I'm focussing on the wrong shoulder completely! :yrolleyes:  I've assumed a dislocation is worse than a separation but, just crossed my mind... I could be completely wrong! :facepalm:


----------



## Maya142

I know with AS going to a chiropractor is definitely NOT recommended, especially when the spine is involved. I don't know what the recommendations are for muscle problems or injuries though.


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## Tesscorm

Thanks Maya.  Perhaps I've read this here before because that was my thought when S brought it up - I just had a sense that manipulating joints might be a problem if inflammation was involved.


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## kimmidwife

Tess,
I just saw this today. We lost power Friday and since then Internet has not been working properly. I am in agreement that a rheumo might be a good start. I would get on the cancellation list for the ortho as well that way just in case the rheumo wants him to see an ortho at least you will be on the list already.


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## Maya142

Keep us updated Tess, will be thinking of you and S. 

Wanted to mention a TENS unit if it hasn't already been mentioned. M uses hers a lot and likes it. It doesn't take away the pain but it helps. We got ours from our pain management doctor, but maybe a GP could prescribe one.


----------



## xmdmom

I have found well trained experienced physical therapists to be very good diagnosticians for musculoskeletal and nerve issues.


----------



## Tesscorm

Will keep the tens unit and lidocaine patches in mind... whether we see rheumi or GP first.

And, S will continue with his therapist until we see rheumi.  If it musculoskeletal only, we should begin to see some improvement.  She is aware of all his issues and has been treating him for both shoulder and chest/ribs with both p/t and massage therapy.  Until we know something definite, he'll keep going with this, the joint supplements and yoga. Hopefully, something will start to help...


----------



## CarolinAlaska

Yes, hopefully something will start making a difference soon.


----------



## Tesscorm

Rheumi booked for Monday! Gotta say, his GI's hospital is amazing!  Cardio apptmts were just as quick!  I couldn't believe it when they called this morning with an apptmt for next week!

Anyway, am still hoping it'll be a waste of time and we're just dealing with some pulled muscles or something. 

FWIW, to those who have joint pains...  S said his chest was hurting a bit more yesterday and he'd forgot to take his Fast Joint Care Plus supplement.  He took it last night/this morning and said the pain is noticeably less today.  Just passing on the info in case this supplement really does help...


----------



## pdx

That's great!  Hope the visit gives you some answers.


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## Farmwife

Fast Joint Care Plus.......
Where do you get that from Tess? What's in it?


----------



## Tesscorm

FW, Stephen bought it himself from a healthfood store.

Here is a link to the product and the list of ingredients.  I'll be honest, while I always check ingredients, supplements, etc., I didn't in this case.  When he told me about it, he'd already bought it and was in pain.  I thought it was worth him trying to see if it would bring him some relief (hopefully, I don't regret my negligence! ).

http://www.genuinehealth.com/store/us/fast-joint-care-extra-strength#.Vk50PnarTcs

Medicinal ingredients:
 Biovaflex® natural egg membrane   500mg

AvoVida® avocado (fruit) and soy (seed) unsaponifiables (standardized to 30% phytosterols)   300mg

Bromelain (pineapple stem; 400 GDU/serving)   200mg

Other ingredients:
Cellulose, rice flour, magnesium stearate, silicon, dioxide.


----------



## Maya142

We have used Tumeric for joint pain. To be honest, we didn't see a difference, but there are some studies that say it might help. 

We also use fish oil capsules.

Before giving any supplements, Farmwife, check with your doctor!


----------



## Farmwife

Maya142 said:


> We have used Tumeric for joint pain. To be honest, we didn't see a difference, but there are some studies that say it might help.
> 
> We also use fish oil capsules.
> 
> Before giving any supplements, Farmwife, check with your doctor!


Good advice Maya! Thanks

Asking for my mother-in-law. Just had her knee replaced.:yfaint: I'll do anything to get the women moving faster! :yfaint:
Grace never took to supplementing to well. We did turmeric also but it cramped her up even worse.


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## Maya142

:lol: Farmwife! I thought you were asking for Grace! Fwiw, my husband has had both his hips replaced and he swears by fish oil. He takes kiddie fish oil which is a liquid (disgusting but he doesn't like taking pills!) and he says it really works. My girls both take capsules but skip them every now and say they haven't felt a difference.

Might be worth a try!


----------



## Tesscorm

S takes krill oil as well. However, he told me the woman at the health food store told him krill oil isn't as easily absorbed as other fish oil???  I did my research when S was dxed, do it's been a while...  Does anyone know if there's a type of fish oil that's better than others?


----------



## Tesscorm

Okay, so starting to wrap my mind around what may come from rheuma apptmt.

If this is jSpa/arthritis, what should I be asking?

1.  What are treatment options?
2.  Are their options other than meds?  ie physio
3.  Is a med used to take down current flare, ie steroids?  Or just a maintenance med and allow the flare to slowly heal?
4.  If it is costachondritis, is this always part of jSpa or AS, or could the costa be a random occurrance, perhaps related to crohns, but not to jSpa/arthritis
4.  What else?  I don't even know what to ask???

And, just a question in general...  what is the difference between jSpa, AS and arthritis?


----------



## my little penguin

http://www.spondylitis.org

Read this

spA ( he is over 16)
Has to be observed for 6 months by Rheumo inked imaging shows damage
Treatment is a 50 /50 combo
Exercises and meds 
Steroids rescue meds
Maintenance varies


----------



## Farmwife

You're awesome for asking Tess...
Grace has JIA and I don't even know the difference.


----------



## my little penguin

Any kid with any type of arthritis falls under the JIA umbrella ( think ibd )
Jspa ( 16 and under at dx )
Tendons ( entheses ) and joints are involved 
No swelling required but can happen 
No increased markers but can happen

AS damage seen on the si joint and spine/hips


----------



## Tesscorm

Thanks MLP 

If there's inflammation around his sternum and/or ribs, would this show on x-ray, ultrasound, MRI?


----------



## Clash

Xrays usually show damage, MRI can show inflammation.  That's how I think it was explained


----------



## Maya142

There are several different JIA subtypes:
Systemic
Polyarticular (which is what Grace has, Farmwife)
Oligoarticular
Psoriatic
Enthesitis related arthritis (which is JSpA)
Undifferentiated

Little kids sometimes switch categories as they grow up.

In adult SpA (diagnosed after 16) the hips or SI joints are usually involved first. Peripheral joint involvement is less common in adults but definitely does happen. People are different and I'm sure some have had rib pain as the first symptom but it is usually the lower back that hurts first.

People can definitely have costochondritis for other reasons. 

Has he been tested for the HLA B27 gene? 90% of Caucasians that have AS are B27+. The number is lower with SpA and with other races.


----------



## Maya142

Wanted to answer some more of your questions:



> 1. What are treatment options?
> 2. Are their options other than meds? ie physio
> 3. Is a med used to take down current flare, ie steroids? Or just a maintenance med and allow the flare to slowly heal?
> 4. If it is costachondritis, is this always part of jSpa or AS, or could the costa be a random occurrance, perhaps related to crohns, but not to jSpa/arthritis
> 4. What else? I don't even know what to ask???
> 
> And, just a question in general... what is the difference between jSpa, AS and arthritis?


1. Treatment is typically NSAIDs and TNF inhibitors. Sulfasalazine and MTX are used, but more for peripheral arthritis (not involving the spine). It's very clear from research that biologics work better for AS.

2. Physical therapy and swimming can really help. Anything that gets you moving (low impact is better). Also a TENS unit, ice and heat of course.

3. Steroids are used but of course, we try to avoid using them. M has been on them a LOT in the last three years. We've used oral steroids, steroid injections directly into a joint (knee for example), steroid intramuscular injection and IV steroids.

SpA (spondyloarthropathies) are a family of diseases and AS is one of them. AS is radiographic SpA (i.e. there is damage visible on x-rays in AS). If there is no damage visible, then non-radiographic SpA (we tend to call it just SpA) is diagnosed. SpA can evolve into AS over time but may not. 

They are treated the same except that anti-TNFs are only approved for AS right now, so doctors have to be creative to get them for patients with SpA. In countries like the UK, it is much harder. In the US, it's not that hard usually, but can be depending on the insurance company and the doctor. I think Canada is more like the UK in terms of strictness of the requirements for anti-TNFs but I'm not sure (anyway, thankfully S is Remicade for Crohn's!)

 The TNF-inhibitors are slowly being approved for non-radiographic SpA too and this will change soon.


----------



## Tesscorm

Thanks so much Maya!  That is really helpful!  Both your posts and MLP's link have really given me an understanding.

Well, we'll know more on Monday, although I imagine if she believes there is any concern, Monday will only be followed by further testing...


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## CarolinAlaska

Thanks too everyone for the explanations.  We see the rheumo on December 8.


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## Tesscorm

Very thorough apptmt!  Spent a lot of time with 'physical therapist practioner' (?? didnt' quite hear her title when we met) and she checked all S's joints, took lots of measurements, asked lots of questions.  And, then with rheuma.  Consensus was that they aren't quite sure yet.  He has some symptoms which might be IBD related inflammation but they're not 'textbook' symptoms and he's missing symptoms they'd likely see.  So, could be 'mechanical', musculoskeletal, lots of his symptoms indicate that the pain could be derived from alighnment, misaligned rib, etc. but, again, not all his symptoms match this dx either.  

So, rheuma is going to schedule a bone scan of his chest and SI to look for diffuse inflammation.  If inflammation is localized, more likely to be an injury/misalignment.  In the meantime, although she said she doesn't often do this, she recommended a chiropractor - said even if it is systemic inflammation, given his age, status, etc., she's not concerned re any damage from chiro.  Also suggested a manipulative physiotherapist who would be experienced with maniputing joints, especially those that have been misaligned.

If it is a rib misalignment, a manipulative p/t would be able to feel this (forget if chiro would be able to feel this as well??).

So, now, I'll try to find a chiro and manipulative p/t near his school while we wait for bone scan.

Did ask about lidocaine patches - as S's pain was 4-5 out of 10 today (was 8-9 out of 10 last week), she said to call if the pain intensified again...

All in all, no good nor bad news...  still checking.


----------



## Maya142

Interesting that she's going to do a bone scan - they are not really used any more here. MRI's are much better for showing inflammation but of course, are more expensive. I'd push for an MRI vs. a bone scan if you think it's possible.

Glad you got in with a rheumatologist so quickly - crazy that an ortho had a year wait but a rheumatologist was just a week or so?!!

We have seen a PT that did manipulations and and manual work and it did help my girls. We haven't seen a chiropractor so not sure about that.

If S's pain is a 4-5, why isn't she giving him lidocaine patches?! They're pretty harmless as far as meds go. Did you ask about Voltaren gel or a TENS unit? 

Hope you get some answers soon.


----------



## Tesscorm

I'm guessing the bone scan vs. MRI because of scheduling.  Non-urgent MRIs (ie I'm thinking in comparison to his heart MRI) can take months!!  She said the bone scan can be scheduled quickly.

And, yes, crazy about the referrals/apptmt dates.  I think there were some circumstances that contributed to that - ortho referral thru GP, rheuma referral thru GI in same hospital, ortho clinic seemed very high end, in the sense that they had 6 orthos on staff, with different specialties, extensive services like physio, chiro, sports med, etc. - likely this clinic is in demand, so more referrals going there.  Plus, S's shoulder injury didn't show damage... so low priority.     If we still need ortho, I'll look for another ortho, without all the bells and whistles' services.

Not sure why the hesitation re the patches??  I did ask re its safety with remi/crohns and she said no issue there.  Given her response, I just assumed a 4-5 level of pain didn't warrant the patch??

When necessary, S has used voltaren.  He knows to use it sparingly and, so far, hasn't caused a problem.  He also likes Tiger Balm, not sure if it works for this but, has worked for his shoulder and prior back pains.

And, I forgot about TENS. :ybatty:

But, if his pain increases again, before scan follow-up, I'll just call back for a lidoderm prescription.


----------



## Maya142

Some info on imaging. I'm sure if the bone scan shows something, they will be able to send him for further testing (if necessary). I have heard of a couple kiddos who have had bone scans to detect inflammation, especially if they can't have MRI's for some reason (one kiddo with a gastric pacemaker for gastroparesis, for example).



> Preferred examination
> Radiographs are the single most important imaging technique for the detection, diagnosis, and follow-up monitoring of patients with ankylosing spondylitis. Overall bony morphology and subtle calcifications and ossifications may be demonstrated well radiographically. The diagnosis may be reliably made if the typical radiographic features of ankylosing spondylitis are present.[3, 4, 5, 6]
> 
> Computed tomography (CT) scanning is useful in selected situations (eg, in equivocal cases of sacroiliitis and in cases in which subtle radiographic changes are present) and in the evaluation of complications.
> 
> Magnetic resonance imaging (MRI) is useful in assessing early cartilage abnormalities and bone marrow edema.
> 
> Limitations of techniques
> Radiographs are limited in detecting early sacroiliitis and in demonstrating subtle changes in the posterior elements of the vertebrae.
> 
> CT scanning is useful in evaluating sacroiliitis, but normal variations of the sacroiliac joints may simulate the findings of inflammation. Because of its high radiation dose, CT scanning is not ideal for imaging long segments of the spine.
> 
> MRI is limited by its relatively poor ability to detect calcification, ossification, and cortical bony changes.
> 
> Scintigraphy has been used to detect early sacroiliitis, but there are conflicting reports as to its accuracy.


A rheumatologist should be able to get you a TENS unit too. 

Has S tried going in a pool or hot tub? That really helps my girls when they're in a lot of pain.


----------



## crohnsinct

Well as much as we like definitive answers I guess it is good that you are on track for figuring this thing out and not waiting for that ortho appointment!


----------



## happy

It sounds as though he is being well taken care of. The benefit other than a quicker test for the bone scan is that if inflammation is present in any other joints, it will show up. Sounds like the rheumi is being very thorough and making sure that a more systemic problem is not going on.

I hope Stephen starts to get helpful treatment soon.


----------



## Tesscorm

Maya - S did a bit of swimming last year but, a few weeks ago, we mentioned that he couldn't go because of pain - now not sure if it was shoulder or chest pain.  And, unfortunately, his apt doesn't have a bath, just shower.  When he's at home, he's had baths with epsom salt and has said it helps.  But, hadn't thought of it before, perhaps the pool he goes to has a hot tub??

And, I'm thinking as you, if the x-rays show something, that will lead to more testing (MRI?).

But, a comment rheuma made was a bit ironic...  When S was going for heart MRI, had S ask his GP if GP could write a requisition to throw in an image of shoulder since it's all on the same side anyway.  (Figured it would be 'too' efficient but may as well ask...)  GP said 'no, MRI requisitions don't work that way'.  :ymad:   Today, rheuma asked if they happened to do chest images when they did heart MRI since it was in the same area!  ...shows only women know how to multi-task!  (Edit... sorry guys, I know truly not 'only' woman multi-task!  :hallo3

And, thanks for the info on imaging!  That's great info!  You should post in the 'Tips & Tricks' or '101 things your GI didn't tell you' (forget what it's called ) thread - great info to have!

CIC - yes, although we don't have an answer yet, at least it feels like we are moving along ruling 'out', if not ruling 'in' yet.  If the scans are as quick as it seemed, I'm hoping to schedule it over the holidays - save S from coming back again, just for one test.  I know it may be delaying a bit but, in the meantime, he can start with the chiro and/or p/t.


----------



## Tesscorm

Thanks happy 

I didn't really have any expectations of what would happen in this apptmt but, it was certainly much more thorough than I'd expected!  All in, we were there for 1.5 hours!  I really liked both the practitioner and the rheuma - neither was quick to jump to either dx, and were happy to answer my questions, with no rushing.


----------



## Maya142

I was going to say why not do it over Thanksgiving, but of course, that's over for you guys! 
I would only schedule the scans sooner if he's in horrible pain and can't deal with it - otherwise a few weeks won't hurt.

That info is from Medscape: http://emedicine.medscape.com/article/386639-overview#a5

There is more info about bone scans and AS in case you're interested!

Our gym has a "therapy pool" - it's warmer (90 degrees) and used for PT and aqua exercise classes. M loves going in it - she just floats around, swims a little bit etc. The hot tub is even better but he should be careful about staying in too long and getting in and out - M's blood pressure drops and she gets very dizzy. Not sure S has that issue but since he's been seeing a cardiologist I thought I'd warn you. 

M also loves PT in the water - it is easier on her body and can be a lot of fun.

I wish they'd done shoulder images when they did his heart - how very frustrating! 

Other things - a foam roller, and exercise ball for stretches, thermacare wraps or heat wraps: http://www.warmbuddy.com/products/sports-therapy-wrap/

Really hope you get some answers soon - poor S has been dealing with this for such a long time!


----------



## kimmidwife

I am glad he had a good appt. it sounds like the doctor was very thorough. Hopefully the bone scan will give some answers.


----------



## my little penguin

Second MRI 
Wish it was clearer
But at least Rheumo is looking


----------



## awmom

It sounds like she is looking at it from all angles....glad it was a good appointment and glad other measures were suggested while he waits for the tests....I'm sure he is ready to put this behind him!!! FWIW  ortho ordered a full body bone scan of N when he first had an inflamed ankle that would not get better.....that was 4 years before he was diagnosed with crohn's, and it also showed some inflammation of the ankle that was not yet bothering him.  At least it's probably a good preliminary test that can be done quickly.


----------



## Tesscorm

I am relieved that she is looking at it from different angles.  I was worried that a musculoskeletal cause might be dismissed too easily.  If she had diagnosed arthritis very quickly, without fully exploring a musculoskeletal cause, I know I wouldn't have been convinced and would've driven myself (and all of you) crazy with my doubts!


----------



## Maya142

How's S doing Tess? Any news on the bone scan? Were you able to schedule it?


----------



## Tesscorm

Haven't heard back yet.  I was going to wait out this week and call back on Monday, if I haven't heard.

In the meantime, spoke with S a few days ago and he said his chest/ribs are feeling much better (but pain not completely gone). ...  :ywow:  He's been going to physio but keeps forgetting to ask if his p/t is a manipulative p/t (I did check and their clinic has a 2 or 3 listed as mani. p/therapists).

IDK???...  was going to ask you all about the coming/going of the pain but...  of course, arthritis does flare up/down, and muscles can heal and then get strained again!  So... still waiting...

(Thanks for asking!! :hug


----------



## Maya142

Yes, pain that comes and goes and even migrates to other joints is typical in JSpA.

But it could also very well be an injury that's healing (let's hope!).
Hope you get it scheduled soon!


----------



## Tesscorm

Thanks!  Certainly I'm glad it's feeling better but I don't want him to stop going to p/t because 'it's feeling better today'!  (And, because he has exams coming up.)  This feeling better/worse has been going on since July!  But, in any case, we have to wait for scan so, if he's slacking a bit, perhaps any inflammation will show up more clearly on scan??


----------



## Maya142

Ahhh don't you love teens/young adults ? M loves playing doctor, she's recently decided she doesn't need her tube feeds even though her nutritionist said she does :ybatty:!


----------



## Tesscorm

So true!!  Right now, he's all good!  :dusty:    But, when it starts up again, he'll be frustrated, mad, sad, etc.  But, I guess that's human nature...

And, I know a BIG reason S has stuck with the shakes is that they make his life more convenient!  :lol:  No need to make breakfast when he can grab a shake...  hungry before game, no worries, grab a shake!  :lol:  I don't mind because he gets the shakes and, often, it's probably healthier than what he would've grabbed on the way.  He's even had other friends/roommates say he's lucky to have them because they 'have' to make something to eat!  :lol:  I've had to tell him it's okay to share sometimes but, WTH, they're not cheap...  I can't be supplementing all his friends! :yfaint:

Does M have to do it every night?  When S did overnight feeds, he did it 5 nights per week - it gave him a bit of a break on weekends (or whatever night he wanted).  Would it be possible for her to increase her daily calories but then cut out one or two nights?  FWIW, S was taking in 1500 cal/night.


----------



## Maya142

We're working on getting her calories up - she's eating about 1200 on a VERY good day, and about a 1000 normally. She needs 1800 to maintain her weight. Instead of doing 600 daily, we could do 1200 every other day, I suppose, I hadn't thought of that. 

If she could drink shakes, I bet she would. It's just that the gastroparesis makes it very hard to eat or even drinking large quantities. It would take her all day to drink one shake and she only tolerates Neocate anyway (which tastes disgusting).

So she definitely needs to use her tube. I think once she loses a pound or two she'll come to her senses. Since she hasn't lost yet, she thinks she knows better than the nutritionist :lol:.

Glad S is still drinking his shakes - good for him!


----------



## Tesscorm

Well, 'drinking' means he's only drinking one or two per day (250-500 calories), he was getting the 1500 cal when it was overnight feeds.  I very much doubt he would be able to drink more than one or two shakes per day.  Even though he likes the shakes, drinking more than one or two, *at his convenience*, is probably all he would manage orally.  

What is it that she doesn't like about the tube overnight?  S grouched about it once in a while but never complained too much...  although, in the last year, he was beginning to lay the groundwork for refusing to do it once he went away to school.  (We ended the overnights/started remi a few months before he left for school anyway.)  It might help her having a night or two off per week.  Having these nights off meant that S could stay over at a friends or have a friend stay over without worrying about it...  or if he just didn't feel like doing it one night, there was no worries about it.  (BTW, this is how it was suggested to us by our GI/nutritionist.)


----------



## Maya142

She's just being cranky :lol: - she says she doesn't like being hooked up while she sleeps. She's managed just fine with it for the last few months, so this is just a phase I think. It started because we stopped the feeds to see how she'd do without them - she did ok for a few weeks but when we calculated her calories, she was still eating too little to maintain her weight. 

I do think giving her a few nights off a week would definitely help - thanks! We'll try that.


----------



## Tesscorm

Yes, S would say the same thing...  smaller, crankier type complaints...  didn't like being hooked up, cud hear pump, etc.  But, yes, I do think having those couple of nights off helped.


----------



## Tesscorm

Question re arthritis/bone scan...

S says his chest/ribs are much better.  (But, this isn't the first time it's improved and then worsened again.)  If we do the bone scan when he feels 'good', will inflammation still show on the scan?  Can this be like IBD where you can have active inflammation but no symptoms?


----------



## xmdmom

I don't know for sure but I'm guessing it's better to have the scan when one's symptomatic.  A negative scan when one's asymptomatic might not rule out inflammation causing the symptoms in the past.


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## Tesscorm

That's what I was worried about as well...  I'll speak to rheumatologist's office staff to see what they advise before booking scan.

He just had the stomach flu over the last couple of days with lots of vomiting...  I was expecting him to say his chest/ribs now hurt again from the strain but he hasn't mentioned it.  This in itself doesn't necessarily rule out a musculoskeletal issue but, I would've thought the strain from vomiting would have irritated any vulnerable muscles/tendons/ligaments in his chest/ribs??

IDK...  wish I could buy my own imaging machines and just run pics whenever I want!! :lol:


(And, yes, the thought "oh no, is this 'flu' really just a flu or is it all connected" immediately popped into my head but, he says a number of his roommates and other friends have all had this in the last couple of weeks so...  I'm thinking it's just going around.)


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## Maya142

I know sacroilitis is often asymptomatic in JSpA kids. Not sure about chest/ribs? Also, I know an MRI would pick up past inflammation - erosions and such but I'm not sure about a bone scan since my kids have never had one.

It's probably best to ask his rheumatologist and see what she says.

Hope he feels better - the flu is miserable!


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## kimmidwife

Sorry to hear! Hope he gets better quick! Hoping you guys get some answers soon!


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## Sascot

Hope he feels better soon. So frustrating when you don't have a clear answer for pain!


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## Tesscorm

Like this hasn't been said enough times here....  GET COPIES OF RESULTS!!!  :ymad: :ybatty: :ymad:

S had an infusion and had labwork Aug 1.  His GI said labs at every infusion when S started remi (but later changed to every other infusion as told to me by remi coordinator), so after Aug 1, his next labwork would have been end of October.  I've been slacking slightly in that I haven't been asking for EVERY test result (he's been stable, it's been two years, etc.) but I do ask once in a while.  Well, now was the 'while'... and guess what - no labs done since Aug. 1!!! :ymad:

I'd started calling for results almost a month ago; because of his chest/ribs, I'd wanted to see if labwork was showing anything (and, it felt like it had been a while since I'd asked for copies anyway).  Called early Nov but labs from end-Oct not in yet... told to call back in a week.  Called the next week but happened to call the day the GI office was closed.  Called the next week, assistant surprised they weren't back yet but said sometimes there are delays, call back please.  As I wasn't really that worried re the labs (ie we were seeing cardio and rheuma anyway), getting a copy slipped my mind last week.  As S now had stomach flu and he was concerned about crohns, it reminded me to get the results...  called today and no labs have been run since Aug. 1!!

I explained a requisition renewal had been missed in the past and assistant says, yes, possible...,  what date does your requisition show.  Umm, what requisition??  Whole lot of confusion as to who has requisition - apparently, we are supposed to take requisition each time, however, in two years, I have NEVER been given a requisition!   So, who has been sending in requisition???  Now THAT is the mystery!?!?? :ywow:  When the renewal was missed last time, I spoke with the remicade coordinator and she dealt with it.  She never said I should be the one renewing - she implied the infusion centre should have notified her/GI that the renewal was due!  Today, assistant told me remi coordinator doesn't even deal with this so why did she renew??  Ugh!  

I don't know the answer for how S has been getting labwork up till now!, but I believe it's been a total miscommunication - I know it's not MY misunderstanding!  I DON'T make mistakes with this stuff!  But, somehow, between GI, regular assistant, remi coordinator... no one mentioned that WE (me and S) are supposed to renew.   :ywow: :ywow:

Seriously, I have been so on top of everything since he was diagnosed, how can something like this STILL slip through!?!?!?

Now, assistant sent me a requisition and asked me to get S to go asap since no labs since Aug. 1.  And, with S's chest issues, stomach flu and his worries last night, they both have me anxious that something's been going on and no one's seen it! :yfaint:

On top of it all, when S started on remi, his GI said labs every infusion.  When the issue came up with the renewal and the infusion centre didn't know S's lab orders, the remi coordinator told me every other infusion.  Now, I wonder why she said every other infusion if she isn't even supposed to be involved in this?!?!?

I know this isn't my fault but, if something is up, I'll never forgive myself for not following up on every friggin' test! :ymad:


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## happy

Sigh, sometimes it is so hard to get simple things done in the 'system' and it takes way too much energy. Don't beat yourself up. On the bright side, this may help Stephen understand why you pay close attention to all the details of his care and why he should learn to do this too.


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## Tesscorm

Yes, agreed!  I've asked S to keep a watch on whether or not labs are run but he forgets, and sometimes I forget too. Since we have Aug.'s results, I think the only lab we missed was end of Oct. 

I'm just annoyed that after everything I've tried to be on top off, something so simple as checking on labwork slips by! :voodoo:  

Ugh, and poor S is NOT having a good time.  Hurt his shoulder AGAIN tonight at gym.   I've told him he absolutely HAS to slow down in trying to rebuild it.  This is what always happens... feels better, he moves forward too quickly, hurts it again.  Have asked him tonight to do it my way for 6-8 months - physio (standing apptmt weekly), light exercises, yoga...  and then see how it is!  For two-three years, he's been going two steps forward, two steps back! He's getting so frustrated and I'm worried he's going to do permanent damage to his shoulder. 

Put into perspective, this stuff isn't the worst that can happen but has just been months of frustration for him and constant niggling worries for me. :ywow:


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## xmdmom

Doctors seem to really vary in terms of how often they check labs so hopefully it won't be a problem that he's "late" for his labs.  [I don't think my son (on Remicade) has had any labs since June.  He will get some in a couple of weeks.  I think his doctor's routine is if you're doing well, an every 6 month visit with labs. ]

Hope the shoulder feels better soon and that his labs are all normal.


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## Maya142

Sending hugs Tess! How very frustrating and what a confusing system! 

I fully agree with your plan, I think very often kids go back to sports/weight lifting much too early. We were told it takes a long time for injuries to fully heal and even once they are healed, muscles are weak and those must be strengthened before getting back on the field (my girls played soccer  ). Really hope he'll do the PT and try to strengthen his muscles.

If it makes you feel better, many (most?) kids with JSpA don't have elevated ESR/CRP so even if he'd had the labs done, they wouldn't necessarily have shown anything of value if he does have arthritis. 

I know that's not much of a consolation but don't beat yourself up! Things happen.


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## kimmidwife

Sorry to hear Tess! Sending you hugs


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## pdx

How frustrating! It's strange that they would expect you to even be involved with the requisition.


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## Tesscorm

Thanks all.  I think I just needed to release some of the frustration!  A lot of you know, better than I, how time consuming it is to organize apptmts!  Since May, S has been dealing with one issue or another...  there have been a number of GP apptmts and tests, cardio apptmts and tests, couple ER visits, follow up apptmts, rheuma apptmt...  it's always a challenge arranging apptmts so as to minimize trips to/from school, fit them into his school schedule with the least disruption and trying to do this thru texts and missed calls!...  And then there's keeping S positive about it all as he's just getting tired, frustrated and down about it all.  I think I actually do a pretty good job of somehow making it all fit!  But, it was just frustrating to find out that routine labwork still need overseeing - I'd thought that, after two years, this was a done deal!  :lol:

Now that I know how it works, the control freak in me is admittedly a bit happy :shifty-t: to have the requisition in my control! :lol:  Now there will be no question as to when labs are done!  And, at S's next GI apptmt, I'll reconfirm frequency.  If his GI is happy with every other infusion, I'm fine with that.


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## kimmidwife

Tess,
Does Stephen have pain when he takes a breathe in and out? 
Caitlyn is having severe pain in her back and chest and feels like she can't breathe. Her chest x ray was normal and we are not sure what is going on. They got us in for an urgent apt with a rheumatologist tomorrow.


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## Maya142

Kimmidwife - when my older daughter last had costochondritis, she described it like that. The area around her thoracic spine hurt, her ribs hurt and her sternum hurt. I hope the rheumatologist is able to figure out what it is.

Tess - did you ever get an answer on when to do the bone scan?


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## Tesscorm

Kim - at times, S had pain when he took a deep breathe but not with regular breathing.  It also hurt when he coughed.  It was the tightness when he took a deep breathe that prompted S to go to ER.  I don't remember him mentioned back pain specifically (maybe a bit?? but if it was there for any extended time, it was mild compared to chest/ribs/shoulder).  His pain was primarily along the sternum and travelled to the right, towards his back, along his rib cage.  I don't think he was ever able to isolate one particular spot as he said it didn't hurt when touching it.  (Although, he did say physiotherapist was able to find a particular area that hurt.)

Maya - I'm waiting to hear back from rheuma office.  They see the order for the scan going out but don't see a reply.  They will get back to me this week (tomorrow?).  They also said it shouldn't matter if the pain is gone right now - scan should still be effective.


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## kimmidwife

Tess,
That is exactly where her pain is, the same exact spot sternum, going to the right into her shoulder and scapula. It feels very tight when she takes a breathe and the area hurts during breathing and makes her feel short of breathe.
I took her to the regular doctor. They wanted us to go to the ER but all her vitals were normal and I really felt like it was not necessary. They helped us get an urgent appt for tomorrow at the rheumo. I will keep you posted.


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## DanceMom

kimmidwife said:


> Tess,
> That is exactly where her pain is, the same exact spot sternum, going to the right into her shoulder and scapula. It feels very tight when she takes a breathe and the area hurts during breathing and makes her feel short of breathe.
> I took her to the regular doctor. They wanted us to go to the ER but all her vitals were normal and I really felt like it was not necessary. They helped us get an urgent appt for tomorrow at the rheumo. I will keep you posted.


A had something very similar over the summer. It started after an asthma flare so I assumed it was related to the lungs. Breathing treatments weren't touching it and she was taking these weird gulp/gasps every few seconds. Said she felt like she just couldn't breathe. Her chest burned, felt heavy, and hurt when touched as well. I took her to the ER and they diagnosed costochondritis. Gave her a shot for pain (which didn't help) and told her to take Motrin consistently to decrease inflammation. 3 days into the Motrin and she had bloody stools so we stopped. GI diagnosed as costochondritis a few weeks later and prescribed Neurontin (which I didn't fill) and PT (which has never worked for her in the past). Immunologist ordered an echo (normal) and then prescribed Omeprazole which worked like magic.  

I think costochondritis is often quickly and incorrectly diagnosed. When A did have costochondritis she could pinpoint an actual spot that hurt (lower right ribs) and deep breaths were excruciating. I hope you figure out what's causing the pain for your girl rather quickly.


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## my little penguin

The dx is common because it is a common cause for chest pain .
The treatment of Motrin plus pt also works in the majority of kids who do not have Gi issues
So the doctors have to go with the common dx for the presenting symptoms
So keep in mind Having a kiddo who doesn't follow common rules ( have one of those ) makes things trickier to get a dx since what is typical may or may not apply - reflux is another common cause of chest pain but not the way it was described .

We run into problems when they treat for common but you have to start somewhere 
Weird and rare is just that rare and not the first choice for dx regardless 
Common needs ruled out first


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## DanceMom

my little penguin said:


> The dx is common because it is a common cause for chest pain .
> The treatment of Motrin plus pt also works in the majority of kids who do not have Gi issues
> So the doctors have to go with the common dx for the presenting symptoms
> So keep in mind Having a kiddo who doesn't follow common rules ( have one of those ) makes things trickier to get a dx since what is typical may or may not apply - reflux is another common cause of chest pain but not the way it was described .
> 
> We run into problems when they treat for common but you have to start somewhere
> Weird and rare is just that rare and not the first choice for dx regardless
> Common needs ruled out first


What I'm getting at is that sometimes doctors are quick to throw out a diagnosis just because it is common. I argued with both the ER doc and our GI that she didn't have costochondritis, and guess what? I was right. Both physicians were adamant that she had costochondritis because she complained of pain with palpation. Both physicians were wrong. Doctors DO NOT have to go with the common diagnosis and treatment, particularly when a child is known to be "a zebra". I'm thankful that our Immunologist ordered an echo to check for immediate danger and then thought out of the box with reflux.


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## kimmidwife

Dancemom,
I thought about reflux and gave her nexium for the past few days and it has not helped at all.
Unfortunately MLP is exactly right about the ER. Doctors do look for common things first and that is what is taught in medical school, look for the normal don't look for the zebra unless all the normal things have been ruled out.
ER docs are also taught to try to fix the problem quickly and get the patient out or admit for more extensive work up. Having worked in health care for over 20 years I know how it goes. I do agree though when you have a presenting child who has a known unusual illness already then you need to think outside the box, sadly though it doesn't work that way except on the rare occasion when you get an outside the box thinking doctor in the ER.


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## DanceMom

kimmidwife said:


> Dancemom,
> I thought about reflux and gave her nexium for the past few days and it has not helped at all.
> Unfortunately MLP is exactly right about the ER. Doctors do look for common things first and that is what is taught in medical school, look for the normal don't look for the zebra unless all the normal things have been ruled out.
> ER docs are also taught to try to fix the problem quickly and get the patient out or admit for more extensive work up. Having worked in health care for over 20 years I know how it goes. I do agree though when you have a presenting child who has a known unusual illness already then you need to think outside the box, sadly though it doesn't work that way except on the rare occasion when you get an outside the box thinking doctor in the ER.


It took about 2 weeks on Omeprazole before we noticed a difference with A. Have you given the Nexium enough time to work?

And I know what doctors are taught...."When you hear hoof beats....yadi yadi yadi..."  But when you're treating a KNOWN ZEBRA....don't expect her to suddenly turn into a horse. We usually get fabulous ER docs that look at A as a whole person. This one threw a diagnosis at her, gave her some medicine that didn't make an impact on how she felt, and called it a day. I left in tears. That's why I said I hope you figure out your girl's problems quickly. It took us weeks.


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## my little penguin

Suggest what we do if your kiddo doesn't fit the mold
Talk to the specialist first then only go to the ER where they have prviledges
Let them know ahead of time that your coming
And keep the main specialist at the top of the call list ( in her case immuno)

In education I assume it no different you assume the kid has normal learning issues first 
Then move on from there and test accordingly 
You don't do the rare expensive tests on every kid


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## DanceMom

my little penguin said:


> Suggest what we do if your kiddo doesn't fit the mold
> Talk to the specialist first then only go to the ER where they have prviledges
> Let them know ahead of time that your coming
> And keep the main specialist at the top of the call list ( in her case immuno)
> 
> In education I assume it no different you assume the kid has normal learning issues first
> Then move on from there and test accordingly
> You don't do the rare expensive tests on every kid


We initially thought it was a lung issue so we went to the hospital where her Pulmo is. She is the one that advised us to go. I never just take her to the ER without calling in advance.

In education if the kid has a known learning disability (like A has a known immune deficiency) I ALWAYS think out of the box.


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## Tesscorm

Result from bone scan is that all is fine....  we are to call back if pain returns (intensifies).

Of course, immediately following rheama apptmt, his chest/ribs began to feel better anyway.  I swear, this always happens so I appear neurotic here and to GI!  :ybatty:  But, in any case, scan is clear and he is feeling better.  I just reminded him this week to continue with physio if he's feeling even just a twinge of pain (he didn't reply!  :lol:  The joys of having kids away at school!)

I'm still convinced his shoulder is a separate issue - for that, we'll either wait until the October :ywow: apptmt or, I've asked S to ask his p/t for a recommendation of another local ortho (in S's hands...).

For now, I'll just see how it goes...


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## Sascot

No answers but glad the pain has settled a but just now.


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## Clash

So glad to hear the bone scans are clear. I hope he continues to improve!


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## CarolinAlaska

That's crazy.  You must be getting frustrated...  I would be.


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## Maya142

Glad he's feeling better and that the scan was clear! Of course, pain ALWAYS gets better the moment you see a doctor .

Hope you can get in with an ortho sooner than October. Can't believe the wait is so long!!


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## Tesscorm

It is driving me nuts!  Sure, S is fine now, happy, getting on with his life but, when it comes back, it'll be all 'why am I suffering with this?', 'I'm 21 and my body is breaking down', 'my friends can't understand why I'm never well', 'do you know how depressing it is watching roommates leave to go play hockey and I can't go?'...  ugh, I get it!  (Especially now as I fell, badly bruised my ribs and now know how he feels!)

But, I'm thinking if the chest/ribs pain does come back, it's going to be tough to get a definite dx.  I kinda thought this is what would happen...  certainly glad his heart  was cleared and scans came back good but I think a musculoskeletal issue will be harder to pinpoint.  So, these were the 'easy' steps! :yfaint:  Other constant hurdles are him and the distance.  When he was younger, I could control - 'yes, you do STILL need to see physio!' and distance not an issue.  As I said, I'd bet LOTS that he hasn't gone to physio since he's gone back to school ('it feels fine', 'just can't right now with all my classes', etc.) so I just can't control what I think should be the ongoing treatment. 

And, all this applies to his shoulder too!

As for ortho, I think part of the problem is that I picked an ortho that seemed to have an amazing clinic (physio, chiro, sports med, ortho specializing in shoulders, etc.) but, being an amazing clinic clearly equals lots of patients.   Other than pulling a name out of the yellow pages (yes, old timers' equivalent to google! :lol, all we can do is ask his p/t for a recommendation of another good ortho...  again, in S's hands - up to him to go to p/t and then remember to ask. :ybatty:  Being someone who wants control over this stuff, can be frustrating when it needs to be left in the hands of a 21 year old!  :ywow:  Even at 21, it's not easy to just let them take it all on by themselves  and I feel bad for him; I know he's responsible re his shakes and supplements and he has gone to physio, yoga, etc. and I wish he didn't have to deal with more apptmts, etc.

My head's going back in the sand - it was musculoskeletal, took a long time to heal and now it's really better.  

(MLP - don't worry, you still have a few years to go before DS grows up!   )


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## Maya142

Honestly, Tess, for AS and JSpA (I guess S would not be considered JSpA anymore - he's grown up now !) a bone scan isn't the most accurate test. So it is possible that they missed something (though chest pain without lower back or neck pain in AS would be very rare, I think). 

I think you'll have to wait and see but he should DEFINITELY do PT. If it's an injury, PT will help with strengthening the muscles so it doesn't happen again.

My older daughter is the same as S - it's so hard when you have young adults. She complains but isn't willing to do anything about it. 

And when she feels fine, she conveniently stops PT. It's very frustrating! She's finally figuring out that she actually needs PT to feel good and keep her back flexible but it's been quite a process. And she only has to go twice a month - I have trouble understanding why this is so hard for her :lol:. She is 22 and we're finally making so progress, so hang in there! 

Can you call his physical therapist and ask for a recommendation? You could call the place he's going to and then just ask for the PT S is seeing. Keep the appt. at the amazing ortho place, but try to get one sooner somewhere else.

Hang in there! Eventually he'll figure out what he needs to do to feel better. It's just hard watching them struggle until they figure it out :ghug:.


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## Tesscorm

I guess we were just as stubborn way back when...  

I have thought about just calling the p/t myself but, at 21, it sort of seems wrong that his 'mom' is calling with such a simple question!  :lol:  I think this job I need to leave in his hands!  I've booked the Oct apptmt, so my 'back-up' plan is in place ...  It would be better if he was able to see an ortho sooner but, like you said, he has to figure it out (as much as it pains me along the way! :lol.


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## Maya142

:lol: I tell my daughter - either you call by x date, or you deal with me calling. Most of the time, she calls quickly :lol:. 

I'm sure we were angels when we were their age !


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## crohnsinct

Haha Maya!  And we have girls so we could just say "I need to make an appointment" and no one has to know mommy did the calling.


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## Optimistic

Totally feel the pain of having an older child not exactly execute treatment plans or follow up like they should...,mine is only in high school and tonight again we discussed need for him to be mature and take some responsibility for his health. I guess when we were young we thought we were bullet proof too but this is crazy!!!

Funny what a difference in compliance you see between maybe age 13-15 and up. What will college and young adulthood bring????


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## Tesscorm

So, back to square 1...  S dislocated shoulder Saturday, back to ER, had to be put under to pop shoulder back in.  

But, am looking at silverlining...  hospital said they are referring him orthopedist.  This will be close to his school (which is what I wanted) so, hopefully, we can move on this a bit more urgently now.  

But, poor guy is in a lot of pain and not much he can do for it.  Icing it, wearing a sling and taking tylenol.  I don't know what else to suggest to him for now...   Would feel better if he was at home.


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## Jmrogers4

Ouch!  Hope he feels better soon and ortho can give some clear answers.


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## Tesscorm

Ortho appt is on Wednesday!  So glad it's so soon!


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## Sascot

Such a painful thing! Hope they are helpful at the appt


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## kimmidwife

Tess,
That is awful to hear! I hope the ortho can figure out a way to help quickly! Can they prescribe something a little stronger then Tylenol for him? In the USA they probably would.


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## Tesscorm

Kim - not sure about pain meds.  I wasn't with S when he went to hospital and I know, in the past, when he's been on his own, he's just told staff no pain meds at all because he didn't want to take something he shouldn't.  They may have offered and he declined them??  At this point, it's not worth trying to get anything else...  his GP is near home, S is two hours away and a local walk-in probably wouldn't easily prescribe something stronger.  As his ortho apptmt is after tomorrow, I don't think there's much point is doing anything else until then.


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## Clash

Glad the ortho is so soon! Is it that once you dislocate something it is more apt to happen? Because teen/young adults seem to be wrecking balls as far as strenuous activity, rough housing, sports, crazy just for the hell of it stunts so how do you keep it from becoming an ongoing issue?

Hope the pain passes soon.


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## pdx

Oh no!  Hope that he starts feeling better soon, and that the appt Weds. is helpful.


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## Tesscorm

Clash - yes, once it happens, often it becomes a recurring problem.  Especially, if you keep injuring it.  It goes round and round, it's now vulnerable so you hurt it easily, now you've hurt it again, becomes more vulnerable, etc., etc.  Once you pop the shoulder out, the ligaments/tendons that hold it in place, are stretched and sometimes don't give the same stability as they once did.  I imagine, each time this happens, the stability weakens.

Likely there's much more to it, ie how long it's 'out', degree of dislocation?, location/position of dislocation??  This is, at least, the second time it's completely popped out requiring ER to sedate him so it can be put back in place.  But, he's felt it pop out and back in a few times on it's own.

He's barely played hockey this year because even a hard slapshot or an awkward fall causes it to pop out and in; a few weeks ago, as he passed a friend, the friend pulled his arm to call him back - not hard, just a normal tug but pulled from behind...  it was enough to be one of the out-in pops.

I know surgery is an option but, from what I've read, surgery isn't the 'fix-all' - it may prevent further dislocations but I don't think you're left 'good as new' as far as flexibility, etc., kwim?

Hopefully, we'll get some guidance from ortho on wednesday.


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## Maya142

Poor S! I'm surprised they didn't give him something like Tramadol. I know NSAIDs are out, but I'd expect them to at least give him something for pain!

Glad he sees the orthopedist soon. Hope you guys get some answers!


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## kimmidwife

Tess,My friends son had this problem with his shoulder too. He had the surgery and has done great since then. No more issues at all.


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## Optimistic

Sorry about his injury. Hope a plan comes together at ortho. And he is very mature to think about what meds he should and should not take!

Be nice to him. I dislocated my shoulder twice. I thought the pain was worse than childbirth (which was horrid!)


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## Tesscorm

Kim - really good to hear!  And your friend's son has had no loss of flexibility or range of motion?

Thanks Optimistic   I'll definitely take care of him.  Took advantage of the trip to see him to go pick up groceries for him last night...  unfortunately, no time to make him some home food though.

I found some info on his ortho and I'm hopeful it'll be a great fit!!  He's young, sports minded (played on university teams and competed on one of Canada's national sports teams), won an award for his interpersonal skills with patients and families... so, I'm hoping he'll understand that Stephen's hope is not to just have a stable shoulder but, ultimately, to reach a point where he can play hockey again.  I'm so happy we're finally moving beyond x-rays that show no problems.


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## awmom

Oh no, it sounds so painful!  I'm glad his appointment is soon, and he is so brave to handle it without pain meds, some of which really mess with intestinal motility!!  I hope he is offered good options so that he can continue to play hockey without having to worry too much!!!


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## Optimistic

Funny how you described the ortho. 

I do some work in pharma  and I've heard  ortho surgeons described as ex-jocks who don't realize they aren't in that stage of life anymore! They often relate to a patient wanting to return to the sport and ASAP. The joke is they release their patients much earlier than any other surgeon. Push him To look at all Options to get him back on ice asap. 

I saw that personally recently when my son had knee surgery. He was very concerned about getting back to sport for a tournament.  Instead of dr telling him that may not be possible, he looked at calendar and backed into a surgery date that would most likely enable him to play. This was the same man we waited forever to see and whose asst said he schedules surgery 8-10 weeks out. I guess he finds space for surgery when there  is a game you need to make!

Now if the gi would only work this way in scheduling scopes and mre. Those take forever and other life events that may conflict aren't factored in!


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## kimmidwife

Tess,
My friends son did really well. To well almost, six months after his shoulder surgery he had a mountain climbing accident and is still recovering from that a year and half later. (Had nothing to do with the shoulder).


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## Tesscorm

Funny!!  Over the years, i was quite surprised at the exceptions made when it came to hockey (I'm sure all sports!), even from school!  When S hurt his knee years, years ago, playing soccer (his 'off season' activity), my husband (ok, me too) moved heaven and earth to get him ready for hockey season!  We even went to the states for a quick MRI so he could start treatment sooner!  And, this was grade 8 hockey!!  No NHL scouts on the horizon!  :lol:  But, in Canada, hockey seems to take priority over anything!  :ybatty:

Was just about to post about today's apptmt...

So, it was 'okay'.  Ortho recommends surgery, seemed to be his one and only recommendation actually.  He said his shoulder will never heal without it and, the way he described it, makes sense that no amount of physio will help.  

If anyone has any experience with this, I'd love your opinion too.  My terminology/description will probably be a bit wrong but here goes...  He explained that the ball (top of arm) fits into the shoulder socket and, between the two, there is some cartilage attached to the socket (imagine the cartilage glued to the socket).  When he dislocated his shoulder, the cartilage 'glue' tore away from the socket and is now loose.  The surgery will reattach the cartilage to the socket at three points (sutures or clips).  It will be an arthroscopic surgery - three small incisions.

Given the way he described it, I can see how no amount of p/t will reattach the cartilage.   And, because the cartilage is loose, this is why S often feels it pop a bit out and back in (and, why he typically feels like it's always a bit loose).

He said there's no medical urgency in getting it done immediately, other than further dislocations/injuries will make it looser (up to S to be a bit more careful and no hockey, weights, etc.).

We need to get an MRI, which will take a couple of months anyway because it needs to be done with dye, so can only be done with certain technicians, small hospital, etc.  

As far as remi, he did want GIs confirmation but said risk of infection is low with arthroscopic surgery.  Other risks are low - nerve damage (but he said very rarely), loss of range of motion will barely be noticeable (said it wouldn't affect sports, etc.), does not guarantee no future dislocations (but usually only with sports like rugby, football, etc.). Recovery is a bit of a bummer - six weeks in a sling and then another six weeks recovery.  

S can't do his summer job with a sling so we're thinking the best timing will be beginning of August.  Will only lose one month of his summer job and, will only have sling for a week or two of school (more easily managed than his job).  S's greatest frustration is that he'll have to wait so long before he can get back to sports, working out, etc.  Annoying but not intolerable.

So, questions that I thought of AFTER we left!  

Dr was soooo enthusiastic about the surgery it made me nervous!   But, I have to admit, I felt the same way when S's ped GI pushed EEN over steroids - I knew nothing about either and sometimes felt I'd been railroaded into that decision BUT, I know now, having the opportunity to do either, it was the better first choice to try. So, Dr's enthusiasm isn't necessarily bad.  

If another dislocation happens post surgery, what does this mean to the cartilage?  Right now, it is loose but in one piece.  If he dislocates it later, will it tear apart at the three points where it's secured by the surgery?  Will this be even harder to repair?  (Knowing S... gotta ask the question! :lol 

Should I get a second opinion?  Husband doesn't really think we need a second opinion, I know he's thinking I can't second guess every doctor!  But...???  (And, we do have time if we're waiting until August anyway...)

As far as remi, S's next GI follow-up is beginning of March, so I will ask his opinion then.

Oh, and one more tidbit of info that I found interesting...  S has almost no pain in his shoulder today and almost his usual range of motion (altho it's usually a bit limited because of recurring problems), Dr. said this is actually 'bad' news.  It means that the area is already stretched and why, even though he had a complete dislocation three days ago, the new damage wasn't 'severe' because it's already damaged. 

But, S's chest/rib pain is back!  Started this morning (has to be connected, right??).  Said it's much, much worse than his shoulder. :ywow:  Told student ortho and real ortho, explained about cardiac tests, rheumy, possible connection to shoulder...  both their answers, 'hmmm sounds to be a medical mystery'. That was it!  :ymad:  Student even said 'yeah, you don't want to be a medical mystery.' :yfaint:


----------



## Maya142

Tess, did he say S has a labral tear?

http://orthoinfo.aaos.org/topic.cfm?topic=a00426

My daughter has a labral tear is her hip, and I know they occur in the shoulder joint too. They first recommended arthroscopic surgery for her. We went to see a different surgeon and he said he did not recommend it. In M's case, it was because we had no idea if her hip pain was coming from the tear or from the AS, and so fixing the tear may not fix the pain.

They said the same thing to us - no amount of PT would make the tear heal. Recovery was about the same and they said she'd be on crutches. Because M has so many other issues and her AS is not under control, we decided it wasn't worth it.

They did say if she had the surgery, she would NOT have to stop Remicade, even though she was on high-dose Remicade at the time. They said she might have to delay the infusion by a week (she was doing it every 4 weeks at the time) and that we'd do it in the middle of an infusion cycle, but that was it.

We were very glad we got a second opinion, because I'm not sure the surgery would have helped her and it would have just put her through a lot. That said, M is not a serious athlete and is also not in remission, so our concerns were different.

Good luck!!


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## Tesscorm

Thanks Kim...  Mountain climbing!  OMG!  Like Clash said... wrecking balls! :yfaint:


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## Tesscorm

Maya, yes, I'm almost certain he said it was a labral tear...


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## Maya142

They're pretty common injuries, especially in athletes. In M's case, hers was degenerative, caused by the AS. Honestly, we were told the surgery works well and if M didn't have so many issues with her arthritis, we probably would have gone for it. They told us one night in the hospital probably, but that may just be for pediatric patients.

Wish they could figure out what is causing his chest/rib pain...could it be referred pain?


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## Tesscorm

We didn't ask re 'referred pain' specifically but S asked if it could be that he has been compensating for his left shoulder for so long, that it has affected the muscles on his right side.  Ortho said usually pain due to compensation would be on the same side.  I also mentioned that years ago, S also separated his right shoulder (there were never any other problems with it), so could that be related?  He just kind of shrugged and said 'who knows?'...  Someone once told me it could be a dislocated rib (subluxation), I asked about this too, doctor said it would have shown up on his cardiac MRI or bonescan.  When I mentioned they weren't looking for a rib issue on those tests, he said the radiologist would have seen it anyway.  IDK, not sure that is a certainty, especially if the radiologist is busy and looking for something else and I was also told sometimes rub dislocation doesn't always show up??  S's attitude is that no one will ever figure out what's causing the chest pain so, as long as he knows it's not his heart, he'll just live with it.   I'm not sure where else to go with this...  hopefully, it is related to his shoulder and will go away after it's treated.


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## kimmidwife

Tess,
The radiolgist would have seen a rib issue. They review everything when they look not just the one thing that was written on the scrip that is how it works. Any unusual findings are noted. I think the chest pain is probably like Caitlyn's rheumo said, an arthritis related to crohn's disease. Unfortunately he said other then getting the crohn's under control there is not much you can do for this. However that being said can you ask the GI for some labs to check inflammation? CRP, SED rate, and a Fecal Calp. I would want to make sure the remade is working.


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## crohnsinct

I think you are right about the surgery and the rib pain.  The water is too muddy right now.  Once you fix the shoulder, then you can assess the rib pain.  If it doesn't go away, research it further.  Just stinks that you have to wait such a long time to resolve the rib pain.  

We actually have the reverse with O.  Various hip pain.  Ortho and PT have been treating it and resolved most of it but there is one pain that just won't go away.  The new thinking is that was the original pain (labral tear or sports hernia) and the other pain that has been treated was due to overcompensation.  So for us we found the original pain because of treating the overcompensation pain.  Just starting to define what the original pain is.


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## my little penguin

Second the radiologist would have noted it.
They noted a lot of things on DS mre cte and X-rays that were not even the organs being looked at .-which lead to referrals to their specialists to figure out if any of them were a concern 


Hope the surgery goes well
Do you have time for a second opinion?
If so would get one
DH was told he needed surgery quickly on his neck
That was 9 years ago 
Got a second opinion no surgery needed 
Something rise was at the root of the problem


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## Tesscorm

Thanks MLP and Kim re the mri readings.  I know other indications are often found in MRI images but I always thought that was a matter of luck, didn't realize it was normal course for radiologists to look for indications unrelated to reason of test.    One more example why it's so helpful to run this stuff by everyone!!  Even when not crohns related!!  So...  hmmm, can we not have all our kids do a full body MRI and be done with all questions!  :lol:

My thinking on the second opinion is that I would contact the October ortho and request an apptmt based on the current situation - I'm hoping this recent dislocation and the surgergy dx would bump S up in dates??


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## kimmidwife

Tess,
If you liked him I don't see why not. I think it is a good idea.


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## crohnsinct

I would think that would definitely move him up the list and if not we'll then you have your answer anout that doc


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## Sascot

Totally sympathise with the medical mystery bit, my daughter is not impressed being told to live with pain either. I hope the surgery does the trick for his shoulder. Wish they could figure out the rib pain!


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## Tesscorm

So, we had Stephen's follow-up today - we talked about lots of things, only a little bit about crohns! :ywow:

Crohns:
All seems good.  As it's been 2+ years since his last MRE (scopes last year), GI ordered an MRI.  Also ordered levels test at next infusion.  Did mention that it seems S has had a number of infections/abx this year...  maybe that's why he ordered levels test??

I asked about TB test (we talked about this recently here) - he doesn't believe it's a necessary on a regular basis - unless we have specific reason for concern.

Shoulder:
Asked where S was having surgery and, when I told him it was in a small town/city, he asked if I knew the surgeon's experience, etc.  As I don't, he suggested a second opinion before proceeding with surgery.  Said shoulder surgery can be tricky and best bet is with someone who has lots of experience - as I don't know the current orthopedist's experience, he offered to try to get a recommendation for S in Toronto.  

Lungs - this is where my worry sits now.  S has had a cough/wheezing for a while...  started with a cold, didn't quite go away, etc., etc.  He went to a walk-in clinic about 3 weeks ago, was told he had bronchitis and given zithromax and a puffer.  It helped a bit but, once abx finished, cough worsened again.  S went back to clinic and they gave his another prescription for amoxcillin-Clav (sp??) and send him for chest x-ray.  X-ray showed an area of opacity but radiologist couldn't say for certain whether it was a true abnormality or a problem with the picture.  GI asked him a number of questions about his breathing, about his on/off again chest pain (wondering if it was related to shoulder) and sent him for another chest xray following the apptmt.  He wants to compare it to the chest x-ray he had in August for the chest pain and, if we can get the film, wants to have his own radiologist look at the x-ray taken last week.

Needless to say, I want to know what this is asap.     He said he would have the results from today's x-ray by tomorrow, so I could call in for the results.  

But, from S's description, he said he's seen quite a bit of improvement since starting this second round of abx (finishing in two days) and he just played hockey yesterday (yes, his shoulder popped out - and in again  ) and didn't have any breathing problems.

But, poor S is just so fed up with all this!  As you all know, it's been one thing after another for the past year...  on top of a very tough school semester, he's just becoming a bit overwhelmed and tired of it all.  I tried to remind him, good or bad, school will be done in two months and he'll have a break from it for a few months!  I wish he didn't have such a tough semester while dealing with the shoulder and chest pain and now a new worry.  Seems like we put one to bed and another pops up! :yfaint:


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## Maya142

Really sorry to hear that S is dealing with so many things . It just sucks! 

I definitely agree on the second opinion for the shoulder surgery. I don't mean to scare you, but even routine procedures can be messed up so it's important to find the best surgeon you can - my husband had a hip replacement for his AS that had to be redone. It was a long time ago and his subsequent hip replacements (4 more since then) have gone well but I definitely wish we had gone to a different surgeon for the first one - it would have saved him a lot of pain.

Fwiw - M had a cold that turned into a bad sinus infection this winter - it required two rounds of antibiotics (second round was Amoxicillin). Thankfully, after the Amoxicillin, she got better but it took her a surprisingly long time to recover completely.

Really hope the chest x-ray is nothing - sending HUGS :ghug:!


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## vtfamily

So, so sorry to hear S is having such a hard time.  I know it is difficult on you too.  It would be nice if answers could come easily and if you could have a break from the treadmill.

Hugs to you, strong mama!


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## pdx

What a year--no wonder your son is fed up with it all.  Really hope he gets some relief from all of this soon.


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## kimmidwife

So with you on the rough year!
Hopefully the cough is nothing and the X-ray. Is okay. Will be waiting to hear your update. Fingers crossed.


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## Sascot

Sorry to hear he is struggling with everything. Glad the cough seems a bit better but hope the results of x-rats come back quickly. That was good of the consultant to offer to help get a second opinion on the shoulder, one less thing to think about.


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## Optimistic

I really hate that he (and you) keep getting hit with one problem after another. This does have to end eventually but that doesn't make dealing with it now any easier. It sounds like you are getting some good medical care and I hope that leads to some answers and treatments soon. 

I worry about him going through so much. Even the strongest person would feel defeated after all of that. I think I missed some signs with my son that his crohns and other health and life issues were taking a toll. Does he have things he enjoys and that build confidence that give him small but regular escapes and "light" in all of this? He needs some wins. 

I'm waiting to hear about the progress.


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## Tesscorm

We finally got back S's x-ray results yesterday - all clear!!! :dusty: :dusty:  

Has been been a grueling couple of weeks!  As you can imagine, was so worried about S but, at the same time, my father has been in/out of hospital for 4-5 weeks and things have just worsened week by week.  We've been faced with some very difficult decisions regarding his life and ongoing QOL and he'll be having surgery this weekend.  And, with my worry re S on top of it, has just been a horrible time.

I'm am soooooooooo relieved re S.  What a huge weight gone!  And, as tough as it'll be, feel a bit stronger to deal with my father's problems.  

So, it's not that I've been ignoring everyone here. once I posted about S ..  just truly have only had a few minutes, here and there, to come on here.


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## Sascot

What a relief! One less worry. Sorry to hear about your father, hope the the surgery goes okay


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## pdx

Glad to hear about the results, but so sorry to hear about your father.  Hope everything goes well for him this weekend.


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## kimmidwife

Very glad to hear the news about S. Praying for your Dad and your family!


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## Jmrogers4

Glad x rays were clear for S.  Sorry to hear about your father, keeping you in my thoughts.


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## Tesscorm

So, S had his delayed infusion and all went well.  Whew...! 

Always lots of fun and excitement as your kids take on more of their responsibility... :yfaint:

As you all know, I was worried about the delay (antibodies, reaction, etc.).  S and I had talked *many *times about this, the new date, concerns, reactions to watch for, etc., including at 10am, 2.5 hours before his infusion!...   At 3pm, I text him to ask if all had gone well, how was he feeling... he immediately calls 'mom, I forgot to go!!'  :ywow: :yfaint:  I thought he was teasing me but, nope, just straight out, simply _forgot_!  Started studying and just forgot to go.  (Any newbies wondering if you will ever be able to 'forget' about crohns, clearly, once in remission, you do! :lol:  Although this doesn't apply to moms!)  As you can imagine, I flipped!  Worse, it was late Friday afternoon!  Told him he was on his own, here's the name/number, figure it out! :ymad:   He managed to find another clinic that had an opening on the Monday (coordinator had offered him a closer Tuesday apptmt, he told her he wouldn't be alive by then as his mom would kill him if he didn't find a spot Monday! :lol  The only saving grace was that I'd forgotten that his last infusion had been delayed 3 days, so this further delay still only put him 6 days late.

But, because Saturdays (his usual day) are hard to book, I had already scheduled all the way through December...  which now had to be rescheduled!  Which he did...  Then, when I asked him to send me the dates and times, he'd forgotten to ask the times, only had the dates! :yfaint:  ... :rof:  So, which came first?  The kid or the helicopter mom?!?!?)

He really is a great kid just... forgetful!  :whistleinnocently:

And, all's well in the end.  He had his shoulder MRI on Thursday, arranged to get the film for the ortho the very next day! (he was on his best behaviour! :lol, and has left on holidays with friends for two weeks!  (Now I'll only just stress about him being away... )

Ortho apptmt two days after he returns so, hopefully, we'll finally make some plans re his shoulder and maybe even get some sort of answer re his chest pains! :thumright:


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## pdx

Ack!  My heart is racing just listening to your story!  I am impressed that you turned over the responsibility for rescheduling to him, and that he followed through so admirably.


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## awmom

That is so funny!!! We fret, and worry and they forget just like that!!!! N did that a few months ago.  Just forgot!  Luckily the gals at the infusion center got in touch with him and rescheduled his appointment!!!  Now I'm back to reminding him.....at least for a little while!
Glad that S is out with friends, enjoying life.  Hope the orth stuff goes well and you get some answers!


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## Tesscorm

:lol:  OMG, I had so much going on...  still trying to settle my parents (hire caregivers, reno home for wheelchair, etc.), make sure all was arranged for S's trip (he's staying at a place that my cousin arranged for him, as she only speaks a bit of English, all arrangements had to be thru me), trying to get paperwork set up so I could get his MRI film while he was away, etc., I just reached my limit of what I could take on!  utahere:

We all forget things but, as adults, when it happens, we're stuck fixing it, right?   (although, :blush: I did give him the new Saturday dates he should try to book! :lol


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## Tesscorm

awmom - 





> We fret, and worry and they forget just like that!!!!


  You're exactly right!  And I think that's exactly what annoyed me so much!  :lol:


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## Maya142

Tess, I'm sure you were SO SO frustrated, but I had to laugh. That is SO typical of young adults.

We are lucky that my older daughter's joints "remind" her within 12 hours if she forgets Humira. I cannot imagine what we'd do if she was completely asymptomatic!!

It's so funny that we always talk about Remicade being the "easier" med due to compliance but never once considered that a forgetful teenager/young adult could easily just not go to the infusion :lol:!!

Glad Stephen got it straightened out . I hope this experience was enough of a hassle that he'll make sure not to do it again...of course, with young adults you just never know!


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## happy

Wow! 
So great that he stepped up to make it right.
So great that you were able to "let" him make it right.
I so know the state of "reached my limit of what I could take on".
So great that you knew yours.
So glad nothing awful happened.
I am so waiting for the story of when he gets home and says,"I don't know what you worry about so much--re-booking was a breeze!" He may need to find alternative accommodation then!! :ywow:


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## Tesscorm

Yep, hoping that 'fixing' it was enough of a hassle this time that he'll understand why it's just worth being on top of things in the first place!  :lol:   But, it seems the coordinators felt sorry that his mom was 'going to kill him' so they made things easier for him than they would have for me!  :lol:  Oh well, whatever works!!  :lol:

But, yeah, tough to sometimes let them suffer the consequences for their actions when the consequences can be quite severe in these situations!  Easy enough to deal with a temporary hassle if you're late with your meds, worse if you cause an ongoing flare or lose the ability to use them completely them because you develop antibodies!  Ugh, hard to let go and allow them make that big a mistake.

:arghmatey_ani: They've got us backed into a corner! :lol:


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## Sascot

I totally agree this letting go nonsense isn't good for moms!! I can just imagine him on the phone saying my mom will kill me if I don't get a quick appt, that made me laugh. They took my son in for his last appt on his own first, I'm still trying to recover. Dreading the move to adults later in the year! Glad it all worked out in the end.


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## kimmidwife

Tess,
Sending you a big hug as I am sure you need one after all that! Glad he was able to take care of it on his own. It is so scary letting them grow up.


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## Tesscorm

Sascot - the move to the adult GI wasn't difficult.  I still go in to every apptmt  and ask my questions (at the end).

The only real dfiferences in the apptms with adult vs ped GI...  

- the first few visits, I always asked if S or GI wanted to discuss anything in private.  I've stopped asking because S always said no...  but, I did tell S it was totally fine if he ever wanted to have a private discussion with GI, he's an adult and I'd totally understand if he'd like some privacy to ask questions.
- at our first or second apptmt, I said I was going to leave the room and would they have a quick discussion re alcohol, drugs, etc.  I did put both on the spot because I didn't want to give either a chance to say it wasn't necessary! (did this with ped GI too)  
- I stay only as an 'observer' as much as possible.  I let S answer all GI questions and ask his own questions (although I 'prompt/remind' him before apptmt if there are any issues, ie if remi has any implications re shoulder surgery)
- if I still have any unanswered questions, I only ask at the end.  

You may be surprised...  sometimes our kids have taken in more than we've realized.  S surprised me at some of our earlier apptmts with his questions/comments and use of terminology. 

- I also spoke with S re giving me authority over his records/contact with GI.  I made sure he understood he was giving me access to his med records before he signed the paperwork and he was quite happy to trade off privacy concerns if I was making all the arrangements!  :lol:  This has helped HUGE as I don't have to remind and wait for S to contact GI office with questions; just works more smoothly with the more routine things (ie things like 'S is on ABX, can he have infusion this week?")


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## Tesscorm

We have shoulder surgery date - Aug. 17.  Neither ortho nor GI had any concerns re remicade, so we're good with that.  As it happens, the surgery will be 3 or 4 days before his infusion so I may just push that infusion out  2 or 3 days - he'll be at the lowest serum level at that point and, in my mind anyway, this lowers even the low risk of infection. 

Although I will check if there's any issue with remi and painkillers.  Ortho said he would prescribe percocet since he can't have nsaids.  But, I don't think it's a problem??  

Apparently, the chest pain remains a medical mystery!   (But, it has been better...  maybe it's resolving on its own???)

Remi serum levels will be tested at next infusion.  Would be nice if we could lengthen the cyle!


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## my little penguin

Ds had oxyicodine when he had his tonsils out 
While on humira
Just held it a few days


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## Maya142

Shouldn't be an issue - we've used both Oxycodone and Percocet in the past (the difference is that Percocet has Tylenol in it).

Just curious Tess - is this an arthroscopy? We talked about doing an arthroscopy for M's hip and I got two different opinions about biologics - one doc said delay her infusion (she was on Remicade at the time) and the other said to just do it in the middle of an infusion cycle.

Just wondering because we may at some point need to do it for her hip and I would hate to have her delay or stop her biologic...


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## Tesscorm

Yes, it will be arthroscopic.  But, both his GI and ortho said they had no concerns with remicade and the surgery as arthroscopic has low infection risk.  

The doctor who told you to 'delay', were they concerned becauuse surgery would be right after an infusion or were they concerned about her 'next' infusion after surgery?

Although both have told me no worries, it's really for my own peace of mind that I was thinking to delay S's infusion post surgery by a few days.  He'll be having the surgery on the Wednesday and his infusion is scheduled for that Saturday.


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## Tesscorm

Not sure if this makes a difference but the arthroscopic shoulder surgery requires 3 small incisions...  perhaps hip surgery would require more incisions?


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## Maya142

He said to delay the infusion after the surgery. However, that was an orthopedist (and not a very good one at that -- he would not have done the surgery!) and M's rheumatologist was the one who said there was no issue if it was in the middle of the infusion cycle.

M was also on high dose Remicade (20mg/kg every 4 weeks) and Imuran, which might be why they were a bit more cautious with her.

We'll be seeing her (new) orthopedist soon, I suspect, and I will ask about what his recommendations are if he does think she needs an arthroscopic surgery. She has a labral tear (I can't remember if that was S's problem in his shoulder?).


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## Maya142

I think a hip arthroscopy is pretty similar -- I think they said two or three small incisions (but I don't really remember - it was a couple years ago when we discussed it in detail).


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## Tesscorm

Yes, I believe it is a labral tear.  The surgery is called Bankart repair.


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## kimmidwife

Our doctor told us to delay biologics for two weeks after surgery.


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## Tesscorm

Perhaps it depends on the extensiveness of the surgery?  It was actually both orthos (original one near school and new one) plus GI who all said it wasn't a concern.  IDK??  But, in any case, I plan on delaying his infusion a few days, won't hhurt and gives a bit of a time after... and he may still be in pain 3 days after surgery, so going and having infusion may be uncomfortable too.


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## Maya142

Yes, they told us that since it's a minor surgery, infection risk is low. But for a more major surgery - for example, a hip replacement, you'd definitely have to stop biologics.


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## Tesscorm

Some basic questions on remi serum test...  

How long does it usually take to get remicade serum/antibodies test back? 

What serum level is hoped for?  At what point is it too low or too high?

And, should antibody number be 0 or can it be slightly above 0 without being a concern?

Thanks


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## crohnsinct

Takes about a week.  

Desirable level differs from GI to /GI but I mostly here 4-7.  The newer studies and presentations are saying 10.  I have a chart from, a study at each level.  I will try to post it here.  

Yes!  I would hope for 0 but low levels are supposedly fine.  But IDK at what point the level becomes an issue.


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## Maya142

Tess just wanted to tell you - I asked M's orthopedist and he says for a hip arthroscopy or for a tendon surgical release (another minor surgery we are considering for M - also done arthroscopically), she wouldn't have to stop her biologic or Imuran. 

Of course, he says that he'd have to check with her rheumatologist and GI and they would make the final decision, but for a minor surgery, he'd be more worried about her flaring than about an infection.

We are really trying to avoid surgery, so not sure it will happen, but thought it might make you feel a bit better about S's Remicade and upcoming surgery!


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## Tesscorm

Thanks CIC and Maya.

CIC, if you have a chance, can you post that chart...  I'm curious about the results.  S had serum and antibodies tested at last infusion (May 28), so I'd like to know where he stands as far as targeted levels.  But, I'll wait until Thursday to start calling about results.  

I think S's GI was also questioning if serum level is too high??  He commented that S had been on abx a number of times over the past 12 months (that weird rash, bronchitis, etc.) and then said he wanted to test remi levels.

Maya, don't have dates in front of me but I know I checked S's surgery date vs his infusion dates...  surgery falls pretty close to mid cycle!  I was grateful for that.  Although, we were told the same thing as you - by both orthos and his GI.  

Now, someone should probably shoot me for zeroing in on one little comment but... 





> more worried about her flaring than about an infection


 ...is flaring after surgery a real possibility? :ack:  Funny that you mentioned it because this question had crossed my mind just a couple of days ago but I sort of shrugged it off...


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## Maya142

I actually meant flaring because of stopping the meds -- he said the worry was that we'd stop M's immunomodulator/biologic and then she'd flare and then recovery would be harder.

So it's sort of a tricky situation - don't stop the meds and then there is the infection risk, stop the meds and then there's the possibility that the kiddo will flare.

That said, I have heard of people flaring with surgery anyway...I can tell you M did not flare with her GJ tube surgery at all (and we didn't stop her biologics then).

However, both my girls have had their wisdom teeth out and we stopped their biologics for those surgeries, even though they were very minor (BAD idea!). 

BOTH girls flared and were thoroughly miserable. My older daughter actually missed a whole semester of school because of that flare...had to switch biologics.

So I'm definitely more worried about stopping the meds vs. not stopping them.

Will be thinking of S - I'm curious to hear about the Remi levels. Haven't ever heard of them being too high but that makes sense if he's getting infections a lot.


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## pdx

Tesscorm said:


> Some basic questions on remi serum test...
> 
> How long does it usually take to get remicade serum/antibodies test back?
> 
> What serum level is hoped for?  At what point is it too low or too high?
> 
> And, should antibody number be 0 or can it be slightly above 0 without being a concern?
> 
> Thanks


Our levels tests have taken 10-14 days to come back.  I can't remember exactly what range our GI aims for, but when E's levels came back at 1.2 and later 1.7, her doctor increased her dose each time.  Last month, her level was 3.9, and her doctor was happy with that number and didn't raise or lower the dose.  

E had scalp surgery back in January, mid-infusion cycle.  She was on antibiotics for a week after, and she didn't flare or get any infections.  She had a few night sweats during the 2 weeks after the surgery, which was worrisome, since that was one of her original Crohn's symptoms, but she didn't have any other symptoms and her inflammatory markers stayed low.  

Good luck with everything.  Let us know how the levels come back.


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## Catherine

Maya142 said:


> However, both my girls have had their wisdom teeth out and we stopped their biologics for those surgeries, even though they were very minor (BAD)


Actually surgery within in the mouth is high risk as normal occurring
Bacteria of mouth can enter directly in the bloodstream.  Very bad


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## Tesscorm

Glad I didn't know this about mouth surgery when S had his wisdom teeth out!    Dentist and GI were both fine with doing the surgery mid-cycle, so I didn't worry any more about it...  but, I've heard more about dental surgery since then and would've worried more (needlessly) had I known more at the time.  Sometimes TMI isn't a good thing!  :ybatty:

Maya - thanks, makes sense now, re being off meds and flaring.  My father had surgery recently and, while he's recovered from surgery, the trauma of it (physically, mentally, etc.) took a huge toll on him.  I guess that's what was in my mind when I was questioning if surgery could have a negative impact on a body and if it could trigger a flare.  But, really, arthroscopic is not as invasive and, likely, less traumatic on a body.  

And, re levels being 'too high' - I don't think I've ever heard of this either but, the conversation went exactly as I posted, so the frequency of abx seemed to be the trigger for the GI to order levels test...  to me, seemed to imply he wanted to see if they were too high??  I've always read that being on biologics doesn't increase the number of infections you catch but, perhaps, that S needed repeated treatments to get rid of the rash and some chest colds/bronchitis means he was just having too tough a time getting rid of them??

If it takes 10-14 days as PDX mentioned, then I'll give it a couple of weeks to start asking for results.  Hate calling too early because then I just end up badgering nurse for results...


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## crohnsinct

Yes Tesscorm...it is a balancing act for the GI's...too high and you leave the patient at a slightly more increased risk of infection...too low and the IBD flares...the trick is finding the sweet spot.  So while that chart I am going to post as soon as I can figure out how to copy and post it here will definitely show the higher the levels the greater control over IBD you have, it was primarily concerned with IBD control and doesn't take into account infection risk etc.


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## Tesscorm

Thanks CIC.

Found this article...  from my understanding, the optimal levels to result in remicade efficacy are a minimum of 0.5 μg/mL remi serum level (no max limit mentioned) and a maximum of 10 U/mL for antibodies.

Article only discussed on levels of efficacy, no mention of infections, etc.

Here's the link

*Measurement of Infliximab and Anti-Infliximab Antibody Levels Can Help Distinguish Maintenance Versus Loss of Response*
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3317512/


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## crohnsinct

> b ungar et al (clin gastroenterol hepatol 2016; 14: 550-7) report median serum levels of infliximab (n=78) or adalimumab (n=67) in correlation with mucosal healing.
> 
> In this retrospective cross-sectional study of adult patients with ibd (median age ~35 years), the authors found a correlation with higher drug troughs and mucosal healing.
> 
> “levels of infliximab above 5 mcg/ml…and levels of adalimumab above 7.1 mcg/ml identified patients with mucosal healing with 85% specificity. Increasing levels of infliximab above 8 mcg/ml produced only minimal increases in the rate of mucosal healing, whereas the association between higher level of adalimumab and increased rate of mucosal healing reached a plateau at 12 mcg/ml”
> 
> the authors propose a “therapeutic window” of 6-10 for infliximab and 8-12 for adalimumab.
> 
> Clin gastro trough levels


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## Tesscorm

hmmm, just thinking that maybe my wording that remi levels are 'too high' is incorrect.  More likely, if GI sees that there is a large enough gap between his current levels and the minimum (0.5), he might consider extending S's cycle (S is on 6 weeks now).  So, not really that the level is 'too high' but more a matter that it's higher than it needs to be??

I wouldn't mind stretching it out!    I know that once you're on remi, etc, the dosage doesn't really have an impact on the level of risk but...  logical or not, having fewer infusions would still make me feel better!  :lol:  And, I know S would prefer few if possible.


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## crohnsinct

Exactly Tesscorm...That is what happened with O...her levels were higher than they needed to be.  Plus she has that Remicade induced psoriasis so lower Remi in the hopes that psoriasis would go down. Also, docs trying to be cost consious...cost benefit and increase QOL...less infusions less interruptions to kids schedule etc.  

When O came out high she was at every 6 weeks and we stretched to 7.  haven't taken a level yet to see the effect but so far she hasn't gone off the rails so assuming it is good.


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## Tesscorm

Will be interesting to see his current levels.


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## Pilgrim

crohnsinct said:


> View attachment 3427


:medal1::medal1::medal1:

Ha! That = 3 glasses of wine. Don't spend them all in one place. THANK YOU for posting that study! My GI nurse just said he had no idea what a desirable level would be for Humira and now I can send him a chart.


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## Tesscorm

Got S's results...

Remi serum level at 11.83
Antibodies <2

So, perhaps we will be able to drop his dose/extend infusion cycle.  Does anyone know if you can have a dose of less than 5 mg/kg?  This is S's current dose, every six weeks.  In one of the articles I read, it seemed to imply it is better to drop dosage but maintain frequency to minimize risk of antibody formation??  Any thoughts?

And, anyone know how responsive remi serum levels are to a change in dosage/frequency?

Also got lab results for latest labwork.  Couple of the liver numbers were off:

ALT 54 (normal 12-49)
GGT (gamma-glutamyltransferase) 87 (normal 15-73)
AST 33 (within normal range, 0-36) but my chart shows it has been trending up in last 18 mos.

I don't get copies of every test anymore, and it's possible I have a set of results at home that I haven't entered into my spreadsheet but, I would remember if his numbers were off in the last set of results that I've seen.

Now, I know one test result means nothing but...  always makes me nerevous when I see 'red' pop up on my screen!


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## Maya142

I know that in RA, they sometimes use 3 mg/kg of Remicade. 

I'd guess that decreasing the frequency -- extending infusions to every 8 weeks, might be more common than going lower than 5 mg/kg though.

I have no idea about the liver numbers, but to me, they only look a tiny bit high. I wouldn't worry too much (I know, easier said than done!!).


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## Tesscorm

Yeah, not too, too worried about numbers...  although, you can bet I'll be asking for a copy of the next labs asap!  :lol:  Of course, had to start googling...  and found one other 'connection', his creatinine levels were a bit off as well - 58 (norm 63-115), didn't mention it above because I didn't think there was a connection...  But, again, not going to let myself overthink this...  it's only one test result and, as you said, they're only slightly off.  (Everything else was normal.)

We'll see what his GI says about remi levels at his next follow-up (Aug. 15).  I'm sure S would prefer to extend the cycle...  if there's no difference as far as antibodies, etc., I don't have a preference.


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## Tesscorm

Just an update (and a record for me )...  all good at yesterday's GI apptmt.

Crohns-wise, all fine.  MRE was good and labs good.  The ALT, GGT that were previously slightly elevated are fine now, so just a blip.

Re remi - although S's levels were at 12 and antibodies <2 (good is <5), GI doesn't feel remi level is high enough to extend cycle.  Said there's not an absolute 'minimum' level although current thinking is above 8.  But, he has patients as high as 20-25, so 12 isn't that high.  And, he said it gives a bit of a cushion if he ever needs to delay his infusion by a week.  So, we'll be staying at 6 weeks.

And, that was it...  short and sweet.


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## Clash

All that sounds like good business! Glad things are rockin' right along in the CD dept!


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## CarolinAlaska

Good news and glad to hear it.


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## DustyKat

So fab to hear Tess! Long may it continue! :dusty: 

Onwards and Upwards!


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## kimmidwife

Love these kinds of updates!!!! great to hear!!!!!


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## awmom

So glad to hear things are going well!


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## Tesscorm

As I mentioned in S's thread about his shoulder surgery, I have a question about collapsing veins...

S has never had a problem with blood work nor his infusions.  But, last week, he had an MRE on Wednesday.  He said they had a really tough time finding a vein for the injection and had to poke him 4-5 times, in the arm and hand before they were able to get it to work.

I didn't think anything of it but then it happened again today.  He said they had a really tough time putting the IV in and nurses said his veins were collapsing.  Again, it took 4-5 pokes, in different locations (nurse said she's never had so much trouble with anyone) before it worked.

I'm not sure which arm was used at the MRE but, today, S said it was the opposite arm from where he normally has his infusion (I'd initially thought scarring).

In both instances, he'd been told not to eat/drink for four hours before procedure so, I suppose it could be a bit of dehydration???  But, everyone would be told not to eat/drink for four hours, so if it was only dehydration, wouldn't this happen to lots of people?

What is a collapsed vein??


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## DustyKat

Dehydration would certainly be the first thought Tess. The next question would be was it just 4 hours before the procedure or longer? Like if the test was in the morning was he actually fasting a lot longer than 4 hours. 

Then there is the person taking the blood or inserting the IV. I know I look at Matt’s veins and think, you couldn’t possibly miss those! And yet some phlebotomists are hopeless, they can have a couple of goes on each arm but others get his blood first time every time. We have the labs and phlebotomists down to a fine art! :lol: 

A collapsed vein is a vein that becomes blocked. It is a temporary condition due to swelling and inflammation caused by trauma. For some people veins become unusable due to repeated trauma but that is normally the realm of those with chronic drug use or conditions where veins are required for fistula’s, like haemodialysis.


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## Tesscorm

You are right, it was more than 4 hours because both were in the morning... :ybatty:

AFter the MRE, S had come home complaining that the person giving him the injection 'didn't know what they were doing!'...  and, I assumed he was likely right.  When it happened again this morning, it just seemed odd to need 4-5 tries, two occasions in a row.  But, yes, in both instances, it was at 9-10am.

He has his next infusion on Monday, so we'll see if there's a problem again...???  He always has the infusion on his left arm but, this time, they'll have to do it on the right (where they had difficulty today) as it was his left shoulder that was operated on.  If no problem, then would seem that the problem was dehydration.  

Thanks Dusty


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## my little penguin

Ds had that issue also with his last admit 
Three iv sticks ( two collapsed on them ) 
Plus multiple blood draws that would even with the iv team brought in
In his case he had 4 admissions in two months plus multiple outpatient blood draws 
His veins had just had enough 
We were also told one of his veins right arm where they always have the remicade infusions 
Iv etc was now thick/tough from scar tissue 
So something to watch for
They suggest we have them move up or down from on the same vein so they hit a different spot


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## kimmidwife

what Dusty and MLP said are both true. Probably a combination of factors caused it. Dehydration and possibly a newer nurse doing it. Also many people have a good arm or a bad arm for blood drawing. It could be this side is not as easy to find a vein on. I have that issue sadly. My right arm which I can no longer get stuck on due to my illness was an easy stick and my left is way more difficult. A great way to build the veins on that side is to lift weights with the bad arm. Maybe he could try doing some weights with that side while his other side heals?


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## DanceMom

A has issues with collapsed/blown veins too (not a dehydration problem). We've started using her hands now, but those veins tend to roll so easily that she can't move much while infusing. It's less than ideal.


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## Tesscorm

Thanks everyone.  

I'll mention changing his remicade location to S.  I rarely go to his infusions but, the few times I've gone to pick him up, I've always seen it done on his left side.  I'll explain the potential problem and remind him to ask them to, at least, switch arms at each infusion.

DanceMom - yes, they were trying his hands too and having the same problem.  Must have been dehydration because it couldn't have been scar tissue in that location.


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## CarolinAlaska

Jae's hematologist recommends hyperinflation prior to any IV stick due to inflammatory reactions of her veins.  Maybe when you have to fast, your can supercharge the day before?


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