# C winter update-frustrated



## Clash

Just left GI, C is getting infusion. Things have been going reall well. 3-4 days ago bms picked up a bit complained of some fatigue. 

So I can tell C is gaining height, you can see it on him. Sure enough another 1/8 inch, if this stays on par then he would have a normal height growth for the year.

Now the bummer he weighs 111.5 down from 116.5. 3 months ago and 117 six weeks ago.

C didn't want a 5.5 week Remicade so we are going up on Remi, it is higher than the standard dose of 10 whatever so we had to get ins approval, they agreed so moving forward.

CD freaking sucks!


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## Jmrogers4

Hopefully once height levels out weight will be put on.  Maybe energy going towards height growth and once that slows will go towards weight.  It does stress you out though huh?
Hope the extra Remi is the kick to keep things under control and the fatigue and extra bm's are just a little bump.


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## Tesscorm

Ugghh!!!  I hope the weight loss isn't really indicative of any crohns-related issue (one can wish! )  Stephen's weight does fluctuate a bit; as it generally goes back up a few weeks later, I haven't worried too much about it.  Has he had his weight drop and then bounce back again before (without any crohn's related problems)?


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## Clash

I think the issues the last 3 or 4 days is just that the Remi runs out right before the next infusion.

The weight I'm not sure about I mean, his does fluctuate but generally not souch.


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## crohnsinct

Clash said:


> CD freaking sucks!


You can say again!  I especially hate how batty it can make us over every little thing.  

Ugh!  That is quite a weight drop and with height gain the way our GI puts it it is even more because with height they should be gaining...(sorry to be a bummer)...BUT O's doc says CD likes to attack vertical growth first and harder than weight and with some growth going on I would think that is the one positive take away here that you can hold on to. 

I hope the compromise with increase in Remi dosing straightens all these symptoms out fast!


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## kimmidwife

It is definitely a good sign that he grew in inches. Maybe he needs to add some extra calories since growing does use more energy. Does he drink any kind of shakes or anything? Maybe he would be willing to  add one a day if he isn't already.


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## Farmwife

Ya for the height.
My son always loses a bit when he has a growth spurt. 
The in a few weeks he puts it back on plus a few pounds more.


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## Clash

It amazes me how much difference the Remicade makes and how quickly. By the time we got home he was singing its praises.

I do feel the weight loss is related to the cd but not to the downturn of the 3 or 4 days before Remi. I mean this kid eats all the time. I think he isn't in full remission(hence the issues right before next infusion) and that there is possibly scarring that is affecting absorption. 

We are supposed to try to get him back on the shakes, he goes on and off because he hates them, they make him gag. We have GI appt in 6 weeks to discuss next step.

My appointment with the cardiologist is today.


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## Mehita

We're going in for Remi #3 tomorrow... or Magic Mickey Medicine as its called around here.

Good luck today!!


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## Clash

I hope his infusion goes well! C started 3 days before the infusion saying man I wish my infusion was today! 

I'm going to ask for a fecal calprotectin right before his next infusion. They did blood work this infusion since C had complaints(he had scheduled blood work last infusion) but doc wanted to check vitamin levels as well yesterday.


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## Clash

I haven't heard from the nurse about C's lab results but I felt like it would be tomorrow anyway.

So it was quite the excitement at the cardiologist today. They got me on the table took my blood pressure and it was low, then my hr started up and I thought I was going to pass out a couple of times. (I thought it was nice of my body to have the episode so the doctor could see it first hand!)

They did and echocardiogram and the doc said my heart looked good and strong. She feels like I may have some form of POTS so I am going tomorrow for a tilt table test. 

I'm on metoprolol 12.5mg, I originally took the 25mg and my blood pressure dropped to0 low. The Cardio said that might be the case with the 12.5 as well and if I do have POTS then it might be a challenge we face in trying to find a med at a strong enough level to lower hr without so affecting blood pressure. Of course, all of this is premature since I haven't had the tilt table test yet.

Oh and since I refuse to pass out when these issues start the tilt table test is considered experimental(you have to have passed out 3 times for it to be deemed not experimental) the doc is having to write a letter to try and get it covered. So tomorrow I will self pay, 605.50 dollars. Whooohooo!


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## Jmrogers4

Merry Christmas to you.  Not what you wanted to spend Christmas money on.  Hope it gives you answers and a good treatment plan though.


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## Mehita

"All I want for Christmas is a tilt table, a tilt table, a tilt table..." sung to the tune of All I Want for Christmas is My Two Front Teeth.


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## Clash

Okay I have a question for those in the know about mast cell activiation, I'm trying to read about POTS and apparently there are different types or characterizations which can affect treatment, ummm I'm already taking a beta blocker so...



> MCA should be considered in patients with POTS presenting with flushing. These patients often present with a typical hyperadrenergic response, but β-blockers should be used with great caution, if at all, and treatment directed against mast cell mediators may be required.


I'm assuming the tilt table test isn't going to tell me if I have MCA but if one of the knowledgeables like my little penguin or Dusty or anyone else versed in this could give me a run down of the general symptoms of MCA that would be great. I'm only concerned because if this is POTS, I do have flushing with it.

I looked up the symptoms of MCA:



> mild pruritus, anaphylaxis and life-threatening hypotension, tachycardia or unexplained arrhythmias, and neurologic or psychiatric symptoms


I've never had anaphylaxis and though I have had low blood pressure(due to the metotoprolol) I haven't had life threatening, I have had problems with anxiety, there is flushing with my tachycardia and of course I have GI issues and my back itches all the time but there aren't bumps or anything. The only other thing is though I had allergies as a child, I always had cats and was never allergic to them but now I can't get near my cats without, mucus build-up, itchy eyes, thickness in my throat. And I also don't know if the MCA info I am finding is credible as far as symptoms.

Sorry guys, I'm rambling. It has been a long day and I'm dreading tomorrow, something about making me do the test for such and such time or until I pass out has me a wigged. I hate the way the tachycardia makes me feel. The shortness of breath is the worth and they didn't relieve it today, it just had to pass and that has made me so weak!


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## my little penguin

http://www.karger.com/Article/FullText/328760


http://www.medicine.wisc.edu/~williams/mast_cell_activation_2011.pdf

http://m.gut.bmj.com/content/59/9/1213.short


That should get you started
Fwiw atopic people have a lot of the signs of mcas but most do not have it 
DS included.

Good luck


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## Clash

Thank you, thank you, thank you, my little penguin! I so appreciate the links.


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## kimmidwife

I looked up POTS because my memory was misbehaving at the moment and I could not remember what it was exactly. I usually don't look at Wikipedia but this actually gave a very comprehensive overview of it. One interesting thing the article mentioned was to rule out several things including Lyme Disease. I am wondering if you were tested for Lyme? A friend of our's son contracted Lyme this past summer in the middle of Staten Island. Not a typical place for Lyme to be caught. His main symptom was all of a sudden having double vision. She initially took him to the doctor and he said it was a virus. Then after a few days it did not go away so they ended up taking him to see a neurologist who had sent him for an MRI and they were actually able to see the infection in his brain. He was on IV antibiotics for over three months. Thank goodness he is doing much better. Anyway Lyme can be very tricky to diagnose and is very often missed which is why I bring it up. There is a special test done only at a lab on California that a lot of people recommend getting done if you have been already tested with the regular tests and it was negative. Might be worthwhile discussing with the doctor. 
    Good Luck Today. My Dad had the tilt table 5 weeks ago. He passed out when he bent over to take off his shoes. We rushed him to the hospital and they did not find anything so the doctor recommended the test. They found out he has bad orthostatic Hypotension. His blood pressure decreases when he changes positions to quickly. He has to up his salt and water intake and be careful when bending over.


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## Tesscorm

Hope you get some answers from the test today! :ghug:


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## Sascot

Hope the test goes okay and you get some answers.


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## Clash

Kimmidwife, I will ask the doc about it.

I did the tilt table test today and I didn't pass out. The tech said I was borderline POTS, and probably had it. My follow up isn't until January 14th.

He said that lying down, I had a nice easy heart rate 70's to 80 but standing I had an all over the place heart rate, from high 90's to 124. He said my blood pressure is low and I have to eat more salt and drink more water.

Here is the thing, I told him and he told the doc I was started on 25mg metotoprolol but it made my blood pressure too low so it was halved to 12.5mg. Still my blood pressure is low(which is what the px is supposed to do) but it is not lowering my heart rate. The doctor didn't mention a med change and I have to wait around for 3 weeks with these tachy incidences and feeling like crap/cold/fatigued because this med I am on is making my blood pressure too low but not helping the problem. I swear I don't understand docs.


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## kimmidwife

That I agree with!


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## Clash

I'm not a big salt eater and I'm not entirely sure how to get more salt into my diet. I didn't even cook with salt for years, and I have never really salted my foods. That is not to say I don't consume all the processed food that is high in sodium. 

Oh and the Ped GI nurse called while I was in the test and left a message saying C's lab work was perfect. The doctor was really pleased...ummm ok so do we still need the increased dose of Remicade? I'm going to call on Monday and ask but I am assuming that the 3-4 days of ick right before the infusion isn't enough to affect labs and plus C's labs are never a great indicator. He is feeling fine since infusion, go, go, go, eat, eat, eat, eat, spend money, money, money....teenagers!


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## crohnsinct

Well glad to hear C is feeling better but that was my first thought...his labs don't indicate inflammation!  Just FC.  Did he go back on the Mtx?  I think I remember he was going back on.  Don't ask me why but O's doc prefers shortening cycle over increase in med.  If this cycle goes the same as last I would try shortening with the one.  Gosh I remember before we figured O's regime out...she would say, "Mom it is time for infusion"  Then came the d and blood.  I couldn't get her in that chair fast enough.  I hope they figure out what works for him.  Our doc felt adding the Mtx helps get them over a few day hump if they are burning through the Remi too fast and on a short cycle.  Now I am rambling. 

As for you....UGH!  So sorry things are still muddy and you are having to deal with this!  But sounds like you have the cardiologist's ear and she is interested so here is hoping she figures this thing out.


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## Clash

Thanks CIC!

C is on 7.5mg of MTX like O. I am hoping the upping of the dose will work for him because right now he is adamant he doesn't want to move the schedule up. I think it is just that we travel for the infusion since we do it at the GI office. We have considered moving it closer to home. I know our local hospital does them but it would be more expensive plus I'm not terribly fond of our local hospital. The next closest play is 45 minutes away. I might could bribe him if I allowed him to go on his own but still looking at bigger cost since it is a hospital as well.


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## DustyKat

I don’t have anything the add to what mlp has posted re: MCA Clash. It’s not something I have really looked into. 

I surely hope you get to the bottom things though and if it is POTS a regimen that suits. The possibility that POTS may have an autoimmune aspect is an interesting take on things too. 

	
	
		
		
	


	





So good to hear that C is growing!  But I hear you on the weight aspect of things and the shortfall with the Remicade.  Tess, you posted a study regarding whether it is better to up dosage or decrease infusion intervals didn’t you? With the consensus being that decreasing infusion time had better results?? Ultimately though it will boil down to what C wants though. :ghug: 

Dusty. xxx


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## Tesscorm

Thanks Dusty, I'd forgotten about this study...  study was done for RA but does discuss the differences in success between increasing dosage or frequency.


http://informahealthcare.com/doi/abs...09740701416758

Conclusion: Infliximab dosages and dosing frequencies are increased frequently in clinical practice: after 3 years, only 42% of patients continued on the original schedule. While frequency increases appear to result in better effect persistence between infusions, the gains from dosage increases are small and may not be better than chance. These data suggest that the total amounts of infliximab needed to obtain satisfactory disease control are greater than the amounts suggested by the original dosing recommendations, and may have bearing on pharmaco‐economic issues pertaining to treatment with infliximab and other therapeutic agents.


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## Farmwife

Clash
I don't know if this will help but a teenage girl that rode the shuttle from our hotel while at Mayo was just dx with POTS. Her mom said her morning routine was to eat some saltine crackers in bed, then stretch and THEN slowly get up and lift weights. She has to do this every morning or she would pass out when she stood up. Also her docs said add salt to her salt.


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## my little penguin

Tess link is broken??


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## Tesscorm

Here's the link again.

http://informahealthcare.com/doi/abs/10.1080/03009740701416758

Otherwise, try from my original link in this thread, post 7
http://www.crohnsforum.com/showthread.php?t=57023

(link works for me if I go to the original thread)


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## Clash

So just an update:

First C, things have been flying right along. We were going to get his flu shot two weeks after the last remicade but it was finals time and he always feels a little under the weather for a few days after the shot. So we were going to get it this week. He started running fever Saturday night, we went to the doctor today and he tested positive for the flu.

The doc prescribed Tamiflu. Does anyone know if he can have this with Remicade, GP said no problem but I have a call into the GI.

I now have a 30 day heart monitor on. The doc thinks POTS and neurocardogenic sycope, but every beta blocker they have put me on has given me horrible side effects. So far tried Toprol xl, florinef and pindolol, and now they want me to try Cardizem. 

Also I had my Vitamin D level checked, it was 14! And also low on B12.


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## Jmrogers4

Hope the flu passes quickly with no problems.  Don't know anything about Tamiflu - sorry.
Hope they get a treatment in place that you can tolerate soon.  Maybe getting your Vitamin D and B12 up will make a difference.


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## Clash

I feel so horrible for putting the flu shot off, we actually went to Walgreens one day to get it but since C wasn't 18 he couldn't get it there. Ughhh.

His fever got to 103 Saturday night but has been from 99-100 on fever meds. Then today the fever went away for most of the day, so at the doc appt he had no fever. Now tonight it is back up to 102.7.

The GP didn't seem real concerned about him having the flu on Remicade/MTX but I am. I just wonder at what point before I grab him and run to the ER.


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## Brian'sMom

DS tested positive last year with the flu. We did Tamiflu while on Humira. It cleared up the Flu quickly. I was impressed. (We did catch it really early)


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## Clash

Thanks for your experience, Brian'sMom, the GP said we caught it early and that was a good thing.

His started with just the low grade fever, then headache now he is complaining about joint pain. I am flooding him with fluids and he took his first Tamiflu as soon as we got back from GP.

Scary thing was we called all around and all of the pharmacies were out of Tamiflu! Finally, Hubby found one Pharmacy that had one pack left, we zoomed straight over there!


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## Tesscorm

Hope the tamiflu helps him get over the flu really quickly!!

And, I hope, you too find some relief soon!!!  Perhaps as Jacqui mentioned, getting your vitamin/minerals levels up may help! :ghug:


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## my little penguin

just a secret for next year- the in store clinics - take care( walgreens), minute clinic (CVS) etc... will give flu shots and are covered by your insurance- so in theory they can't get the flu shot at the pharmacy but can get it in the "Store clinic" by the NP for those under 18 .

plus flu shots take two weeks to work -so don't beat yourself up.

tamiflu really help ds before.

hope the fluids help


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## crohnsinct

When they feared O might have the flu Tamiflu was suggested with just a little warning that it could cause diarrhea. 

Poor pumpkin.  I hope he perks up a bit for Christmas.


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## kimmidwife

Sorry he caught the flu. Don't beat yourself up though. The statistics show the shot only is 50% effective so he could have caught it even if he had the shot. Tamiflu works great though. Hopefully he will get better fast!


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## Sascot

Hope he feels better soon!


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## CarolinAlaska

Sorry to hear that he got the flu   I hope he's feeling well soon.


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## xmdmom

Hope he is already feeling better and that no one else in the family catches it!


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## Clash

So the tamiflu kicked butt and although he felt pretty bad for a day or two it was all over pretty quickly for C. The only downside was the weight loss, uggh, we have added in smoothies with boost in an effort to put some weight back on. He is feeling great and hasn't slowed down over break.

I was admitted to the hospital earlier this week, got out on New Years Eve. It all started with a flush over my body, then feet and hands went numb and tingly and legs started cramping. Cardiologist thought it was low potassium but admitted me since I've been back and forth to ER here lately.

My heartrate stays fairly high. Doc still thinks POTs and has me on Cardizem since hospital stay. I'm also supposed to take in huge amounts of fluid and a high salt diet. Problem is the high salt is cause the gastritis to flare.

So once in hospital and on constant fluids and starting cardizem I felt awesome. I thought it was the cardizem. My heart rate was mid 60s to low 70s lying down and low to mid 80s standing in hospital..  Once I got home the rate started going up again, 90s lying down and 120 or so standing up. I now think it was the constant fluid helping more than the new med. Oh I'm also dealing with constipation and bloating.

We have decided to see the docs at mayo and have an appt the first of February. We actually wanted to go to Vanderbilt because the have an autonomic dysfunction center that is supposed to be awesome but its like a 9 month wait.


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## DustyKat

So fab to hear about C! Yay! I hope he soon gains the weight back. :ghug: 

But you Clash :ghug: I am so sorry to hear that things are still topsy turvy for you and I can so see the catch 22 of a high salt, high fluid diet. I wonder if enteric coated salt tablets would be better for gastritis rather than ingesting the salt through diet?? It won’t eliminate the issue of fluid retention though.  Such a delicate balance. 

I hope the docs at Mayo have a better solution and even better if you were able to get an earlier foot in at Vanderbilt. No chance of someone doing you a favour? 

Dusty. xxx


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## Clash

I was really interested in going to Vandy but the cardio I'm seeing is not very forthcoming. I point blank asked did he think it was POTs and he said that is what I'm thinking. In the hospital they ran numerous blood test. The only thing that showed was potassium was a tad low and as well as lipase being off a little he said. I asked about the vitamin D level being *14* and isn't that concerning, he said its low but not a factor in your symptoms. 

So I'm hoping that mayo can get to bottom of everything and if it is dysautonomia then maybe try to get into Vandy.


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## DustyKat

I hope they can too Clash. :hug: Good luck! 

Some time ago when researching through low Vitamin D I came across references to POTS and dysautonomia’s. It seems that those suffering these conditions frequently had low Vit D and whilst they could not find a direct link between low Vit D and syndrome/disease symptoms correcting the deficiency often resulted in a greater feeling of well being for the patient. 

Dusty. xxx


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## Farmwife

I hope Mayo can give answers. Are you going to the in FL?
Are you able to still get around and do things?


HUGS


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## imaboveitall

Violet has POTS (HR typically goes from 80's sitting to 120+ upon standing), her hands are often mottled and she gets "visual snow", (white dots in her field of vision), other weird stuff attributed to vascular issues related to dysauto. Also diastolic hypotension, her diastolic BP often in the thirties.

She was trialed on Florinef and atenolol, common use drugs for POTS. They didn't help her but they do help many, check into those. Hyperhydration and sodium loads, for sure are advised, she carries small packets of soy sauce with her for emergency sodium.

Vit D levels always low end of normal until last time in Nov when they were mid-range normal.


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## Clash

Dusty- I've read similar about vitamin D levels and disautonomias, I was just hoping the.doc would give me that connection too, I'm working on my Vit D levels now.

Farmwife- yes in Fla. I'm able to get around I'm just wearing out really easily. When the potassium was just a tad low my legs were all wonky so not good on my feet. The doc is unsure why I react to the potassium just being a little low.

Imaboveitall- So far I've trialed toprol xl, florinef, and pindolol. I keep having horrid reactions to the beta blockers and they drop my blood pressure. I took the florinef with the pindolol and ended up at ER, I think it was the pindolol but he took me off both.


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## Jmrogers4

Oh Clash I so hope you get answers soon and a treatment plan that gets you feeling back to normal.  I don't know anything about POTS but just wanted to send you a big hug!
Glad C is feeling better and able to enjoy the last few days of break


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## Clash

You know it is strange. We all know the frantic research that began when our kids were diagnosed. A chronic illness that is incurable, with many facets regarding treatment, prognosis, EIM's.

It is the same with POTs, I try to stay away from most of the forums or blogs because, like here you get an overwhelming number of people that have the disabling level of the syndrome. But the research goes in so many different directions with very few concrete answers.

I've read about one study done by a cardiologist in Texas that thinks POTs mimics the deconditioning NASA astronauts face after returning from space. In a small study, he used an exercise protocol for astronauts on POTS patients, something like 10 of the 17 studied no longer qualified as POTs dx after the regimen. This information has been met with extreme divisiveness among POTsies. You can now get the protocol through your doctor contacting the cardiologist at no charge. I'm seriously considering this and will be discussing it with the docs at Mayo.

For some reason, I can read through the hours of research on CD, treatment, etc and come away feeling like I have gained some beneficial knowledge. With POTs it seems much more difficult to understand all the facets. There can be different "categories" of POTs and most of the credible research suggests it is important you find out what category you are in which involves testing. The cardio I have now, seems uninterested in all of this so I am hoping to get those answers as well at Mayo.

There can be some sources that cause POTs as well and I hope to be checked for those. The most common is Ehlers-Danlos syndrome, which I don't believe that I fit at all.

Thank you all for your support! Such a great place with great people here and it definitely gives me strength during the uncertainty!


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## imaboveitall

The link to Ehlers-Danlos has to do with the laxity of the tissues, including vessel walls. Interestingly, Violet has joint laxity, dislocates often, but does not have an Ehlers-Danlos dx.

Dysauto is indeed a frustrating thing, as it can present not only different ways with different pts, but different ways in the same pt. V has had temperature dysregulation for example, as a dysauto related symptom, then suddenly she didn't. Also the beta blockers can/do lower BP, yet in V's case  were hoped to RAISE her low diastolic BP.

Hydration and sodium loads are the only things that give her some relief.


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## Clash

Yeah, I read up on it some. I remember something about hypermobility of joints which is not an issue I have at all.

I am interested in the Mast Cell Activation Disorder association, with POTs as those with that connection should not be on beta blockers or calcium channel blockers, as I am. It also interests me because GI issues predated the tachycardia by a few years and I do have chronic gastritis that is h. pylori negative and experience flushing both of which are strong indicators when you have POTs that you should be tested for MCA. Of course there is also the fact that C has Crohn's.

It frustrates me more than anything, I mean I sit around literally trying to will my heart rate to a low 60! Ha, it actually makes sense as I spent some nights trying to will C's issues away as well. If it worked I would make a great superhero with a unique power...willpower! Ha!


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## DustyKat

Bloody hell! My heads mashed just reading what you have written Clash! Little wonder you don’t know whether you are coming or going. :confused2: 

Thank goodness you are wicked smart!  

Dusty. :ghug:


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## crohnsinct

Was just praying for you and C yesterday and today.  Overjoyed at the C update but so sorry about all you are dealing with!  What an incredible amount of information and if thens you are having to juggle.  Good thing you have you on your team!  I hope Mayo really gets a handle on things and comes up with a good plan!


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## Brian'sMom

Sending support your way that Mayo helps you.   
(Glad the Tamiflu worked for C)


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## my little penguin

http://mastcelldisorders.wallack.us/yabb/YaBB.pl?board=Mastodoctors

May help you find a good mast cell doc near you.


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## Clash

Thanks you guys for all the support and info!


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## imaboveitall

Clash this will sound odd but V also has/had a mast cell disorder, urticaria pigmentosa, from ages 7mo to 6yr. (resolved without tx). It is the cutaneous version of mastocytosis and I had her tested for gut masto at scopes, also had a tryptase level done. Both negative. 

A high tryptase level is associated with systemic masto but NOT WITH mast cell activation disorder (MCAD). Well worth investigating, especially if you have the random flushing. V had that for years when she had the skin lesions.

The response to mast cell degeneration is similar to dysauto reactions.


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## Tesscorm

Clash, I'm glad C is feeling better!! 

But, in Dusty's words, my mind's mashed :lol: at all it seems you are going through!  As if you didn't have enough worries!   I do hope you can get some answers and get moving with feeling better! :ghug:


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## Clash

imaboveitall, that is where I'm not sure I match with MCAS as I have never had uticaria in any form although I do experience pruritus mainly on my back and head, it is exacerbated when I sweat.

Another odd thing, I have had cats all my life, throughout out childhood and adulthood. Last year we adopted two cats and I can't be around them. After about 10 minutes of contact my eyes start itching watering my nose fills with mucus and my throat gets thick causing short of breath. How odd is that to get an allergy at 39? 

I've read that a bone biopsy is the gold standard for MCAS? But that was just lightly browsing since I don't really know where to start with it. I have an appt with my GI this Thursday and he knows I'm going to be asking about MCAS, I could tell from his nurse's convo with me that he doesn't think I have this.

I guess time will tell. I just want to rule out anything serious causing my POTs before moving forward on just a treatment regimen, kwim?

I've read ovarian tumors as well as something with the adrenal gland can cause POTs like symptoms. I do have an endometriomia(not proven by laproscopy only by vaginal ultrasound but it has shrunk which gyn says is a good indicator it is nothing insidious) on my right ovary. We are going to check it again in two weeks just to be sure.

The only other thing is a couple of weeks ago I had a severe bladder infection(I was having no symptoms they just found it with routine sample at gyn ofc. she was surprised I was having no symptoms with the severity of infection) I took the antibiotics, then a week later retested, no infection present but trace of blood. GP chalked it up to being on my period. 3 days ago I had gyn test and no infection but trace of blood, minute trace. I go tomorrow to give another sample and they are going to culture it.

Just ready for some answers


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## my little penguin

Allergy can start any time there is a change 
Puberty or menopause
Keep in mind chemical changes happen long bettors the physical changes 
So they could explain the onset of allergies


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## kimmidwife

Clash,
    The trace of blood in urine should be checked out if it continues however some people just have it. I always have microscopic blood in my urine. I had all the workups done and everything was negative. My doctor told me some people just have it with no explanation. I am glad you are getting the ovarian endometrioma checked out. If it worries you push for a biopsy. Definitly work on the Vitamin D if they won't give you a prescription get an OTC one. Keep us posted when you are going to Mayo.


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## Clash

kimmidwife- I have been having this endometrioma checked every six months for the last two years, I had just moved to once a year after having it checked last February. I have had issues with menstruation where the schedule is all wonky and the gyn finally admitted I probably have endometriosis. She gave the option of birth control or some type of uterine ablation to decrease the amount of bleeding or a hysterectomy in which they would remove the endometrioma and ovary if necessary. That has now been put on hold until we figure the heart thing out.

My Little Penguin, that is good to know. I have had hormone panels done a few times and all has come back perfect. I was hoping all my period issues and flushing was related to that but no such luck. I hadn't even thought of allergies being related, thanks!


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## imaboveitall

Bone marrow biopsy is the best way to irrefutably dx mastocytosis, it will not diagnose MCAD(S). During V's second scope I had the pathologist look for gut masto. The slides must be stained a certain way, and they must know what to look for.
The difference between these two are: mastocytosis is an overproduction of mast cells,  MCAD(S) is  mast cell activation disorder/syndrome in which a normal amt of mast cells are produced, but they "misbehave" and degranulate easily and with varying triggers.
Pruritis and flushing with OR without urticaria are both common in all forms of masto and MCAD.

Ask for a tryptase level, simple blood test and if elevated shall give you a starting point for further investigation.


----------



## Clash

Thanks!!! I'm going to push my GP to do that tomorrow.


----------



## Clash

So I thought I would drop in an update on C and me too I guess. C has been doing good. He seems to be sailing along but I do think the Remi nurses are going to be shocked by his weight. It is still rebounding from the flu and of course seems to be taking longer than I want it to. He is trying to drink smoothies with the Ensure/Boost but mostly he just gags it up, still a texture issue. 

I go to my local cardio EP tomorrow to go over all the tests performed while I was admitted in the hospital. He just changed my med again, so now I'm on nadolol. We'll see how this goes. I'm still scheduled for the Mayo in Jacksonville for the first part of Feb. I'm not sure if the trip is even necessary as I think the POTs is a defo but I would like to have tests run to try and discover type and rule out anything insidious as the cause.

Interestingly, enough while researching dysautonomia and POTs, I found that a lot of POTs patients are Vitamin D deficient, severe fatigue, vitamin B12 deficiency and have IBS or motility problems with the bowel including gastroparesis. It is so uncanny to read the stories of those with POTs and realize no matter the chronic illness it has such a profound impact on the sufferers' lives. So far, I have only faced this as the parent of a child with chronic illness as mine isn't as debilitating as those I have read about. Still, there is a process of coming to terms with it that I'm trying to wade through. I worry most about not being healthy when C is having a flare, I really hope this med gets me back on track. 

Hope everyone is doing well and things are looking up for this new year!


----------



## DustyKat

{HUGS} to you Clash. It surely is a lot to process and I hope more than anything that this new med is just the ticket for you. 

It is good to hear that C is going along fine and that he soon packs some meat onto those bones! Bless him. 

I also hope your fears about your own health and C’s never come to fruition Clash but regardless, your exceptional knowledge about this disease is something that your body can never take away from you so C will always have you in his corner. :heart: 

Sending mega loads of love, luck and healing thoughts your way! 

Dusty. xxx


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## Sascot

Good to hear C is doing fine. Good luck for your appointment, hope the new meds help.


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## Jmrogers4

Sending lots of hugs your way! Good luck with the appt and glad C is doing well and hope the weight bumps up quickly


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## Tesscorm

Just lots of hugs...  no advice but just thinking of you and hope you're feeling better soon! :ghug:


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## jmckinley

Wow Clash! (((HUGS!))) I am so sorry for all you have been going through with your health. I hope that you get some answers soon. It is very frustrating to not feel well yourself when you are already dealing with C's issues. That's a lot to deal with!

It's amazing to see how similar Ryan and C still are. Ryan had flu dx on December 20th...and he had the flu shot in October! But I suppose the mtx and Humira left us with no hope but to catch the flu. He is still tired and it is January! Glad to hear that C is drinking his shakes  and trying to bring that weight up. Man it's hard to put the weight on them!

Hope to hear that you have found some answers for your health soon! I will check back in on you!


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## kimmidwife

Glad to hear c is doing well. Sending hugs your way! Hopefully this new medicine works. I think it is worth it to keep the appt at Mayo. Sounds like a lot of people here have had such good experiences there.


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## Clash

Ok so C had his remicade today. All went well this stretch, no symptoms and he has been feeling great. 

So, I knew the nurses were going to be upset about his weight and sure enough, shortly after he went back the nurse came out and said that C's weight was concerning. The doc was in-service this week but she felt he needed to see doc and the nutritionist. She felt at this point, the doc may consider the nightly ng tube to see if we could get some nutrition into him. He was 112.5 and she wants him at 118 when he comes back to see nutritionist. Oh and if he loses anymore they may have to consider admission. They did his labs and I should get results in a day or two.


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## Jmrogers4

How's his appetite?  Is he still trying to gag down an Ensure/Boost.


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## my little penguin

What about the protein powder you can add to things??
Have you tried other versions carnation, Kellogg , slim fast etc???
Yes even slim fast will cause weight gain if taken with a normal diet .


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## xmdmom

Anything with calories can cause weight gain if it's absorbed and eaten in quantity.  What foods/drinks does he like and also tolerate?  

What's his height  and what's been the trend with his weight?  I'm wondering why the nurse was talking about an NG tube.


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## Clash

xmdmom, C's weight has been an issue off and on, his last hospital admission(Jan. 2013) was due to joint pain so they went ahead and did scope, MRE and FC. The GI was happy with his tests but he was suboptimal for weight so they wouldn't release him. We were there 7 extra days trying to get his weight up.

His last FC was his last remicade and it was normal. The GI and nurses have spoken to C about supplementing his diet with ensure/boost but he doesn't tolerate them, he doesn't like the texture so he gags them back up. We've tried everything, mixing with fruit and ice cream to make a shake, adding chocolate syrup, I truly believe it is a mental thing at this point.

He had been at 120, then 118, but this last stretch he got the flu(about 4 weeks ago now), he lost down to 109 but has gained back to 112.5 as of today. His appetite is great, our grocery bill is proof of that. He eats all the time and both he and I told the nurse this. Supplemental EN with NG tube has been discussed before that is why she brought it up. The nurse said she can't say for sure what steps the nutritionist will want us too take at the appt but if it about absorption then the elemental formulas via ng tube may be necessary. She told C to make sure he was eating high calorie meals and snacks and to try to really pack on weight, if by doing this he still doesn't put on weight by the appt, that will give them more info to work with.


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## crohnsinct

So frustrating!  I am assuming you told them about the flu bit right?  I mean isn't it a good sign he is gaining again?  Slow but gaining?  Any concern there is simmering inflammation that might be interfering?  I know FC test is usually pretty predictive with him as is his own accounting of how he feels and his appetite so maybe he just needs to find his magic food.  Aren't you from the south?  Can't you whip up some of those deep fried, calorie laden foods?  What kind of a southern girl are you? Shall I send you some lasagna and Italian pastries?


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## Clash

Yeah, I told her about the flu and all. This has been brewing from his previous GI appt. The GI just thinks he should be gaining more. I think personally, it is probably scar tissue and an inability to absorb. I mentioned this to the nurse and she nodded that his tests, appetite, and no symptoms do point to that. She was really taken back at the how hollow she said C looked. I knew C looked skinny but seeing him every day I guess I am not able to gauge how bad the weight loss has looked.

The nutritionist appt is first then a few weeks later the GI/remicade appt. She told C that the nutritionist would make recommendations to the GI and he would take them into consideration in what the next steps should be.

Today:
Banana when he woke up

McD breakfast combo otw to remicade

Cookies and chips at remicade

Shane's Rib Shack combo after appt(cleaned the plate)

snickers bar otw home drive

doughnut when he got home

plate of tater tot casserole when we got home(loaded with cheese, sourcream, butter, mushroom soup)

And he will probably eat again before bed.

CIC, anytime you want to send some of your Italian food my way, feel free...why don't you just bring it yourself along with some wine and we will just have us a sweet ol' time!


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## xmdmom

The weight gain from 109 to 112 is better than nothing but most healthy people who lose due to flu gain their weight right back.

Does C have any ideas about how he could gain more weight? Does he exercise?

I'm curious to know his height.

I wasn't clear if you were using boost/ensure in all of your smoothies.  I don't know about the texture of boost but I do know the smell (YUCK).  My son hate BOOST but it helps maintain his weight.  I've been making coconut milk/greek yogurt/ fruit smoothies for him too.


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## xmdmom

If he's not absorbing, I'd expect some gi symptoms.


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## Clash

His height is now 5'7" so he is under the 5th percentile.

He hasn't been exercising, but he does play around with friends at school basketball, football, Frisbee. Oh yeah his idea to gain weight is can he eat at the Japanese Restaurant once a day? He gets snack money to eat off campus during one of the junior breaks and he always chooses thai sushi, he said he was going to start doing milkshakes and other high calorie food instead.

He doesn't have any GI symptoms or any of his usual EIMs such as episcleritis, joint pain or the ulcers that show up with his flares. He does stay on the go, especially on the weekend but he and his friends are usually grilling out, or going out to eat so it doesn't seem that he is eating less then but he did say he was going to take the nurse up on the calorie app she sent him and track how much. I was doing this for awhile but his calories were almost always over 3000 a day for the last few months so I had stopped pestering him with it.


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## Clash

We make shakes and smoothies with and without the boost since the nurse has said pack whatever you make full of calories.

I feel like testing is probably going to be our next step. To see if we are dealing with simmering inflammation or scar tissue or what. But I guess the GI will be discussing all that. 

I told C the night before that the nurse was going to be concerned about his weight. Up until this point he has never been concerned about it but last night he said he was worried about it too. In the past, his usual answer is this must be what I'm supposed to weigh cause I am eating.

I guess we will just be waiting for all this to come together.

My Little Penguin, I'll look into the protein things. He eats protein bars, it was never really for the protein he just liked these certain ones that had chocolate and peanut butter.


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## crohnsinct

Has his thyroid been checked?  I can't say with certainty but I remember reading thyroid issues with either Crohns or Mtx.  

That hash brown casserole sounds amazing!  PM me the recipe...I wouldn't want it circulating on the open forum for fear we would be poisoning everyone.  

And girl!  Sitting a spell on your nice warm porch eating and drinking sounds divine right about now but I have plaster to rip out and water to sop up....trust me the wine is a flowin!


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## Jmrogers4

Beneful makes an unflavored protein powder easy to add to shakes, smoothies, pudding, etc and then he doesn't have to worry about taste. 
Tater Tot casserole sounds amazing


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## Clash

Thanks Jmrogers4, I'll see if I can find that next trip to the store.

Oh and he just fixed him a fried egg sandwich, I'm telling you guys, this kid eats constantly!


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## my little penguin

Are you using fitness pal app or the like to log a food diary .
We did this for DS 
It calculated how much fat carbs etc he was taken in and how much he needed to gain weight .
That was how we knew he had an issue when 2600 calories didn't cause him to gain weight at age 7.
We put butter under his peanut butter/jelly sandwiches, avacados,
Olive oil to cook with .
Milk shakes ice cream etc...

Hope you get answers soon.


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## Sascot

How frustrating when he seems to be eating so much.  Hope he manages to bring the weight up without the NG tube.  My son couldn't tolerate any of the supplemental drinks - he just gagged them up too.


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## DustyKat

Good to hear that all is hunky dory with C clinically.  

Weight: I know the benefits of being in a ‘healthier’ weight range so don’t bonk me over the head for saying this :lol: buuuuuut…

In view of the fact that he is starting to gain again following an acute illness, is doing well Crohn’s wise, is eating like the proverbial horse and has ileal Crohn’s with the likelihood of scarring…do you think there is too much emphasis on his weight? Does it bother C? 

Dusty. xxx


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## Clash

MLP I was just keeping up with calories with an excel sheet but the nurse gave C an app to use on his iPhone, not sure what it is.

Dusty, C hasn't really worried about his weight. His philosophy had previously been, if I'm eating and I don't gain then maybe that is where I'm supossed to be. But when he lost down to 109 I think that worriedhim because it was only a couple of lbs. more than what had kept him in the hospital last year. 

Before bed last night he said I'm not worried about the weight the nurse said with the ng tube for supplemental I didn't have to wear it if I spent the night off so I say bring it on. I'm hoping he will use this app and do his best to put on weight but I'm letting him take the lead he is 17 and the decisions and managing of care will fall to him soon enough.


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## DustyKat

I hope whatever he chooses it has the desired outcome, bless him. He sounds to be such a wonderful young man Clash.  

Dusty. xxx


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## Tesscorm

> Before bed last night he said I'm not worried about the weight the nurse said with the ng tube for supplemental I didn't have to wear it if I spent the night off so I say bring it on.


Sorry, not sure what you meant in your sentence above...  hmm, getting into the wine so soon??  or perhaps I haven't had enough coffee yet :rof:  In any case, I think you meant that he is willing to use the ng tube overnight??  If yes, I'd go for it asap, before he gains one or two pounds and decides he doesn't really need it.  With the ng tube, as the taste becomes a non-issue, you can get a fully elemental formula that will be easiest to digest and, hopefully, give him the most benefit.  S was C's age when he was on supplemental EN and he was taking in 1500 cal/night, 5 nights/week (so could accommodate sleepovers, etc.) and, even with these extra calories, S was eating a regular diet during the day!  I can't remember - has C ever used the ng tube where he was inserting/removing himself?


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## Clash

Sorry, I see I omitted all of the commas from that sentence, but yes he was fine with ng as long as he could still go on the weekend with out it, like, if there was something planned he wanted to do.

He has only had the ng tube to take in the stuff before an MRE.


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## Tesscorm

Then if he's willing!, doing the supplementation overnight might be the way to go.  Now that S is away at school, he drinks some Boost during the day but, prior to going away, even when I asked if he wanted to switch from using the ng tube to drinking shakes, he always said no because it was just easier to do it overnight.  If C doesn't have a problem with the insertion, it really can be a very simple and convenient way for him to get some extra nutrition.  (Make sure you request a small tube - S used 6Fr.)


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## Clash

He seemed really okay with the fact that ng tube may be the course of action. I guess the next hurdle would be insurance. I'm quite sure we couldn't afford it on our own. The fact that it would be supplemental worries me as that is what usually is not covered by insurance if I'm reading all the legaleeze correctly.


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## Jmrogers4

We were able to get supplemental covered at 80% till we met deductible they would have covered at 100% if it was through NG tube.  I think it was because it was medically necessary.  It had to be a majority of his nutrition/calories was coming from the drinks. (I think it was over 80%).  It took a lot of phone calls from me, the doctor, even the DME company for the correct codes.


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## Brian'sMom

Our insurance covered 75% for supplemental (drinking it) and 100% for thru the NG tube. The key code for insurance i think is "failure to thrive". Having trouble gaining and or keeping weight on falls into this dx


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## crohnsinct

I would at least go for it but as an ex benefits administrator I have seen insurance nix ng tube feeding many, many times so wouldn't be surprised. They even nixed it for a severely autistic boy who could not/would not eat food.  Doctor even wrote without it he would die...denied.  Idiots! 

That said, O had her drinks covered 100% so go for it.  

I would just wonder if he gets a good amount in him at night if he will still have an appetite during the day.  I see S did so hopefully C will to!  

Good luck...sending lots of gaining vibes your way!  How are you feeling?


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## xmdmom

The weight is low but not dangerously low and not at a percentile that an NG tube would be required-- (that's not to say that it couldn't be helpful)  It's the 4 th percentile for BMI for a 17 year old.  I think the biggest question is why he lost weight (other than the flu) and why he's gaining slowly now.  I don't understand the idea that scarred tissue  causes weight loss.  If there's a lot of scarring that causes malabsorption, wouldn't there be gi symptoms?  Or is there another mechanism that scarring could cause weight loss?


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## Clash

Not entirely sure on that one xmdmom, I've only spoken to the remicade nurse at the GI  office, not the GI nurse in detail.

The GI nurse called today with his lab results, his Vitamin D was low, she said by standards or something it wasn't terribly low but the GI likes to have them on the upper end not the lower end, it was 27. Also, he had another low, I was at an dr. appt. myself so I'm not sure what she said it was, only that it involved the liver and nutrients or something? It was at 17, ugghhh...I wish I could remember what she said it was, but ever since this POTs, I have such severe brain fog. I plan on calling back Monday with a notebook and some questions

We discussed what the remicade nurse had scheduled as the GI nurse was unaware(they were in a satellite ofc today). She said something about the weight loss not affecting this liver/nutrient number to the point that they would be alarmingly concerned but she was going to speak with the Remi nurse and make sure the GI was up to point on everything.

The ng tube may be premature, it was the remicade nurse and not the GI discussing it but it had been discussed before so maybe that was where she was coming from.


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## DustyKat

I think with ileal Crohn’s, when active, resected or scarred, the weight loss issue can become quite complex as it has the ability to affect the absorption of carbohydrates and lipids, so the most efficient way for the body to gain weight is hindered. Sometimes it can be this alone that is the pathway to difficulty in gaining weight but it can also be compounded as the malabsorption of fats leads to irritation and diarrhoea. 

Also bear in mind that once a carbohydrate and lipid absorption is present it will in turn affect the absorption of the fat soluble vitamins A,D,E and K. 

I can say at our end that both of my kids weights are stable but neither really has an ounce to spare. They can eat copious amounts of food and have little to show for it. 

Dusty. xxx


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## Clash

Thanks, DustyKat. C is feeling great and doing well with school. We've been packing the calories in but not much improvement. He gains two lbs then loses one, vicious circle type of thing. His sleep schedule is fairly messed up and I wonder if that is playing a role. I have discussed it with the GI before but I think I may push for a sleep study. C is not really on board with this but we are discussing it and I have explained the issues that could result so hopefully he won't balk too much.

My weeks are up and down as well, POTs sucks. Sometimes, I can do almost normal activity and other days I'm so fatigued from my morning shower I have to take a nap. I had a month of really good days and now it seems to come and go. I blacked out after my shower today but didn't completely pass out.

The underlying conditions I'm hoping to get tested for is MCAS, Ehlers Danlos, and another Lyme test. Just not sure when and where I am going for these tests.

Hope everyone is doing well, though I'm not on as much I think of you guys, often!


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## DustyKat

It is good to hear that C is doing well, albeit with its glitches. I hope you can find answers for your lad Clash. 
When it comes to routine in the general sense, I know that Matt in particular seems to me to be at his best and bouncy when he has the very structured routine he sets himself when at university. At these times his appetite is excellent, he has very good energy, his weight is stable and he is in a good place psychologically. 

{HUGS} to you Clash  I hope you find your own answers and are soon able to get on top of things. It is surely does suck! :voodoo: 

Dusty. xxx


----------



## my little penguin

Clash see my post link in Caitlyn journey on mcas slides
Next to last post


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## Clash

I looked at them earlier my little penguin. When I read about other people's experience with MCAS and POTs my symptoms don't fit so well. But I do feel a need to see if there is an underlying cause to my POTs, even though I know there is a possibility that it is just a post viral result.

I'm really interested in Lyme and the co infections. About two years ago I had what my GP thought was ehrlichiosis(tick borne illness) I was treated with doxy for a month. the antibody titers came back negative yet the doc said that didn't mean that I didn't have it because it can take some time for the body to show antibodies. Anyway, I wonder about this now but the whole Lyme and its Co infections seems fairly controversial and I really don't know what to believe and what not to believe.


----------



## Tesscorm

Uggh, Clash I'm just sorry you're dealing with this.   I know nothing about MCAS, POTS, etc. so no advice at all...  just wishes you start getting many more good days! :ghug:


----------



## Clash

I appreciate it Tesscorm!


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## kimmidwife

Lyme,
 That is interesting. We spend summers in a place with a lot of ticks. Maybe I should have Caitlyn tested.


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## Clash

There is apparently this big discrepancy between what the CDC requires for a Lyme positive and what some docs believe and also other countries. You can google it. I'm just not sure who is right or what is to be believed. I do know the Lyme literate docs feel you should get the western blot and not look at overall pos or neg but what Lyme and co infection strands are pos. So confusing. Most labs don't do in depth testing, Igenix is supposed to have the most in depth.


----------



## DustyKat

Are you still around Dan (D Bergy)??

Dan’s wife had Lyme disease and he is a wealth of knowledge on the subject Clash. Hoping he sees this and chimes in. 

Dusty. xxx


----------



## Clash

Well we just left the nutritionist appt. I think it went well. She wants C to up his calories per day since he doesnt eat as well when on the go with friends on the weekend. She gave us samples of different formulas and told us to mull over ng tube. C actually brought it up and she was all excited about it and the fact we knew its advantages. So he can go with the calorie increase thing and think about the ng and if he decides on it then we just call and she'll set it all up.

So, another bit of news. My Mom is also on Remi and MTX but for RA. She has been on it a year longer than C with Remi and two years with MTX. Six months ago she had a sore on her leg that wouldn't heal. She has been going to the derm and he's kept an eye on it. He finally decided to biopsy two weeks ago. He said it being located in her shin he had wanted to see if they could just get it healed because it takes longer in that area or something like that. I don't know why it never crossed my mind, her being on Remi it could be something more serious or why her derm didn't know. Anyway, they called yesterday and it is squamous cell cancer. I told her to call her RA doc right away since she has a Remi coming up. The RA doc is supposed to be calling the derm to discuss it. How many times have I read the risk statement discussing the risk of non melanoma cancers in particular SCC and it never cross my mind! Sheesh.

Hope all is well with everyone!


----------



## crohnsinct

UGH!  Every correspondence I get from the makes of Remicade they include their mouse type 4 page documents of warning etc.  At first it scared me...isn't once enough?  Now I just toss them.  Shows how complacent we can get eh? 

I hope they caught this quick enough and that it doesn't cause to many difficulties.  Weird that her derm didn't think of it also especially given Remicade is a drug derms use often for psoriasis.  He should be familiar with the warnings.


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## Clash

CIC I thought the same thing about the derm, he should know and I'm sure she had to tell him all her meds. Now I doubt she had mentioned it to the RA doc because she didn't know the connection until I told her. She pays no attention to side effects/risk papers.

The PA is the one that called with the results and she said it was shallow and there may be some chemo involved but the derm would go over it all at the appt.

We get the papers each time as well.


----------



## Clash

C ate way over the extra cals the nutritionist recommended yesterday! Ha. We have the samples chilling in the fridge of the different formulas. The nutritionist and the GIs had been to a conference with the CHOP IBD docs. The nutritionist gave me a printout of the protocol for other countries and the protocol CHOP is using with initial and maintenance formulas.

Interestingly, the CHOP docs at the conference said they had done studies assuming that the elemental and more broken down formulas would produce better results but in their studies and others there has been no difference for remission induction or maintenance supplement between the different types of formulas.

One of the formulas the nutritionist sent home with us was one I had not heard of. She said they had a few on the peptide 1.5(the one I've seen MLP mention) but with her teenage boy patients she has been using a more dense calorie formula(or something to that effect) that is 2.0 cals(I don't have the notes in front of me so I my explanation may be a little off) and the samples she gave were Twocal HN. Anyone heard of that one?


----------



## Sascot

Not heard of that formula, hope C can put up with one of them so you don't have to worry about the tube. So sorry to hear about your mom.


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## Clash

I'm also wondering about that, Sascot. I do remember a post on here about how expensive the formulas are if the ins. doesn't cover them. The nutritionist said she would help any way she could, in her experience if they are taken orally the insurance would not cover them.

A lot of the info was a little confusing to me. Like the difference between the protocol and the induction and maintenance plans. The CHOP one said something about 80%-90% 5 days a week for maintenance. I'm not sure how that relates to coverage and what not if you use a tube. 

I'm having a potsie morning so I'm stuck in the bed right now but when I get can some mobility going I will go down and get the typed up paper and post it.


----------



## Tesscorm

Sorry about your mom...  you have enough concerns as it is!!  I hope it's easily treated. :ghug:

Confused/curious about something re your insurance...  it seems the insurance will cover the formula if a tube is used, so...  if it's the same formula, can't you just get the tube and not use it?  :lol:  I'm sure I'm missing something... :ybatty:

Interesting about the different formulas...  S is on Boost and, while I thought that was better than nothing, I also thought it probably wasn't doing as much good as the elemental.  Reassuring to know that may not be the case.  

Don't be too put off by the tube, until S went away (and had roommates, etc.), he definitely preferred the convenience of using the tube.  Not saying he didn't grumble at having to put it in, etc. but, we're talking 10 seconds! - takes longer to brush his teeth (I hope!)

I think I've brainwashed S into believing the shakes are the end all of all IBD treatments!  :lol:  He had his wisdom teeth removed on Tuesday and has recovered quite well (very little swelling and very tolerable level of pain).  Since then, for the most part, he's eaten only broth with rice and chicken and about 3-4 shakes per day.  Last night he told me he believes he's recovered so well because he's used the shakes as his main nutrition so has given his body nutrients and allowed the gums to heal without the irritation of food.   Right or wrong, if it keeps him on with the shakes, I'm good. :lol:


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## my little penguin

As far as coverage most plans do not cover formula per say...
But cover infusion supplies which formula is when received from a durable medical equipment place.
It also depends on the dx code etc....
DS started formula prior to dx due to FTT .
The more dense formula can sometimes be harder on the gut , more expensive etc...
But you need to drink less volume.
DS just drinks peptamen jr.

You can add Hershey syrup
Maple syrup 
Or fresh fruit to help with taste 
Make a smoothie out of them
Pumpkin
Banana 
Fruit of choice 
Formula

Good luck


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## Jmrogers4

Went rounds with the insurance company on the shakes and finally got them covered after deductible as he was receiving over 90% of calories/nutrition from them.  I had the whole NG tube thing and it wasn't until the 3rd time calling and talking to a different person each time that the last one got it and it was the same as an NG tube he was just taking it orally, although we were at the point and his GI's office was on board of prescribing an NG tube and just not using it.
Haven't heard of that one, Jack found the 1.5 very thick.  He said it was like drinking pudding, I wonder what the consistency of a 2.0 would be?
I agree with Tess whatever keeps them on the shakes is a good thing


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## Clash

Tesscorm, C thinks he would prefer the tube to the drinks. He is going to try drinking these samples but he has a real issue with the texture. Nothing we have done has been able to stop his gag reflex on this. I think now it is in his head and he can't get over it. The formulas are chilling now so we will see. I think if the nutritionist had said, off the bat, that he was going to be on ng tube, he would've been on board as he is the one that brought up EN and NG tube. C also mentioned a Mom I knew whose son did the NG overnight and stayed of meds for a year or more, haha your S! He does listen to my stories! The nutritionist wanted to know all about your experience and where you were from and how long that had been the first line of defense in your area, what type of formula and if he was still on maintenance!

I understand that "end all treatment of EN mentality", the CHOP conference apparently had the same effect on the docs and nutritionist at C's GI. She was all excited that the advantages of no meds and no side effects was such great thing. Now, I didn't go in depth with her about it because every time I started to I would get the eye roll from C but I am assuming she meant no meds as far as steroids for induction of remission, although she never clarified that. Even C mentioned, on the way home, if she thought a continuous maintenance would stave off meds.

C's biggest problem seems to be that when he is away with friends on the weekend he is not taking in enough calories. She said his week day diet was up to par going over his journal but that he was lacking on the weekend from being on the go. She told him at his age it was up to him to ensure he was taking control of his health. I think this did empower him.


----------



## Tesscorm

When S did the supplemental through NG, he did it only 5 nights per week (so, for the most part, not on Friday or Saturday night) so that would work with C's weekend plans! 

FYI, Stephen's formula was elemental and was called Tolerex (I don't think I've ever seen anyone else mention it here??), it's made by Nestle.  And, we were told by nutritionist to condense it... so, I think it was 150 ml water per package (package instructions were 200 or 250 ml of water per pkg).  Once it was all mixed, it was 1000 ml (1500 calories).


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## Clash

I gave her the name of Stephen's formula but I couldn't remember the condensing measurements you used. She was really interested. She was saying about the same about the condensed formula she gave C. I have it written out by her I think, or maybe that was just the different percentages with different formulas.

I want to post the paper info she gave me and see what the committee says as we all know how much the committee info should be valued and the nutritionist may learn something as well! Ha! As soon as I can get moving I will move that way and get the paper. I no longer need the wine to take me away, the POTs does a fabulous job of giving me the tipsy, dizzy, feeling!! Unfortunately, it doesn't produce Fireman on poles or any of our go to entertainment! Ha!


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## Maya142

My daughter tried Peptamen 1.5 and it was very thick and completely disgusting. It was even worse than Peptamen jr (we both tried both!). Even flavoring it didn't help. We were told that if you're really looking to add calories an NG tube is best because the formulas with more calories are hard to drink.
It's really great that your son is on board with the NG tube. I think I'll use this story to try and convince my daughter (Tesscorm, I've already told her all about Stephen!)


----------



## Tesscorm

Clash - S was started on EEN at Hospital for Sick Children (Toronto), I remember his IBD dietitien saying she often had calls from other dietitiens re EEN as it wasn't commonly used and they weren't well educated on the process.  S's dietitien left the hospital just before S left so I don't know have a name of the new dietitien.   Also, the head of the IBD dept was involved in studies, reports, etc. on EEN, C's dietitien may find some info related to her name - Dr. Anne Griffiths - this is one article I found.

http://journals.lww.com/jpgn/Fullte...trition__The_Neglected_Primary_Therapy.3.aspx

Maya142 - if S's experience with EEN/EN can encourage any child to give it a shot, I think that's great!


----------



## Clash

Here is some of the info that the nutritionist is giving patients from the conference they attended with/at whatever CHOP.

*What are the benefits of using enteral nutrition in Crohn's Disease?*
Enteral nutrition as been shown to induce remission, restore growth(weight and height) and spare corticosteroid use in children with Crohn's Disease. Therapeutic efficacy is 50%-75% in children.

*Compared to Steroids*
remission at 8 weeks
Enteral Diet = 50-79%
Steroids = 67-100%

Maintenance of remission at 0.3-2.5 yr follow-up
Enteral Diet = 80%
Steroids = 44%

Mucosal healing
Enteral Diet = 74%
Steroids = 33%

*European Protocol*
1. Induction: Exclusive EN x 4-12 weeks
2. Maintenance: (either)
a. Repeat 4 week cycle of exclusive enteral nutrition every 3-4 months
b. Medical therapy

*CHOP Protocol*
1. Induction: 80-90% of patient's caloric needs met using semi-elemental formula + normal diet as tolerated during the day. Continue x 8-12 weeks.
2. Maintenance: Enteral feeds 5 days\week

The rest of the info was info she wrote down for C to consider when deciding if he wanted to do EN. It was just how many cans of the 1.0, 1.5 or 2.0 he would need to meet 80% and 90%

Thanks Tesscorm, I am supposed to stay in email contact with the nutritionist about C's journal and if he is reaching what she has recommended so I will give her the info you posted as well.


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## Clash

So since the appt C has been meeting calorie goal through food and the shakes haven't come into play at all. Today after lunch, he came upstairs to tell me the pasta and chicken was good and for good measure he downed one of the two cal HN shakes. I would've thought these would have been the nastier tasting of the samples he had but he said other than being really thick it wasn't bad. After supper he drank one of the others we were given. I'm really surprised, he said the second one had the texture he doeant like and made him a little queasy but he got through it.


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## Tesscorm

Can you dilute the 'thick' shake a bit with milk or water?  I know it'll add volume but maybe it'll be easier to drink??  And then, maybe, he can have some as his drink with a meal???  I also buy S the Boost fruit beverages - he says they're good and taste like normal juice so he often just has one as his drink with lunch or dinner.  I think they're a bit lower in calories and proteins compared to the shakes but, they're better for him than just a glass of regular juice.


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## Clash

The thick one isn't that much maybe four ounces? So no big deal to just down one of them if he hasn't met his calorie goal. I mentioned mixing it but he didn't want to be bothered. He has said he is going to follow the calorie goal and if there is no progress in weight gain he wants to make a decision about the ng tube within month. He has GI appt then Remi right after next week. The nutritionist said she was going to pop in to check his weight and give her opinion on where he is at and what she feels the next steps should be. I guess I need to be checking into our ins policy and what they will and will not cover as far as EN.

I am really trying to allow him to find his way and make his decisions about this. I know we are getting short on time of him being at home and having me in control. I would really like for him to "see" the cause and effect of his decisions preferably for the good but even it is for the bad then I guess there is a lesson in that as well.


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## Clash

Oops sorry C corrected me, the thick one is 8 ounces.


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## imaboveitall

Clash PM me if you want Violet's Facebook, he can friend her and maybe a pretty teen girl who uses a tube can convince him it's doable.
Also tell him about Starbright World, site for chronically ill teens (V's on there too).


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## Jmrogers4

LOL imaboveitall.  A pretty teen girl can get most teen boys to do just about anything.


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## Clash

He's on board with the NG tube says he'd rather do that than have to drink the shakes. At the appt he'd have rather done ng than add the calories through food but since his gi appt was only two weeks away and I needed to look into ins coverage we decided on the added calories per day along with sampling the different formulas to determine what hr wants to go forward with. He said he wasn't interested in sampling because he wouldn't taste them through the tube that is why it surprised me when he drank them. 

I will tell him about starbright and mention V, I'll pm you if he isn't to shy and interested.


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## Clash

So it has been over a year since C has woke me up to say he has a stomach ache, but he just did. He asked for a levsin. I didn't press him on what kind of ache, does it feel crohnsy, yada yada yada but instead told him to wake me again if he needed me(like I'll be sleeping). 

It's probably nothing, there is a bug going around yet it is insane how those words can strike fear in your heart.


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## Clash

Things have not improved. The pain is in his lrq and extends to the left a bit to under his belly button. He feels like it is CD related. No bm today and he can't remember if he went yesterday but knows it was no longer than Tues. since last bm and bms have been a little loose but not concerning to him. He explains the pain as if someone was squeezing something inside and that it is fairly consistently painful but intensity waxes and wanes. The levsin did nothing.

I have put a call into GI and left a message with pretty much what I stated above. Waiting for a call back.

I'm not sure what to offer him as I don't know what we are dealing with. I got the heating pads going and he ate a bit of cereal this morning but said his appetite is wonky. Any tips on relief?


----------



## Clash

C is still in pain. The GI has moved his Remicade up to Monday along with GI visit. I'm just trying to keep him comfortable until then if dehydration starts or heavy bleeding then call the in call GI and probably head up to CHOA.

He did have one bowel movement while I was back and forth on the phone with Gi, it was fairly normal bm. Since then he has gone 4 more times. The first 3 of those were weird, they were soft, formed and flat like ribbons. The final was mostly mucus and liquid.

I guess I knew this might be coming since we have had the weight problem but still pissed he is in pain and I can't do anything for him. I just want this weekend to fly by


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## Tesscorm

Uggh, so sorry Clash!!  I have no suggestions for the pain, other than if he does get hungry, keep the meals small...  if it's a shake, I'd just give him a little at a time.  I hope the pain lessens between now and Monday. :ghug: :ghug:


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## DustyKat

Oh Clash. :ghug: 

Since you are already using heat packs the only other things I can offer up is a warm bath and some diversionary things like music and gentle massage, not necessarily on the affected area but his back and feet and legs. 

Thinking of you. :heart: 

Dusty. xxx


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## Clash

Thanks Dusty and tesscorm, he tried the bath and diversionary tactics. I will have to try the massage.

He is angry that he is back here again and I fear a fair bit afraid. He hasn't said so to me but has talked to his sis through text. He did tell me that he wished they would admit him and run tests because he wants them to see it while it is going on. He thinks it is bad. His appetite is still there but he thinks he may start with shakes tomorrow and see if it helps with pain. He had one tonight to see if it was another he could stomach so we could pick up some variety. I've explained that EEN may very well help with the pain but the decision was his. 

He's trying to sleep now and I really just want to throw things and fling cuss words at the wind, possibly some primal screams for good measure. Rationally, I know the wax and wane of this illness is to be expected but damn the rough times just seem to knock me off balance.

I told him last night before the pain that his episcleritis looked as if it were flaring he blew it off and laughed saying I was looking for trouble. Today, he told me I called it but he thought no joint pain, no mouth ulcers no problems. Ughh.. hope everyone has a good night! Thanks for letting me vent!


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## DustyKat

Oh Clash…my heart goes out to you!… 

I feel your pain and despair. :ghug: 

:hang: 

Dusty. xxx


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## Tesscorm

I'm so sorry Clash...  I can only imagine how frustrating it is for you and C to feel that you are back to this again!! :ghug: :ghug:  Maybe over the weekend, a quasi-EEN diet may help...  ie shakes mainly but with some broth w/noodles, scrambled eggs, pasta with butter, yoghurts/puddings, jello, etc. (can't remember if dairy is a problem for him??).  Papaya is supposed to be anti-inflammatory, perhaps some 'cool' anti-inflammatory foods (off hand, not sure what else to suggest) might help 'cool down' any inflammation???

I feel so sorry that he's feeling frustrated and frightened, it's so unfair when these kids do all they're told and keep finding themselves slipping back!  I wish I had some advice that could help him now.

This is just FYI (wouldn't be a quick fix today) but I recently posted some info re crohns relapses and fish oil supplements - copied it below.  I've given Stephen krill oil supplements since he was diagnosed.  He takes 1000 mg per day.  This is the brand S has always used (although I just did buy a new brand...  only because it was convenient at the moment.)

http://www.nowfoods.com/Neptune-Krill-Oil-60-softgels.htm

FYI, if this is something you want to try...  this brand comes in 500mg or 1000 mg capsules.  Initially S found that taking 1000mg at once caused looser stools (although this was also closely following his diagnosis..), so he went to one 500mg capsule first, once a day, then increased to twice a day (morning and night) - he handled this better.


Effect of an Enteric-Coated Fish-Oil Preparation on Relapses in Crohn's Disease

Background
Patients with Crohn's disease may have periods of remission, interrupted by relapses. Because fish oil has antiinflammatory actions, it could reduce the frequency of relapses, but it is often poorly tolerated because of its unpleasant taste and gastrointestinal side effects.

Methods
We performed a one-year, double-blind, placebo-controlled study to investigate the effects of a new fish-oil preparation in the maintenance of remission in 78 patients with Crohn's disease who had a high risk of relapse. The patients received either nine fish-oil capsules containing a total of 2.7 g of n-3 fatty acids or nine placebo capsules daily. A special coating protected the capsules against gastric acidity for at least 30 minutes.

Results
Among the 39 patients in the fish-oil group, 11 (28 percent) had relapses, 4 dropped out because of diarrhea, and 1 withdrew for other reasons. In contrast, among the 39 patients in the placebo group, 27 (69 percent) had relapses, 1 dropped out because of diarrhea, and 1 withdrew for other reasons (difference in relapse rate, 41 percentage points; 95 percent confidence interval, 21 to 61; P<0.001). After one year, 23 patients (59 percent) in the fish-oil group remained in remission, as compared with 10 (26 percent) in the placebo group (P = 0.003). Logistic-regression analysis indicated that only fish oil and not sex, age, previous surgery, duration of disease, or smoking status affected the likelihood of relapse (odds ratio for the placebo group as compared with the fish-oil group, 4.2; 95 percent confidence interval, 1.6 to 10.7).

Conclusions
In patients with Crohn's disease in remission, a novel enteric-coated fish-oil preparation is effective in reducing the rate of relapse. 

http://www.nejm.org/doi/full/10.1056/NEJM199606133342401


Still hoping his pain subsides over the weekend! :ghug:


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## Jmrogers4

Sorry no more advice, just loads of hugs.  The shakes really helped Jack's pain at the beginning of his last flare as long as he did not drink them too fast.


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## Sascot

Poor boy. Hope the weekend goes by quickly for you both. Good luck for Monday.


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## Clash

He hasn't complained as much today but he hasn't gotten out of bed and is still mostly sleeping. He said the pain was rough overnight so I'm hoping it is just from that. Although, U remember all to well the all day/all night times spent in bed fatigued and asleep. Thanks for the support.

jmrogers4, C says the same, he has to drink them slowly.


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## Mehita

Has he been prone to strictures in the past? 

I hope the liquid diet helps. Poor kid


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## Brian'sMom

So sorry to hear he's in pain and not feeling well. I hope things turn back around soon


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## Clash

Mehita, no he hasn't had strictures. I've been wondering about it though and I am going to mention it to the GI.
He says it is tender and sore in the area of his TI. His joints are really starting to bother him now, too. 

He got the sweetest text from his proxy(teacher that handles his school work when he has to do full indepent study). I was so appreciative of her words and it really lifted his spirits.

His bms are mostly D now. He hasn't been as often today. I've been pushing liquids and he has been drinking the shakes.

I really hope the infusion turns this around but I am also concerned that it isn't working like it used to.


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## araceli

I really hope he feels better soon. Sending hugs and support your way.


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## Clash

C's MTX dose was Thursday. I'm hoping for a little bit of rebound from it. The pain has lessened some in his abdomen, still tender to the touch and he complains it is sore. He's concerned that there has been no bm today, he said he felt the urge this morning but it passed before reaching the bathroom and now he feels as if he can't go. The joint pain is still bad, knees, ankles and lower back. He is drinking shakes. He keeps thinking he has a fever but it hasn't shown up on the thermometer.

Also, I felt sick, feverish last few days but no fever. Hubby then caught it from me with fever. Today was my daughter's 21st birthday and she wanted us to drive up to university and take her out for lunch...and we did still sick...so if yall here of some viral outbreak in Georgia...you'll know. Fortunately, no fevers and we chose to pick up full spread and picnic. J enjoyed it although her motives weren't completely pure she was after her b-day money. C was disappointed not to go but my Mom sat with him.


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## Clash

We are headed to the GI in just a bit. The pain is still there, joints are bad. He is bloated and and this will be the 3rd day of no bm. I tried to get him to take miralax but he was having none of it. He is scared it will make the pain worse. I'm hoping the GI can explain the prep vs a normal dose in a way that he will accept. He swears even the daily dose has made him cramp. 

He has been taking fluid and also shakes. But since yesterday his urine has been cloudy, any ideas here as to what that means or if it is concerning? He was a bit dizzy standing yesterday.

We've packed overnight bags just in case. Wish us luck, all goes well and they can get him feeling better.


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## Tesscorm

So, so sorry Clash!!!  Sending lots of wishes that it can be cleared up quickly and that he won't need to be admitted. 

Will be thinking of you... :ghug:


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## Clash

He has been adamant that he should be admitted for the last few days. He is convinced he needs testing. I really think that it has hit him hard that this is chronic since he has felt so good for so long then got knocked for a loop. I think right now the hospital represents a place of safety and that is part of his wanting to be there. I dont think he meets any criteria to be admitted and I've told him to just keep an open mind with the GI.

He just went back for his Remi and they are going to walk him down the hall to the GI appt in about 45 minutes.


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## araceli

I hope Remi makes him feel a lot better. Sending hugs.


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## Tesscorm

How are things going?


----------



## blessedby3miracles

Hi Clash,
Drew is home today and this weekend it seemed the Remicade stopped working it seems to be this way when we are ready for our next treatment. Then he gets the Remicade and he eats like a horse and acts great, but it wears off. We are due for Remicade on Wed but I called the Dr. because Drew is feeling so sluggish and not barley eating. I'm wondering what this means? He went off of Methotrexate a couple months ago but it must have done something because this is the worst he has been in a long time. How is your son doing now?


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## xmdmom

Cloudy urine can be dehydration or infection or sometimes crystals, or proteins.  Dizziness could be dehydration.

Really sorry to hear he's feeling ill.  Sending healing thoughts his way.


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## blessedby3miracles

Oh no I just read I will pray that he feels better really soon ):


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## Clash

Tesscorm, we are at the hospital. The GI decided he wanted a CT, he was initially going to do an MRE but wanted to see some things outside the bowel and in the lower pelvic area so C is drinking the contrast right now. Depending on the results, we will either be headed home or admitted.

The remicade went well and the GI feels that it will probably quickly improve his status but said that was only half the problem since he is not gaining weight or height appropriately. I guess we will have a follow-up to determine what the next steps should be.

blessedby3miracles, C has had this issue before with symptoms starting to return right before the remicade. C also came off MTX for a short time this summer but symptoms returned so we added it back at a lower dose. 

The GI said that C tends to always be sicker than labs would indicate, except FC test results. I really don't know what the future holds for the remicade and C but we will see.


----------



## Tesscorm

I hope the CT is able to give his GI a better idea of what is going on.  Whether you stay or not, I hope C begins to feel better now that he's had his infusion. :ghug:  (I hope you're feeling okay as well...  not easy for you to be staying either! :ghug


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## Clash

Thanks, Tesscorm. Honestly, we were with the GI for over an hour and it is a complete blur. C did alot of the talking because he was determined to get the GI to understand how bad he felt. The GI didn't need convincing as it is apparent in his appearance and demeanor. 

He just finished the CT. Now we are waiting for the Radiologist to read it and write report then the tech said she would print the report and call C's GI and go over it with him.


----------



## my little penguin

Hope the ct sheds some light on how to move forward for him.


----------



## Clash

Oh but I do want to add that although C was telling how bad he felt when it came time to press on the tummy, the GI told him not to be the martyr. Although C has been guarding that area with his arm for days and will let me see the pain from pressing when the GI did so he tensed a bit but it was like he was holding back. What is up with that? Teenage boys.


----------



## Farmwife

It's not just teenage boys, Grace is the same way with her sore joints.:yfaint:

I hope the ct scan helps ease minds or shows the problem.
Please remember to take care of yourself also.

Hugs


----------



## Maya142

M does that too with her joints, in fact her rheumatologist always teases her and says she's like a teenage boy!
Hope they figure out what to do for C soon!


----------



## Clash

We just left the hoapital. The GI read the report and called in to say he didn't feel we needed to be admitted but he wants to go over the images himself and will be calling us tomorrow. So now for the long drive home. Thanks everyone for the support.


----------



## Clash

GI nurse just called, the doc wanted me to know the scan showed a long segment of narrowing in the distal ileum. He had bloodwork done on C yesterday and he wants to see the results but e also wants to take some time go through all of C's testing through the last two years and come up with a plan. He is in another office today but will be calling tomorrow or the next day. He has mentioned surgery twice. I'm so crushed.


----------



## Tesscorm

I suppose he didn't mention if the narrowing is caused by scarring or inflammation???

I hope he is able to determine that it is, in fact, inflammation and a different threatment method is worth trying before surgery... :ghug:


----------



## Clash

Tesscorm, the GI nurse said it was inflammation. I know that the doc just had her call to give a bit of an update since we were at the hospital so late and only got the decision of no need to admit without discussion of results. I'm hoping for a lot more info in the next few days.

C is supposed to start miralax today since no bm. C has extreme trepidation about this so might be a rough day. He is still sleeping now.

It is so weird even at the hospital you could tell C was feeling better, his demeanor radiated that. Both Hubs and I picked up on it, just more movement and alertness. This was only hours after Remicade. One of the parents at Remi was saying the same thing, different child only hours after treatment. It has always been this way with C, although usually it is a small downward trend to a huge up tick, this time the full flare may change that.


----------



## Maya142

Clash, if it helps, you could tell him my daughter was also really afraid of starting miralax since she used it for her colonoscopy prep, but with a single dose she doesn't have diarrhea, just loose stools. No stomach cramping or anything.

I really hope they are able to come up with something to help him. Wouldn't prednisone help if it is inflammation?


----------



## my little penguin

DS uses it daily without cramping provided we don't give too much.
A steady rate produces more results that a large amount at once .
Just expect it will take time ( days ).
If its inflammation would another drug help to keep it down ???
Good luck with this


----------



## Clash

my little penguin, before the scan the GI was discussing what ifs. He said that he felt the Remicade yesterday would give Chase some symptom improvement but it was obvious it wasn't working at this stage because C keeps having blips(even if there was a long time between symptom flares) and there wasn't normal weight gain. Admittedly, I blanked out at this point because it just threw me. I know he was saying things about the other biologics and it seemed to not be positive but when I finally zoned back in he was saying "or the sister drug vedolzumab"(sp?). 

I know he is concerned about the length of time C has been vascillating between no symptoms and symptoms. I said something about clinical remission and he said C wasn't even there that some docs may say he was in lab remission but he doesn't subscribe to that because he just feels C's labs aren't an indicator of how sick he is. That is one of the reasons he wanted to compare scan to blood results to identify any trends we may be missing.

Maya142, pred did not work for C, he has only been on it once while waiting from dx by adult GI to appt with ped GI.(6-8weeks in all) there was no improvement in symptoms but all the horrible side effects.

He is still sleeping, he has done the miralax before for constipation and swears it made him cramp but since it was during a miniflare I think it was the CD not the lax. Now, I just have to convince him.


----------



## Tesscorm

I hope his GI can give you some solid suggestions soon!  I don't often see much discussion of the use of flagyl but it really helped Stephen!!  When S was diagnosed, he was inpatient.  Upon admission, they were already strongly suspecting crohns and, I think, even while still running tests were already treating for a crohns flare.  They started him on flagyl through IV right away.  Between May 16 to 23, his CRP went from 136 to 3.6 and his ESR went from 63 to 43 (even though I know ESR is supposed to take a long time to move?!?!?).  I think Flagyl played a big part in pushing S towards remission because it was at this point that he started EEN and then he did not continue with any flagyl once he was discharged on May 23.

IDK if this is helpful at all with C but, I just don't see flagyl used in this way very often???


----------



## DanceMom

A has had several rounds of Flagyl as well, and not for c-diff.  Her labs don't show inflammation (although fecal calp does) so I can't really gauge it's effectiveness numerically.  However, it does help to either stop her diarrhea or at least slow it down (3 times a day instead of 6....).  It has always been at least somewhat beneficial for A.

Maybe something worth trying before surgery?


----------



## Clash

I will bring up flagyl to the doc. Does anyone know how it compares with other antibiotics? Specifically, those like bactrim? He has a reaction of severe D to bactrim and the docs said it would be wise to avoid that "family" or something like that. So are those similar or anything?


----------



## Sascot

Hope the GI comes up with a good plan. Not sure about the Flagyl antibiotic "family". The only thing our GI said about Flagyl was that it was anti-inflammatory as well. It's never caused any side effects for My son.


----------



## Farmwife

Grace did flagyl when dx with c diff and it helped EVERYTHING for awhile. Of course we were still hoping it was the c diff causing all of her problems but interesting now that y'all bring it up.


----------



## Tesscorm

Sorry, I don't know either about the type of antibiotic.


----------



## Clash

Thanks for the input guys! I'll discuss it with the GI!


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## Tesscorm

The committee has spoken!  (I think we need some sort of 'stamp of approval' smiley...)

 

Good luck!!  Hope C continues to see improvement now that he's had his infusion! :ghug:


----------



## Clash

Yay committee agreement! He slept most of the day today. He says that his joints are hurting. He drank the miralax then 5 minutes later had a bm so the miralax was probably for nothing. He is trying to do some work now.

I worry about moving to another med. If Remicade is out then I'm concerned we may move to another biologic and it not work then face surgery leaving only one biologic afterward that is approved now. The GI said it was really good that C had no colon involvement and that made his candidacy for surgery more optimistic. I know surgery is seen as a last resort but I do wonder if we could start with a clean slate for the next med if surgery was employed. Souch to consider and so hard to know what to do.


----------



## my little penguin

my two cents - so going to hide 
but Flaygl may help with the inflammation but can't be used long term and it "seems "
that remi was not enough to keep the inflammation at bay so you would still need another maintenance med.
AS far as leaving remi for another biologic and running out of options.
I have run that circle too many times.
But if remi is not getting it done then you are taking all the risk of remi but none of the benefits.
The drug options are what they are at this point and what may work is never really known for anyone.
so you hope and pray the drugs work and stay that way forever or until something better gets approved.
At least that is how I sleep at night.
Granted C is older so in theory more options open up at 18 since docs are less willing to give un approved drugs to little ones.

never an easy decision.
hope the gi has a good plan and can talk you through it.


----------



## Clash

my little penguin, I agree Remicade isnt getting it done and I can deal with moving on but if the options are surgery then another biologic or try biologic and if it fails then surgery or yet another biologic then I wonder if surgery then a biologic might be the better option rather than running through all the big guns to no avail.


----------



## Maya142

I regularly worry about my daughters running out of biologics! When we were at CHOP for a second opinion last year, the dr pointed us to a powerpoint that they showed on the IBD Education day. 
I'm attaching the link here, it shows all the drugs in the pipeline! Hopefully, it'll help you sleep easier at night whatever you choose, I know it helped me!
http://www.chop.edu/export/download...er/IBD_Day_2013_Whats_Hot_in_IBD_Research.pdf


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## Clash

Ok that is just awesome! Thank you so much Maya142!


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## HelenMelb

Clash said:


> I will bring up flagyl to the doc. Does anyone know how it compares with other antibiotics? Specifically, those like bactrim? He has a reaction of severe D to bactrim and the docs said it would be wise to avoid that "family" or something like that. So are those similar or anything?


A close family member was looking at surgery for severe crohns and a flare that lasted the best part of a year. Flagyl and Cipro were reluctantly offered with the line "it won't help your crohns, but may help some symptoms". Well, that doc needs to go back to medical school. Recent scopes show remarkable and unexpected improvement. We are thrilled and hope it continues. You can actually be on antibiotics for a long time, and "pulse" on and off. I believe one poster on this forum has used the Flagyl/Cipro combo for over 8 years to maintain remission.

Wishing your boy a rapid recovery.


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## Clash

Grrr...we are in a holding pattern with regular updates to GI. If there is not a turn around then we will be talking with the surgeon. C has improved, stomach pain is gone, joint pain still lingers. We should he getting EN started next week to help out. There will be a fecal calprotectin in four weeks. Appetite is good, bms back to normal, still has screwed up sleep schedule and more sleep than normal I feel hut since he is having trouble getting to sleep it throws everything off. Still not sure if this is CD related, or patter disturbance or what. GI feels it is due to the CD.

Thanks everyone forvthe support I just feel we are always in a panic/wait state and the waiting is so hard.I feel even if symptoms are relieved that the disease may be silently progressing and that thought drives me insane! 

It seems the GI feels strongly about surgery. I'm wondering if anyone of our parents  kids have had TI area removed? what was their experience thanks.


----------



## DanceMom

No surgery here, but I definitely understand the agony of the "wait and see game".  I always feel on edge because A is never well for long.  I hope you see improvements soon and surgery isn't necessary!!


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## Tesscorm

I think Dusty's kids had surgery on their TI area??


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## Maya142

Did the GI say no to Flagyl or adding another med? Do you think upping methotrexate might help?
My daughter did much better on a higher dose, 25mg.
Waiting is the worst! Glad the stomach pain is better.


----------



## my little penguin

If its surgery can you get a second opinion?
Maybe at cchmc chop etc??
Since changing meds can be undone ( even remicade since you have up to 12-18 weeks from last infusion but surgery can't.
Big hugs


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## Clash

I was in the grocery when they called and didn't have my notebook of questions with me, so I didn't think about the flagyl. 

The decision to try another med is in my hands, the GI wants us to get the surgeon's opinion concerning location, length blah blah blah. I'm not sure which way I am leaning. C is leaning toward surgery if he is told he has to leave Remicade. He wants to know if he has surgery and the area is removed could he then not have to leave Remicade. I told him that he could discuss that with the doctor. He is also hoping that this addition of EN will quell the inflammation enough to give the Remi a boost.

Thank you all so much for all the input, it really helps me stabilize and not stay in constant wheels turning, worry mode.


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## imaboveitall

Clash, been there with Violet, and dual therapy plus IV steroid got her well.
I know pred didn't help him in the past, but IV steroids are quite another matter, it knocked V's symptoms out within hours last May when she was so sick she vomited in PUBLIC (right after that, was hospitalized).

You know from my posts how I fought dual meds but it worked for V! Now after 9mos on dual (Remicade and Imuran, but just d/c Remicade) she is in such a good remission, both by labs (like your boy, hers are never really bad other than fecal lactoferrin and calprotectin), presentation, and pillcam. Like your fella, her involvement is largely small bowel.

Formula feeds will be great for him. No downside to those.

Oh and Flagyl and Bactrim are different classes of antibiotics.
V did 3mos Flagyl with no help of symptoms.


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## Clash

Thanks imaboveitall!

I know C's GI typically avoids steroids. I'm assuming if it was dire and he was hospitalized then steroids might be employed. His last hospitalization it was not but his testing was not showing dire and joint pain was his major complaint.

He is on dual therapy, MTX and Remicade. We had some compliancy issues last year over the MTX and since his FC level(only reliable non invasive marker) was 48, we dropped MTX. Some symptoms started to return so we started the MTX at a lower dose.

I'm wondering about upping the dose of MTX again. He had good results with this and no side effects. I may discuss this with the GI. 

C seems married to the Remi, which is odd since I know at times he is frustrated with the ride to the infusion center/GI is long. He asked soany valid questions at the appt and I was so impressed with his interest and input. Especially, since I didn't handle it as well and kept zoning out with each revelation!

C had him explain the reasoning behind surgery, certain tests and carrying on as is. I told my Hubs I wish I hadn't been mind racing because C seems way more at peace due to the convo whereas I'm stressing still!

Things are still improving.


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## DustyKat

I am so sorry I am late to this Clash. :ghug: 

You have been given wonderful advice and there is not much I can add except to draw your attention to two things when it comes to C…

1. His age of onset.
2. The location of his disease.

C was not out the realm of what is considered ‘normal’ when it comes to being diagnosed with Crohns and having Distal (Regional) Ileitis, it is confined to his TI isn’t it?, then being the region in which Crohn’s was first recognised and described there is the advantage that this type of Crohn’s has been well researched over the years both medically and surgically. 

As Tess has correctly pointed out both of my kids have Ileal Crohn’s and that is where their surgery was located. 
I agree with the viewpoint that in most cases surgery should be considered a last resort but not all and one of those is Ileal Crohn’s. I am in no way suggesting that C should have surgery but rather just wanting to make the point that surgery, in some cases, offers the best outcome. I don’t just mean in overt cases like my kids but also the more the subtle cases, particularly in children and young adults, where there is never quite a resolution from diagnosis to remission but instead a simmering of symptoms that come and go, that feeling of getting there but never quite making it, a growth and/or weight target that is just out of reach, you all know the drill. 

I dont know if you have seen this study Clash but it is well worth a read: 

*Decision-making in ileocecal Crohn’s disease management: surgery versus pharmacotherapy*

I can only speak of our experience that is coming off the back of having no choice when it came to treatment, so vastly different to you. :ghug: 
Surgery comes with its own set of legacies but Sarah had her surgery in July 2006 and has been symptom free since as has Matt who had surgery in April 2011. 

Just to touch on the antibiotics. As as been said Bactrim and Flagyl/Cipro are different classes of antibiotic. I don’t know what the normal regimen is in the US but I have found here that when presenting to hospital with a Crohn’s flare then IV Flagyl, and Steroids (Hydrocortisone), is the stock standard. Matt was also on oral Flagyl for 6 months, three months pre op and three months post op. Flagyl does have both antibiotic and anti-inflammatory properties. 

Thinking of you both. :heart: 

Dusty. xxx


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## Clash

Thanks so much Dusty. C has been improving this week but still a lot of sleep. His appetite and bms have been normal. 

As CD tends to have the worst timing, he was signed up to take his SAT this morning. It was the first morning he has been up before 11am but he pulled it together and went for testing at 7:45am and miraculously has been up since then.

We go next Thursday for the class on inserting the ng tube and formula feeds, hopefully. I mean it is scheduled but we haven't heard from ins.

His sister left out tonight headed to board a cruise with her friends for spring break. She has been so attentive to C since being home and he has been eating it up.

I'm going to hear what the GI and surgeon have to say. At dx it was determined that C's cd was located at the TI. The GI nurse said the MRI showed a long segment of the distal ileum was inflamed.? I'm going to get the report when we go next week for the ng session. Dusty, I have read that article when you posted it before and it is part of the reason I do want to weigh the options.

I know its mot the answer for everyone, my husband's niece had CD located at her TI and had surgery due to not responding to meds. The cd was back at that location and various others, has had 4 surgeries and now only has an inch or so of colon left with bag. Her CD is refractory and she is now steroid dependent.  I know it can go well or bad and there is a lot to ponder and analyze before making the decision but I am so grateful for all the opinions and experience given by all of you. You can't imagine how much it helps!

Btw, C's episcleritis showed back up tonight so that is not a great sign.


----------



## DustyKat

Ugh, it sucks that this disease is so complex and individual.  I am so sorry to hear about your niece and that C’s eye issues are starting up again. :ghug: 

I do wonder if there are subgroups based on location and disease type. I know the disease is individual but there seems no rhyme or reason as to why one person responds in one way and another, like your niece, becomes refractory and steroid dependent when for all intents and purposes at the outset symptoms and presentation could be attributed to anyone of a thousand people with Crohn’s. 

In our case I can’t help but draw the conclusion that Sarah and Matt’s genetic makeup plays a very large role in the development of their Crohn’s. Same location, same severity, same outcome, same response. Does their genetic make up therefore also dictate their response to treatment, both surgically and pharmacologically?? {shrug} 

I so hope C continues the upward trend to getting better and the eye issue is just a glitch. Fingers, toes and everything else crossed! 

Dusty. xxx


----------



## Clash

Dusty, I've often wondered the same.

I think genetics play a role for my husband's nieces as well. They aren't blood related to C but two of the three sisters have CD and both have severe disease yet started in different locations, I believe.

The one I mentioned above has had several surgeries with bad outcomes and the other refuses surgery for this reason. She is now on Tysabri but not in remission yet.

It hard not to look at their outcomes and not worry but then I think what if surgery is an option that will clean the slate for the meds to work more effectively.


----------



## DustyKat

There’s always more thoughts and questions than answers ay? {sigh} 

How about we send a couple of members here to med school, they can specialise in gastro/IBD and then find a cure! Problem solved! :ytongue:


----------



## Tesscorm

Re learning how to insert the tube...  if C still has questions after his instructions at the hospital, I posted a link to a youtube video of a girl inserting her tube.  It's on my post on the Kids on EN thread.  She does a great job of explaining how it's done - she does make it seem to be a long process and, in reality, the whole thing took S about 30 seconds to prepare items and insert tube but, she really does explain every step quite well. 

Hope he's continuing to improve!


----------



## Clash

Thanks Tesscorm, I think I showed him that vid when you posted it. I'm really hoping ins will cover this because if not we may have to come up with another plan...ughh.

Last night, on our scale he was at 111. I'm all confused now at remembering how that correlates with the GI scale. I think GI scale weighs two pounds heavier so 113 and he was 116 at last weeks weigh in on GI scale.


----------



## Mehita

I don't know if it's any consolation, but we have no regrets with the small bowel resection DS had. In a way, it really did give him a clean slate and he felt wonderful for several months... until he flared again, but that's just the nature of the disease. Our mistake was stopping meds after surgery. Had we started Remicade right away, everything probably would have gone much better this last year.

For us though it was pretty clear cut that we were working with scar tissue and both the gastro team and surgical team were pretty confident that surgery was the best option at the time.


----------



## Clash

Thanks so much for dropping by with your experience Mehita! I was hoping you would. I may have a thousand questions once we've talked with GI again and surgeon.

And on another note I dropped by the medical supply place and they were not very optimistic about our ins covering the EN. They haven't gotten the GI info yet and were just going on past experience. The info from GI was supposedly faxed shortly after I left. I have my fingers crossed!


----------



## Tesscorm

Good luck!!! :ghug:


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## Mehita

Are your GI and surgeon in the same hospital? I believe you can request that they sit down and meet together and come back to you with their recommendation. There is an official name for the meeting, but it escapes me right now.


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## Clash

Hmmm....they are at the same hospital. I'll have to ask about that, I guess I assumed they had already discussed it from what the GI said but then again it all seems a blur. I'll bring it up, thanks!


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## Clash

We are headed to the ER at the children's hospital. They are going to start EN there, he might be admitted, not sure yet. I will update when I can.

Maya142, the px I got from the ER for the costochonsritis is anaprox. I was supposed to follow up with gp tomorrow at 10am but had to cancel since I may still be in ATL with C. I've left a message with my GP's med asst about what is going on so doc may call me. Is anaprox good for this or is there a better med I should ask for?


----------



## Maya142

With NSAIDs it really just depends on what you can tolerate and what works for you. Anaprox (Naproxen) made both my daughters nauseous and after much trial and error, we found that my younger one could take Mobic daily and the older one takes Celebrex. They both take nsaids with a Prevacid to protect their stomachs.
Poor C, hope the ER can make him more comfortable!


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## Clash

I hope they can figure something out at ER. They were initially going to do a straight admit but then called back and said GI would be waiting go through ER, so I'm not sure what to expect.

I've taken mobic before for something musculoskeletal though I can't remember what. And also celebrex for a ganglion cyst, it helped the cyst but made my stomach upset. Still, I'll throw them out there to the GP because right now I can't take a deep reath without stabbing pain. It seems to be progressing faster than it did yesterday. Thanks for the info.


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## Jmrogers4

Oh Goodness, so much going on...  Hope things move/improve quickly for C and you can take care of yourself as well.  Sending loads of hugs :ghug: and hoping for things to quiet down for you both.


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## Clash

Thanks so much, Jmrogers4. I am lying down with a heating pad waiting on the hubby to arrive so we can head to ATL. I was going to drive but this chest pain is ridiculous! I swear my health issues have the worst timing! It didn't dawn on me til I got home and read the release papers that costochondritis was an ongoing thing, the toradol had taken the pain away completely so I was thinking all is well. About 1am, C woke me up feeling bad and when I sat up, oh my, the pain was back! C and I are quite the pair curled up in little balls on his bed trying to comfort each other. He said "Mom, put together I don't think we'd make a whole person." Poor thing, I wish I could take on his stuff as well.


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## Maya142

Clash, my older daughter was eventually given prednisone when her costochondritis got really bad. Her other joints hurt too but not as much as her ribs and chest. The pred took care of it relatively quickly.
Hope C starts feeling better soon! Sending hugs:ghug:


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## my little penguin

Good luck at the ER .
Hope they get you both straightened out quickly


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## upsetmom

:ghug:..I hope you both start feeling better soon.


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## Clash

Thanks, we are set up in a room in the ER waiting for our blood tests to come back so we can go on to our room. They will show him how to do everything with EN and keep him for a few days to monitor. They are going to give him a dose of solumedrol for the joint pain. The on call asked had we tried 6MP and said that might be something to try with remicade. He and his PA said from looking at the ft scan there was a stricture.

Hubby has gone to get a room and we are just waiting for transfer to GI floor. The nurses and docs have been awesome and things have moved so quickly. Since the GI called ahead we didn't wait and went straight through triage to room. I'll update later.


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## Farmwife

I'm glad things are moving quickly.

How are you holding up?


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## Clash

The anaprox really has knocked the edge off the chest pain. It's still there but not tovthe point where breathing hurt.

C is hooked up to the pump and receiving EN. He even allowed a training nurse to do the process. He was a champ at it.


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## Tesscorm

I'm sorry he's had to be admitted again but this will, hopefully, get him feeling well enough to get home soon!

And, I'm glad your pain has lessened too!  Will be thinking of you guys! :ghug:


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## Maya142

Good for C, I'm so impressed! My daughter won't even let us mention an ng tube!
Hopefully the doctors will come up with a plan for him.
Glad you're feeling better! My girls love their heating pads, don't know if you can get one in the hospital.


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## Clash

Tesscorm, thanks. Just the fluids he got in the ER made a difference, it brought some color back.

Maya142, I brought my heating pad with me! Ha


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## Clash

Ok guys, this is silly and illogical and I know it but here it is. The on call GI(another partner in the group, our GI starts his inservice on Friday) has suggested a switch to 6mp, ai know there are plenty of kids doing well on it but it is my scary drug, funny huh since my kids went straight to biologics and the combo with MTX.  I know it is irrational and I'm not even sure wherebit comes from but there it is. Odd how each mind works to paint its own fears. Goodnight all hope everyone is well.


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## Tesscorm

How's C doing, other than physically?  Is he okay being in the hospital again?  Must be so frustrating for him!!!  Really sending lots of wishes that the EN helps him while you all decide the best move forward.

(And, yeah, I understand how 'irrationality' can come!!! :ymad:  Unlike a lot of other illnesses where you are told about a med, you deal with the issues of THAT med, come to terms with it and move on...  with crohns, this happens over and over!!  Not easy to come to terms with a new treatment! :ghug


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## Clash

The attending GI asked C how long he wanted to stay, C said as long as it takes for me to feel 100% better. He is okay with it. We have a room for tonight and C said for me to stay with the hubby because they gave him some med that is knocking him out. Probably best for me with this pain, I can't have my next dose til morning and the pain is coming back.

Yeah, I don't even know how to analyze this 6mp suggestion.


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## Tesscorm

I'm sure you will be in more comfort in a real bed!!  Glad you can go and get some rest!  And that C is okay being in the hospital - can't blame him for just wanting to get on with whatever will make him feel better!

Go get some rest!!


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## kimmidwife

Clash,
 I am so so sorry I totally missed this thread update. I have been so crazed with Caitlyn. How are you both doing?
Caitlyn had her terminal ileum resected. It was not a bad surgery. She healed pretty quickly and together with methotrexate had a good 18 months of minimal flares. Unfortunatly for us the MTX stopped working but six months later we found LDN which has been our real miracle. 
One thing that really helped Caitlyn through the surgery and I reccomend you request this if he needs to have it is getting an epidural placed during the surgery. She woke up with the epidural and they kept it in for four days after. It was fantastic. She needed minimal pain medication and by the time the epidural was removed she was already recovering nicely.
Please keep me posted and PM me if you have any other surgery questions.
Again I apologize I missed this. Between my health and Caitlyn's as I am sure you well know it is sometimes hard to keep up.


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## DustyKat

Good grief Clash! :ghug::ghug::ghug: 

Fair dinkum, C is a champion! How are things going? 

And you too hun, how is the pain? 

Dusty. xxx


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## Clash

Anaprox(sp?) Has really worked on the pain. I think(hope) I'm coming to the end of the chest wall inflammation.

C has done great with the EN, they started him off on peptemen and a slow rate and kept moving the rate up. Now they have switched him to peptide 1.5 and will move the rate up one more time. He has handled it all really well. He hadn't had a bm since Monday, I think. But went a couple hours ago(collected for FC test). It was very solid which is not his usual.

His GI starts in-service this morning so waiting on him. I really want to push him about C's sleeping habits and patterns. It is something I want to get to the bottom of. We have tried and tried to straighten out his sleep schedule to no avail. He is restless and unable to sleep til the wee hours sometimes then over compensates way into the day. I just think the healing can't be at its optimal if his body is not in the natural pattern.

Oh the difference in his coloring since admission is phenomenal, his skin was so pale it was pasty leaning toward translucent but has rebounded to a healthy pink and olive. The difference is really unbelievable!

I may have already said this(everything runs together in hospital time) but the doc has said that he thinks the area on the ct scan is a stricture and there is proximal dilitation. Also, they can feel the inflammation when pressing on the stomach.

My POTs is really behaving right now and I am so thankful. I just had this worry that it was going to be all over the place and I was going to be skyping the doc from the adult hospital down the street! Ha 

I'm still not certain I want to wait out a 3 month trial of 6mp, if the present in service GI is right in that the inflammation seen on the ct scan last week is a progression of what was seen last year this time on MRE then in effect C may have not reached remission since dx. In which case, I wonder if surgery might jump start every thing and get us to a place where remission is possible with the meda he is currently taking.

Sorry this is so long, just easier to type/think all this out loud. Thanks for listening.


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## DustyKat

So good to hear that C is looking better! Bless him. :ghug: 

Okay, so progression on what was there last year, how long ago was the MRE? 

Certainly proximal dilation of the stricture and the fact that they are able to palpate the area means there is thickening present. Given the ?length of time this has been present are they talking scar tissue? I fear they must be particularly since you feel he may not have gained remission since diagnosis.  If that is the case then I think surgery is the only option Clash. :ghug: 

Fab to hear that you are feeling well hun. :heart: 

Dusty. xxx


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## Mehita

C's journey is starting to resemble DS's more and more. Proximal dilatation, anyone? During his ER visit this was what most concerned the ER dr. He was worried that section was going to rupture at any minute. He had pulled me aside and said whatever route we chose (surgery or 6MP) that I needed to keep an eye on the swollen part, not so much the stricture itself.

I don't want to encourage you one way or the other, but another thing the ER doctor had said was, in his opinion from what he'd seen so far, that DS was going to likely need surgery (because MRE's a year apart showed worsening) if not that week then sometime soon, so why not do it on our terms with our preferred surgeon... as opposed to last minute emergency surgery with someone who may not have the expertise of our surgeon. Just something to consider.

DS also pinked up with fluids and hospital care... but as soon as we returned home, he slowly slipped back into the poor state he was in before the ER visit. We just couldn't maintain the quality of care/fluids/nutrition he needed.

I hope things turn around for you guys soon (both of you!). :ghug:


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## Maya142

So glad you're feeling a little better and C is at least looking a bit better.:ghug:


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## Clash

Ahhh....C's GI came by this morning and we are on the same page with the 6mp, he said that the in service GI had taken levels and antibodies test but it was for nil because if there were antibodies no Remicade if there werent antibodies then he is flaring on Remicade and has reached the limit of tweaks. 

Dusty, the MRE was a year ago when he was hospitalized and the ct scan was last week. The MRE a year ago showed at the IC valve and I think it has progressed a bit more up the small bowel in the TI. He does think C is a good candidate for surgery and of course if this is scar tissue then surgery is a definite but still a consideration if it is inflammatory. He said he doesnt see surgery as a last resort for some types of patients(location/severity) and C falls into that category. So the EN will be used to see if there is improvement as an indicator of it being inflammation and buy time for the FC test to get back. Also, he needs a round of EN in order to gain the weight that would be necessary for good recovery if there is surgery.

More to come, the GI just stopped by otw to a colonoscopy and said he'd be back later to talk. 

Oh and he mentioned vedolzumab again.


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## my little penguin

I am curious why the vedolzumab and not humira .
Since vedolzumab is still not approved in kids and has good or bad results depending on which study you read.

Hope the Gi has more answers and things improve for him


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## Maya142

Isn't vedolizumab not even approved yet? I thought it would be approved in the summer? Fwiw, my daughter is 17 and her pediatric rheumatologist said even though Stelara was not approved for kids yet, she would let her use since she's 18 so soon.


----------



## Gmama

Clash I'm so sorry that C is going through all of this, but it sounds like you are well on your way to having definitive answers & a good medical team to get C into remission...I will be praying for a quick recovery, whatever the decision may be so that he is back to feeling good.
And on to you!!! I can't believe you have costochondritis on top of the POTS...this is the pits. I too was diagnosed in October with costochondritis. My dr was convinced it was my gallbladder. Lots of good advice already, but just wanted to add that I do get some relief from going to the chiropractor. Not that you have time for that right now, but maybe when things settle down with C. My experience is that going to the Chiro gives me some good relief, but it just doesn't last. My rheumatologist prescribed Lidocaine which just numbs the area, again not 100%, but has taken the edge off to fall asleep.
I feel like all the stress with LJ brought this on & when he is finally on the mend, it will go away.
Hang in there, you are a great Mom!


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## Clash

my little penguin, he hasn't explained it this time but I think an explanation he gave when we began Remi might be his reasoning. I'm not sure if I can effectively explain but I'll try. He drew what looked like say a heart rate on a monitor or seizmagraph(sp?) for earthquakes, so a line with high peaks and low peaks. He said for most people with CD the tnf alpha is creating the bulk of the inflammation and represent the high peaks, the low peaks are other players that vreate inflammation as well but tnf alpha is the big player and in these people an tnf blocker works really well. But in some people the high peaks(big players) aren't tnf alpha and so no reason to run through all the tnf blockers if that is the case. He also mentioned previously this is the same reason vedolzumab works so well in some patents and hardly at all in others.

Of course, this was dumbed down for me I assume. This may not be the reason and I will know more this afternoon, I guess.

They are bringing C a tens unit for his joints in case it helps but the nubain(sp?) Isn't working all that well takes the pain from a 7 to a 5.


----------



## Maya142

When my daughter inpatient they gave her morphine for her joints - it was the only thing that helped (well, and steroids).
I've also been told that different people responds to different classes of meds, which is why if Humira does not work for M, we will be done with anti-tnfs. I would ask about Stelara. It's an IL12/23 inhibitor (I think!) and will be approved later this year. I've heard very good things about it!


----------



## Clash

Maya142, same here I think since C is so close to 18 is why it may be an option.

Gamma, so sorry to hear you have costochondritis too! The anaprox has done a great job yesterday and today for me and I hope it continues but I'll keep chiro and lidocaine inind for later.


----------



## DustyKat

I hate to say it Clash but, I would be pushed to think that there hasn’t been fibrosis take place when inflammation has been present for so long. 

It is likely that this latest setback is acute inflammation and the current treatment will hopefully pull it back to its previous chronic state but unfortunately there it will remain.  

Of course hoping I am wrong, wrong, wrong! 

Dusty. xxx


----------



## Clash

I feel like we are dealing with some fibrotic tissue as well as an acute flare. 

My husband has been anti surgery after what his niece has been through but he has said everything seems to be adding up to surgery being the most viable option...huge step for him. I want whatever is going to give C a chance at deep stable remission, if that is surgery so be it.

Still tripping out on the difference in color from fluids and formula, it is mind boggling!


----------



## DustyKat

Oh and wholeheartedly agree with the surgeon, when it comes to Crohn’s isolated to the ileum, surgery can have very positive and long lasting outcomes. 

Dusty. xxx

ETA - Sorry slow to post. :eek2: I can well imagine your husband’s hesitation Clash and it must play terribly on both your minds. :ghug:


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## Clash

Yay we busted out! We are headed home now. C will be doing EN. He will have an appt in 3 weeks. No more Remicade and MTX is bumped up to 15mg for now. The appt will be a decision on plan going forward. Thanks everyone for all the support!


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## Clash

So we have arrived home. C connected himself to the feed. We have 4 days of formula, 5 days of supplies and the shipment should be here Tuesday. C did great with setting everything up and getting it going. 

So the total weight gain for the 4bdays was 2.2 lbs. That's a start!


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## Sascot

That's great you got home. Glad he is coping well. Hope you are okay


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## Clash

I'm doing good, so worn out. It is so weird to me how different hospital time is from real world time. I was all go and energy at the hospital but have completely crashed at home. 

So C has 14 hour feeds, it is peptemen 1.5 and it is set to 120 we can ease it up to 140 at some point if he so chooses.


----------



## Maya142

Glad you're home and C gained some weight! How does he feel about having stop Remicade, you said earlier he was a big fan of it?
Hope you both get some rest in the next few days.


----------



## Clash

He hasn't said much about stopping the Remicade. I think if the GI part of his crohn's pain started back he would probably be asking for Remi but since it seems to have only took away the tummy pain this time and not affected joint pain and fatigue.


----------



## kimmidwife

Clash,
So glad you guys are home. I want you to know that before Caitlyn's surgery we were also terrified and kept putting trying to avoid it. In the end the surgeon said we had to do it and had no choice. Thankfully it went smoothly and she recovered quickly. I hope you still manage to avoid it. Sending lots of hugs to both of you. Very glad to hear about the increSe I weight and that he is looking so much better.


----------



## CarolinAlaska

Glad to hear he is home and feeling a little better.  I hope he holds out well for the next 3 weeks.


----------



## Clash

I think since the CHOP protocol is EN for 80-90% then maybe it is not as big of an issue. Not sure yet but he knows he can eat but rarely does because he says he feels full, at least since the second morning.

Quick question though, his bag holds four cans when it starts getting low he unhooks and caps his Ng tube then puts the pump on hold caps it then adds the last three cans. Should he be doing this or wait til bag is empty and do the whole reprime bit and all?


----------



## CarolinAlaska

I think each full bag for Jaedyn was finished then line was flushed, but I might be wrong...


----------



## Tesscorm

We did it as you are doing Clash.  When the bag was getting low, we refilled it (without even stopping the pump).  This is also how it was done while S was inpatient at the hospital.  Our formula was supposed to be room temperature, so I would take it out of the fridge a bit earlier or, when rushed, let it sit in some warm water for a few minutes.  (But, there were times, S just took it out of the fridge and hooked it up immediately  - for the most part, he was okay but I do think it caused him stomach aches a couple of times.)


----------



## DustyKat

Good to hear you are home Clash.  

Sending loads of well wishes that all goes well and stays settled until the follow up appointment. Good luck to you and your boy. :heart: 

Dusty. xxx


----------



## my little penguin

Cold formula can cause the pump to clog sometimes that is why they recommend room temp. Since it's just a pump issue .


----------



## Gmama

So glad you are home & things are coming along. Hope you get some much needed R&R. Nothing feels as good as sleeping in your own bed! Sending big hugs your way:ghug::ghug::ghug:


----------



## crohniekid

Poor guy!  Glad that he is feeling well enough to be at home and have my fingers crossed that he continues to gain weight and improve!!


----------



## Clash

Thatnks so much guys!

Tesscorm, my little penguin. The hospital didn't say anything about the cases needing to be refridgerated. I remembered to ask the home nurse who brought us the supplies and showed us how to work the pump and he said not to refrigerate just to remember to flush tube between feedings so formula wouldn't clog. The formula is peptemen 1.5. Should I refrigerate?


----------



## Jmrogers4

They don't need to be refrigerated unless he's drinking it because it tastes better or it has been opened.
Glad he is home.


----------



## Clash

Oh ok Jmrogers4, I was just doing a little mini freak out scouring the boxes for a keep refrigerated sticker, whew.

Did any if you get the backpacks? Im torn since it will be at this level for 8 weeks then down to maintenance but C wanted to go see his grandparents and it was a bit of a hassle. Plus, he essentially carries the pole everywhere because he says it rolls to slow.ha!


----------



## Tesscorm

We had to make our formula...  came as a powder so, perhaps, once mixed, it's not in a sealed container like the peptamin??  

S did find the pole cumbersome and annoying.  We didn't get the backpack because, in S's case, the annoyance from the pole was only for a 2-3 hours in the evening and the rest was overnight (this is when he was on exclusive EN for 8-10 hours daily x 6 weeks).  Once he was on supplemental only, the amount was small enough that it could be done completely while he was sleeping.

If C just needs to run into another room for 10-15 minutes, I guessing it wouldn't be a problem to just disconnect for that time period.  It will extend the length of time but...  10 or 15 minutes wouldn't be a big deal.


----------



## Farmwife

I'm a bit late but I'm glad you guys made it home. 

My Grace has a back pack that's made for formula feeds. Our insurance covered the cost. But you can buy regular backpacks and just make shift one.


----------



## CarolinAlaska

Clash said:


> Thatnks so much guys!
> 
> Tesscorm, my little penguin. The hospital didn't say anything about the cases needing to be refridgerated. I remembered to ask the home nurse who brought us the supplies and showed us how to work the pump and he said not to refrigerate just to remember to flush tube between feedings so formula wouldn't clog. The formula is peptemen 1.5. Should I refrigerate?


No.  We've never refrigerated.

The backpack definitely comes in handy if he is awake for any significant amount of time while getting feeds.


----------



## Clash

I was really expecting more reticence and push back from C but he is really on top of this. He got everything ready for today. He had a friend want to come visit and I said it was fine but feeds were starting at 5. He said no worries he won't mind having to see me do all that. So they are watching a movie and playing Xbox.

His report card was here and besides a 90 in current events everything else was 95 or above. Also he just got invited to a neighboring school prom so all is going well


----------



## Tesscorm

So glad he's doing well with it!  S also had friends over often, they'd even all crowd in the bathroom to watch S insert the tube :lol:  All were really supportive and, other than their interest in seeing the insertion, didn't think much more abt it and just moved into other things like Xbox!  

And WOW with those marks!!!  Amazing!  You must be really proud of him!    great job mom!!


----------



## kimmidwife

Glad to hear he is adjusting so well and things are going smoothly! Hope he has fun at the prom!


----------



## imaboveitall

V was on 24h feeds and used a backpack that came with the Infinity pump (very light and small pump), IV pole at home.
Now she just puts the bag in her bedside table drawer and leaves the drawer open.

He should eventually start taking the tube out and placing it like V does, if you choose to continue it longer term. She had it indwelling 3 mos before starting to remove/place herself.


----------



## Clash

The plan was fir him to take it out and put it in. I think since he isn't out and about right now he figures, "what's the point" because it comes out at 8am and goes back around 4 or 5pm. His sleep schedule is still all messed up. The docs think it is a serotonin problem. So right now he doesn't get up til after lunch or later. The docs said there was no reason to force him back into a natural sleep schedule until we got the serotonin issue straightened out.

I was really glad the docs got to see his schedule and how much he sleeps, I think it was an eye opener.


----------



## Tesscorm

Actually, we did the same as imaboveitall re the nighttable...  For S, at the beginning, he found the sound of the pump annoying when trying to fall asleep so I also put the pump in the drawer and draped a towel over it....


----------



## Clash

I'll mention it to C. He sleeps with a fan on so I don't think he hears the pump, at least he hasn't mentioned it.

I'm wondering now if I should speak with the doc about it being indwelling until we back down to maintenance or if he will soon want to start changing it. I really thought he'd be quick to want to change it but he seems comfortable with. Maybe a convo I need to have with C.

So today he ate half of a scrambled egg sandwich, and a two grilled chicken tenders and that was all in his 10%.


----------



## araceli

Glad you are back from hospital. I hope you can have a
 break. Best wishes.


----------



## Jmrogers4

Nice job on the straight A's and a prom invitation as well.  Glad things are going well with the EN.
Yes I was a little surprised when Jack was on board with it in the fall but I think he was at a point, he just wanted to feel better and if that was what he needed to do then that's what he would do.


----------



## Clash

So we got our shipment of supplies today. C took his tube out and when we went to put a new one in that the company sent they were 8FR...ughh so pissed. C tried for over an hour to get it in. It was horrible! He was so stoic and didn't get upset but it was killing me. He finally let me try and I got it in first try but I am so unsure about this placement thing. They gave us ph strips and said make sure it is below 5, his have ranged from 1 to 3. Also, I think because he kept trying for an hour there was blood and his sinus were draining. I really don't like this ph thing, how do I know it is not in his lungs??? How does the stethoscope thing work, what did the rest of y'all do to check? I'm not liking it at all.


----------



## Tesscorm

I know Dusty has agreed with me before (I wasn't sure until she said so! :lol but, you will KNOW it's not in his lungs!  If it was, he would be gagging, coughing, etc.  I think the question about the lungs is more crucial when you're dealing with infants or those unable to respond as well as C would.

We maybe became very complacent  but S stopped checking the PH level after a little while, although he did continue to check for stomach fluid (but, even this, sometimes came up empty??).  Side note - do not let C drink red gatorade before checking stomach fluid!!!  Gave S and I quite a scare once until he remembered about the gatorade!  The stethoscope was hard to 'hear' and, I'm assuming you're listening for the 'pop'???  If yes, when you push the air in, make sure you push the air in quickly... slowly won't give you the pop sound.  Easier when two people do it - one pushing the plunger, the other listening...

Did you guys measure the tube?  If I remember correctly, to find the right measurement you do:

(Measure this outside his body)  Put the end of the tube (the part the will end up in his stomach) about 3 finger widths below his sternum (might be a bit more if he's tall??:confused2, from there the tube should run up his chest, up behind his ear, across his cheek and to his nostril.  The point where it reaches his nostril will be how far it needs to be inserted.  I don't know if this is helpful S's tubes had numbers on it and his measurement on S's was approx. 60 (but, I don't know if the numbers represented inches or if they vary by manufacturer).  Once you have this measurement, mark it with a marker because this will always be how far he needs to insert it.  To make it even easier for him, at that mark, cut some tape about 1-2 mm thick and wrap at that point - when he's inserting the tube, he doesn't need to worry about 'watching' for the right spot, he'll feel the tape.

Did they give C some lubricating and/or numbing gel?  S used it at the beginning and it helps the tube slide down easier.  Also, is he drinking water as he's inserting the tube?

I hope all that made sense!!

(Dusty - confirmation I'm give 'safe' advice is always helpful! :lol2


----------



## Clash

Thanks Tesscorn you truly eased my fears!

We are doing all you mentioned with measurement, marking, water and lubricant. C just woke up and came in and asked if I would please find some 6FR tomorrow to get by until we can get it ordered. He says the inside of his nose and throat hurts. I think the blood pulled when we checked stomach fluid was what the opening in the weighted tubes caught from so many tries. Twice when he pulled out it was coiled and painful.

I just felt so bad because I know it was painful and he was refusing to give up and I felt helpless. I know he was afraid for me to try after he had been at it so ling because his nose and throat were sore. So glad I got it in on first try but truly the damage had been done.

Also, how fast would you say the weight gain accrued? He saw some weight gain while in the hospital but not so much since coming home. I hope he doesn't get discouraged.


----------



## Tesscorm

S gained 6 lbs right away, in 2-3 weeks, then only another 4 lbs until the end of the 6 week exclusive period.  However, he was very active at that time (2+ hours of phys.ed. every day plus playing on a ball hockey and an ice hockey team) - dietitien said the formula dosage was calculated on 'average' activity so anything above or below average would influence weight gain.  Once S ended the exclusive period and began eating a regular diet plus his supplement EN (supplement was 1500 cal/day, 5 nights per week), he gained another 20 lbs in six weeks.  I imagine, being able to eat, he instinctively ate what he needed for his activities.

(His EEN was 3000 cal/day, every day)


----------



## Tesscorm

And, I agree with you re the blood...  it sounds like it was really tough inserting the tube... makes complete sense there might have been some irritation/bleeding. :ghug:

Poor guy!  I hope you can get a 6fr tube for him tomorrow!!


----------



## kimmidwife

Sorry to hear that he had such a rough time! Sending you both a hug! Hope things to smoother from here on!


----------



## DustyKat

Spot on Tess.  

You have the measuring right Clash…







As Tess has said, in a person that is conscious, an adult, cooperative and with no gag issues, the chances of an NG tube being inadvertently inserted into the lungs and not knowing it, from the patients point of view, would be very slim indeed. 

Just a couple of tips, you may already be aware of them:

1. Blue litmus paper is no longer the desired method of testing tube placement but used in conjunction with ph strips it may give you that extra level of reassurance to use them as well. They are cheap and you should have no trouble getting them from a pharmacy or online. When blue litmus comes into contact with acid it turns red/pink. 







I see that C isn’t on any PPI’s but for those that are or are on H2 receptor antagonists like Ranitidine, Cimetidine, be aware that they can change the acidity of the stomach and so may make accurate ph readings difficult. 

2. Place the tube in its packaging in the fridge. A cold tube can be easier to insert due to its rigidity. Also the rolled up position it is stored in, when unrolled tends to mimic the shape needed when inserting through nasopharynx and into the oropharynx. Be aware though that a cold tube can cause more nasal trauma if there is trouble inserting it and repeated attempts are made. 

3. When inserting ensure the chin is on the chest. Has the opposite effect to CPR. Head back opens the trachea, chin on chest closes it. So again the NG tube has an easier route into the oesophagus.

Dusty. xxx


----------



## imaboveitall

Is he drinking through a straw while attempting to place?
Is the guide wire in the tube?
Have you tried both nostrils?

Drinking while placing ensures the epiglottis is closed and chance of inserting in trachea virtually nil (you WILL know if it goes there, believe me. NO WAY with a conscious patient who isn't an infant that the pt won't start gagging violently).
Also drinking helps it slide down. V cannot insert without drinking.

Tubes minus guide wire are so soft they frequently kink. Use the guide wire, them pull it out.

V cannot insert in her L nostril, it always kinks.

I know V would Skype with him if he wanted, to demonstrate. Holla if he wants to. After doing it EVERY NIGHT for 5.5 years, we're sort of ninja at it.


----------



## Clash

Thank you Dusty and imabovebitall! He does drink water through a straw when inserting. I'll have to try the "refrigerating the tube".

I changed the order to 6FR we will have those coming in but I've spent all morning on the phone trying to find one to use til then to no avail. So frustrating.

He hasn't woke up yet, rough night with the irritation of trying so ling to get the 8FR down but I'm hoping that is better today.

ETA: Dusty I am going to get some of those litmus strips today, thanks for the tip!


----------



## Clash

Haha just reread the "ninjas at it" comment! C was so thankful that I got it on the first try he kept calling me in his room to say thank you mom. I think he knew how terrified I was to try it after he had been at it for over an hour! I just kept saying we can go to ER and have them place it. He was not having that. I'll mention the offer to him, imaboveitall, thanks!


----------



## Tesscorm

Do you think your GI's office would have any 6Fr tubes available if you explained why?  If it's not far, you could drop by and pick up one or two.

And, yes to what imaboveitall said re the nostril side...  S could only use the left side, never worked on the right.


----------



## Clash

C tried both side and he can only use the right side. The hospital and GI he uses is over 2 hours away so that isn't an option. I called local GIs but they don't have them, also all dme companies in our area and surrounding area they don't have them in stock. The local hospital said they don't have the size I need although I find that hard to believe. I mean the say they have 6FR but not the right length. I also tried the home health care places where I have friends working but no such luck.


----------



## kimmidwife

Did you try local medical supply places? They are basically like pharmacies but carry more advanced medical supplies. Just google medical supply store with your city name and it should come up. I forget the name of the one by us but I am pretty sure they are all over the country.


----------



## Clash

Thanks kimmidwife, yes I was including those with dme. There aren't very many in our area and the one I'm most familiar with said the only had two patients on ng tubes so they didn't stock the ng tubes. C says his nose and throat are hurting, I assume this is due to all the hassle of getting that tube in. He is still sleeping I just woke him to check for pain, fever etc.


----------



## my little penguin

Can you call Aspria even though it's not local and see it they can overnight on?
Same with GI can they overnight it to your place ?
Can he leave that one in for a few days to let his throat heal ?


----------



## Clash

my little penguin , I contacted the dme and they corrected the order and had some in office they were going to overnight. I was just hoping to locate one for today. As sore as his nose and throat are though he probably won't feel inclined to change the tube today any way. I'm just worried when he wakes he is going to think the pain is due to the size of the tube and not the fact that he spent over an hour trying to cram it down his throat. But , I guess I will just try to keep him comfortable till the new size gets here tomorrow.


----------



## Clash

Oh and C had an appt with the GP yesterday to go over hospital discharge summary and some new meds they wanted to try to straighten out his sleep schedule. The docs feel that C has low serotonin levels and that is why his sleep schedule is so wonky. They had him see psych. and he didn't feel C was depressed or anxious but agreed with the serotonin affecting sleep. He felt Celexa at 10mg would help we started that in hospital and they said it would take time to work and see effects so he also offered seroquel 50mg as needed we decided not to try that one. I spoke to the GP and he said the dose was really low and it would probably help him to fall off to sleep but still scares me.

He also went over the discharge summary and stated it read " the affected area of the small bowel was quite long." This is also driving me nuts, summary didn't have length, GI nurse said report didn't state length, in service GI said the same, Chase's GI said it was a long area but didn't have report on hand to elaborate. I should be receiving report soon but it just keeps playing on my mind!


----------



## kimmidwife

Sorry no words of wisdom. Do understand your frustration though!


----------



## Tesscorm

It just dawned on me that I still have some extra 6Fr tubes at home...  if you have any delays getting them from the supplier, let me know.  If you'd like, PM your address to me and I'll throw a couple into the mail tomorrow anyway.

Re the length - my impression from S's GI/nurse is that's it's tough to pinpoint an exact measurement...  all of S's MREs are vague re length, the most exact report said there was 20-30cm of inflammation.  I asked the nurse or GI how could they not know if it's 20 or 30cm - 10cm seemed like quite a big difference to me, I was told the 20-30 was probably only an approximation, that with all the curves/loops, it's difficult to give an exact measurement.


----------



## Clash

We should be in 6FR business with the next partial order and the ones he is over nighting to us but thank you so much for the offer.

That makes me feel a bit better about the length. I never thought of that. I guess I'm just anxious about this next appt. and where Chase will stand. I mean he had remicade and the ct on the same day and although the remi did stop the crohns tummy symptoms it is apparent from lack of weight gain and the progression of that affected area that remi isn't doing the job. So just worrying about the next step, I guess.


----------



## Tesscorm

These are all tough steps...  surgery, different meds, etc.  As difficult as the decisions are, I think it's even tougher to be without a decided gameplan.   But, from all you've said, it really does seem that C has a great team/GI behind him...  I would definitely take reassurance that the GI has been on top of all his symptoms and seems proactive in trying to stop the inflammation.  I think, C being on EEN, will give you a bit of time to see what the GI says and then think about it a bit.  :ghug: :ghug:


----------



## DustyKat

Antidepressant type medication takes about 3 weeks to take full effect. 

Re the Seroquel, if you did go down that path there is a 25mg dose available, well there is here so I imagine it would be available in the US too?? 

It certainly isn’t an exact science when interpreting images but in our case Matt’s CTE at diagnosis was exceptionally accurate. It stated he had 100mm of inflammation with a further 50mm of stranding proximal to this area. He did develop complications/flare within 3 weeks of his diagnosis that involved the 100mm area plus the stranded area. His post op report also gave the same figures of 100mm of chronic inflammation, as stated in the CTE, plus a couple of troublesome skip areas in the proximal 50mm. 

I know I have likely asked this before Clash so bear with me…:lol: What are C’s B12, Vit D and magnesium levels? 

Dusty. xxx


----------



## Clash

Dusty, vitamin D is low again so we are supplementing with D3, the one David posted on here. B12 was ehh...GI nurse said normal range but a supplement would hurt so we have that. Magnesium was normal but not sure that test tells the tale. Oddly enough, the hospital nutritionist told us to not give multivitamin(he doesn't take multi we supplement individually) while on EN because the formula will provide everything. But we are still supplementing.


----------



## DustyKat

Do you have the numbers Clash? 

All of those have the ability to impact sleep and after much reading I have to agree with David that the levels required for those with Crohn’s, especially ileal Crohn’s, can be significantly higher than those of the general public. Still within normal limits mind but at the higher end, I just find that the majority of health professional see a reading is within normal limits and leave it at that. Problem is they are often at the lower end of the normal range or lower end of mid range and it just isn’t enough.  

My aim for Matt is:

B12 - over 500

Vit D - 120 (US 70) 

Magnesium - at least .90

Dusty. xxx


----------



## Clash

His but d was at 24, we had it above 70 but it started falling again. I'm not sure about the magnesium and the b12, she gave me the numbers but I was in the grocery store at the time and didn't write them down. This was a week before hospitalization.


----------



## Clash

Ok so frustrated. We went to start the feed and could not pull any fluid to check placement. So C pulled the tube out we flushed it then after several tries got it back in and still can't pull any fluid. Not sure what to do.


----------



## Farmwife

Did you check with a stethoscope placement?
Grace had this happen and I think I had to put a bit of water through and then tried to pull it out. That seem to work but I made sure it was in the stomach.


----------



## Farmwife

Also is the length long enough?


----------



## Clash

Thanks. They didn't do stethoscope with us just ph strips. I had him lay on his left side fir a few minutes then checked again and pulled fluid. The tube directions mentioned doing this.


----------



## imaboveitall

We have NEVER checked placement. Not once. If that tube was in his trachea, you would know it I promise you.


----------



## Tesscorm

Clash, I really don't want to discourage you from doing anything you've been told to do but, once Stephen had his tube marked at the right measurement and used this measurement to insert, there was never a problem with placement.  We did check at the beginning but stopped after a little while as all was always good.  And, I'm sure that we also had times that there was no fluid when we tried to pull for stomach fluid.

Do you have the measurement of the tube from when it was placed at the hospital?  You can be assured they had the right placement and you could just use the same measurement.


----------



## Clash

Tesscorm, the original tube was marked at hospital but apparently not with a sharpie because by the time we changed it was wiped off. I tried to tell C since it was placed he didn't need to recheck but he is fairly apprehensive about all this and is following each and every step. I'm hoping that this will pass and be more lax over time?


----------



## crohnsinct

Ha!  If only they followed our directives as closely eh?


----------



## imaboveitall

God love him. They likely made him worried that omitting any step may have a terrible consequence. Tell him all the fuss the hosp makes re: placement is a CYA, liability type thing. When V was in hosp they tried to make her have a CHEST FILM done to ensure placement, said it was their policy. I was like, we do this EVERY NIGHT at home for almost six years, shall I buy an X-ray machine?

I can assure you not just from V but from my experience with patients professionally that unless you are dealing with an unconscious, or neurologically impaired patient or an infant, an NG tube placed in the trachea is IMPOSSIBLE to miss. Nurse Dusty, do you concur?


----------



## Clash

imaboveitall, in the beginning it was reassuring like "Great, he is taking this seriously." And though I've always known he was a black and white kinda kid I honestly can't believe he is still following it to the letter. Ha! I've read all of yalls responses to him and his response has been "well I'd just feel more assured following the process for now, Mom." Umm... Okay I have a clean room process you might want to look into too, son I would hate for some of the things that are no doubt growing in your room to affect tube insertion!


----------



## Tesscorm

LMAO!!!  

As long as he's doing the EEN, no harm following those instructions letter by letter!   I have no doubt he'll begin to relax about it all soon...  after a while, S wasn't checking placement, wasn't using lubricating gel, wasn't drinking water with it, forgot guidewire a few times (which, by the way, IS noticeable when trying to insert!)...   And the tape he used to hold the NG tube...  he'd cut so small (maybe easier to pull off?) that it was only about 1" by 0.5" (but it held!)

Did last night go alright with the 8fr?  Hope so...


----------



## Clash

So it went ok with 8FR but the 6FR came in this morning. I had a rough night and took a nap, when I woke up C had replaced his tube and was checking placement. No fluid but he still hooked up and the formula started coming out his nose. He re-inserted and is hooked up now. I'm not sure why he hooked up two hours early but whatever. 

He said he measured the new tube but also checked it by the old one so I hope it is not in his duodenum or something, ph was seven but he had acid reflux and heartburn earlier. I gave him pepcid.


----------



## imaboveitall

He sounds like V. I wanted to give her a Rocephin shot once, (antibiotic) an old colleague of mine sent me some with a hypodermic, to avoid a dr visit. She wouldn't let me, said "it's probably illegal". My old doc pal who sent it said, "only illegal if you charged her; that'd be practicing medicine without a license". She too is a by the book type, an extreme rule follower.
Excellent that he's taking it in and out himself. Excellent.

Tape hint: there is a tape called "Coach tape" that is the only tape that doesn't irritate V's skin. Available in the bandaid section.


----------



## DustyKat

I understand that is hard not to feel overawed by the whole process Clash and I too have a  child that is a stickler for protocol! Well in all things medical but it doesn’t extend to things like wardrobes as that is what the floor is for, you know where I am going here! :lol: 

imaboveitall is right, in a lad such as C he won’t be left guessing if the tube goes down the trachea instead of the oesophagus. Time and familiarity will ease things for C, bless him. 

Dusty. xxx


----------



## Clash

An update: C felt really well today. You could tell it in his demeanor. He packed up his pump, formula and supplies and went to spend the night at a buddy's house. He was so funny, it was like a role reversal, he approached asking me as if he was preparing me for the empty nest. He really tickled me.


----------



## DustyKat

Awww, bless him! What a fab lad you have Clash! Love it! 

:mademyday: 

Dusty. xxx


----------



## Tesscorm

:lol:  That's great...  I'm so glad it's all starting to work - right tube, feeling better, etc.!


----------



## imaboveitall

Love it. 
He was malnourished, poor boy. So many of these kids are, and it is just accepted or struggled with rather than just FEED THEM via tube.
His quick turnaround is just how V was back in the day. They need absorbable nutrition. No better way to get it than tube feeds of broken down formula. 
He sounds like a well adjusted, sensible kid. I wish all the kids and parents of these underweight, undernourished children were as sensible.


----------



## Clash

Ok guys, anybody got tips for this issue we keep experiencing. We have the 6FR tubes and are doing the refrigerate tip but the tubes refrigerated or not keep folding in C's nasal passage. Once they fold once they seem to never go in without folding. It is driving us bonkers and going through all out supplies.


----------



## Clash

To be clear it is actually past his nasal passage. He says when he hits this spot he can feel the tube raise in his throat as it starts to coil or fold.


----------



## imaboveitall

Guide wire. Is it in?


----------



## Clash

The tubes we trained with nor the tubes sent to us have a guide wire.


----------



## Clash

Ours is Corpak enteral feeding tube without stylet. If that tells you anything. We've got it back in the fridge but it literally coils or folds up. We've tried new tube, refrigerating, he has his chin to chest when inserting. We just don't know what else to do. We may have to switch to indwelling but the GI nurse said we'd have to change tubes once a week then.


----------



## DustyKat

When is he swallowing in relation to the tube coiling?


----------



## Clash

Hmm..He swallows at the gag reflex, he says he is not sure if it has coiled or not when he swallows the water but he said to say it coils at what he thinks is the back of the nasal package at the large opening before the throat. So frustrating because it coils so badly it actually puts a bend or dent in the tube so then it continues to coil there at that bend.


----------



## DustyKat

I wondered if the soft palate may be the problem. It can be difficult to navigate a tube past this area. 

I have mainly dealt with patients that have neurological and gag issues but when inserting a tube you can ‘feel’ when the tube has passed through the nasal passages and reaches the area you are talking about. It is at this point I tell the patient to start swallowing. This is well before the gag. Any hint of resistance I draw back and try again. 

Perhaps earlier swallowing might be worth a try?


----------



## Clash

Thanks Dusty, we are refrigerating again then I will tell him to try that. Fingers crossed and thanks so much for the response!


----------



## Tesscorm

And I was going to suggest he keep drinking until the tube in almost at full placement (I think that's what S did??). Also, when S first started, I held the glass of water and the straw in place, he used both hands to insert the tube and watched in the mirror. If C is not doing it this way, perhaps this will give him a bit more control to do as dusty said and draw back at any resistance. 

But my offer stands, I can put the ones we hv (with guide wire) in priority post tmrw for you...


----------



## Tesscorm

When they taught him at the hospital, were there any problems inserting?  Is he doing it in the same position now, ie sitting vs standing?  Also, and I don't know if this helps, but as chin to chest is a 'better' position, can he try moving his neck slightly when he feels it at that spot?  Maybe needs just needs to 'feel' around it???


----------



## Clash

When the tube was inserted initially at the hospital C agreed to let a student nurse do it, so there were problems but it was her first time. On the last day the training nurse just guided him on how to insert he tried several times and couldn't get it but then I tried and got it the first time so that was basically it since the nurse said it would take practice.

He is using the same technique as he did in hospital but I don't think he drinks water the entire time so maybe we could try that. I hold the straw and water in place for him. Maybe having him move neck will help to. I would say yes to you mailing the tubes with guide wires but I feel certain he won't try them unless there is a nurse showing him how. It is really hard to get him to deviate from exactly what he was shown. I even mentioned trying the freezer which he wouldn't do because Dusty specifically said refrigerate. 

Thanks for those tips I'm going to read them to him so maybe he will be more open.


----------



## Tesscorm

Is his ped or a walk-in clinic nearby?  Would it be possible for C to stop by and have the nurse help him for the next couple of days?  It seems wrong for you/C to have had so little instruction and support in starting this...  When S came home from the hospital, we had a nurse come every evening to help/watch him insert the tube for a few days and then she continued coming weekly, then bi-weekly, then monthly - continued to come monthly until S finished with the EN!!  After a little while, thought it was absolutely the wrong way for the medical agency to spend their  money but agency could only continue to cover cost of formula as long as we had a nurse visit at least once a month. :ywow:

Re sending my tubes...  actually, after posting, thought our tubes might not fit/attach to the bags you use anyway??

I hope he's managed to insert the tube by now. :ghug:


----------



## Farmwife

Second that clash. We had a home health care nurse come out and help with Grace. Can you ask the GI for a referral to get one?


----------



## DustyKat

> I even mentioned trying the freezer which he wouldn't do because Dusty specifically said refrigerate.


:eek2: :lol: Now that is literal! C, you have to bend and be a little flexible mate. :wink: Not as much as the tube mind but just a little. :lol:

It’s a bit like Goldilocks…

Room temperature can make the tube too pliable

Freezer can make it too stiff

Fridge is just right. 

Above all else…Good luck!

Dusty. :heart:


----------



## Clash

So we just tried after refrigerating. It took two times but he says it is in, ph below 5 and he is hooked up to pump. So now we wait if it is folded then about 5 minutes in the pump says pump clogged downstream and then we pull out. Every time we do this, when he pulls out it is literally folded into itself. Dusty I think you are right about the palate part because the end catches there when the fold comes out his nose.

I am going to call and report all of this to the GI nurse tomorrow. I don't want this hassle to deter C from this. So far he is determined and keeps trying because he says it has to be done but I know that could waver as frustration builds plus it is a bloody form of torture in my opinion. Tonight I need the wine and some nerve pills!

He has a GP we could see if they could insert but you should hear all the freakiness I have gotten from med professional s in the area that hear he is putting it in and taking it out daily. It's like I am speaking a foreign language!


----------



## Clash

Oh and Dusty, yes it was quite strange for C to say " No, I don't want to deviate from what Dusty told us." I mean I know I've put you , MLP, Tesscorm up on the CD pedestals but lordy it didn't take long at all for C to put y'all there!

I said "Well I read a nursing site that said a quick set in the freezer is what one nurse swears by." His retort, " That was one nurse, Mom not the committee, I am going with their recommendations." Ha!

Btw, Tesscorm he tried the neck move and felt that may have been what got it past.

As always, thanks guys for the invaluable support and guidance! You all make this seem so much more achievable and keep me out of the corner plucking out my eyelashes!


----------



## Tesscorm

LMAO!!!  Hey, whatever it takes!!!  And, can I bring that pedestal here for a bit...  would love my hubby and kids to see me on it!  LMAO!!!  Then maybe they'd listen to me for once!!! :yfaint:

But, so glad it's finally worked! :thumright:


----------



## Clash

Haha girl I will get right on that but if it is anything like my house all the pedestals in the world won't get them listening to me around here!

Oh one more thing, the bcc spot my mom had is healing nicely and she has been given some "chemo cream" to apply, with px coverage it was still like 184.00$ a tube! But whatever it takes! She will stay on relocate because her SED rate/RA is controlled so well with it and MTX.


----------



## DustyKat

In Clash’s house…if the corner is a rockin’ don’t come a knockin’! 

	
	
		
		
	


	





Well done C and Mum! :applause::applause::applause:

Whoa! :yfaint: But good to hear your mum is doing well, bless her. :heart: 

Dusty. xxx


----------



## Clash

LMAO! Yep Dusty you got that right!


----------



## imaboveitall

You need tubes with a guide wire.
When V tried without it, she encountered the same issue.
I too would happily mail you some but V's are 8fr. Also MUST DRINK the entire time.


----------



## imaboveitall

Actually maybe 8fr w/guide wire would be easier for him, maybe the difficulty is from the softness not the size. PM me if you want me to mail you some, I have with and without weights, sealed in package.


----------



## Clash

The 8FR bothers him but thank you so much for the offer!


----------



## Clash

The new tubes with stylet should be in hopefully tomorrow. I have a call in to GI nurse about how to use these. I've talked to C about it and hopefully it will go smoothly but I may have questions for all you guys. Btw, before hospitalization on our scale(some type of Google fit or some tech fangled scale) C was 111 now he is 119.1. He is so funny he kept weighing yesterday until he hit 120, I told him we were only counting the morning weigh in but he hit 120 before bedtime and was ecstatic.

Rheumy appt at 4 today.


----------



## kimmidwife

Good luck with appt! Glad to hear he is gaining weight back!


----------



## Clash

UPDATE:

Just got back from the rheumatologist. She feels his knee and ankle joint pain is a type 1 peripheral arthritis that runs concurrently with active disease in his bowel. Neither of these are flaring since the first week of EN and they have always ran with his flares.

When doing the physical exam she pressed on a spot in his lower back that sent him jumping from the table. After the exam she explained this was another type of EIM, that was spondyloarthropathy, but not AS. But she also said that the result was the same, fusing of the spine. She said he had great range of motion and she felt no fusing had occurred. She did an xray and blood work. 

She changed his pill form of mtx to injection and upped the dose. She said that mtx was great for joint pain but not necessarily spinal issues. We are starting here until she can collaborate with GI.


----------



## Maya142

That's what both my girls were first diagnosed with - juvenile spondyloarthropathy. Now my older daughter's SI joints are fused, and my younger one's are beginning to fuse so they both have been diagnosed with AS. 
Methotrexate helped them both a LOT, and Humira/Remicade have helped their spinal pain. Interestingly, both responded much better to Humira than Remicade. 
Good luck, hope he starts feeling better soon!


----------



## Clash

Thanks Maya142, the first rheumatologist we saw just felt it was type 1 peripheral with his joints and didnt really address his back. I really felt this one was thorough on initial visit.

She was very upfront with C(adult rheumatologist not ped) and honest with her answers for him. I thought I would get a fight on the shot but not yet. It may be a different story on mtx day.


----------



## Maya142

The shot isn't really painful, if that helps. It's a tiny needle. Both my daughters got nauseous with the pills, so in our case they were relieved to go to the shot.
The Spondylitis Association of America http://www.spondylitis.org/about/undif.aspx
is a really good and informative site. 
Sorry to hear that C has another diagnosis but hopefully treatment will help and he'll start feeling better soon.
If you have any questions, let me know! I've spent many many hours researching


----------



## Clash

She has also said he must swim for 30 minutes 4 times a week that it was the best thing to keep range of motion and help with the joints. He didn't have to tackle it like he was training for the Olympics but even casual laps would be beneficial. I've got to put a call in to the college wellness center as they are the only place in town with an indoor pool.


----------



## Clash

I'm hoping the shot goes well, it all seems to be piling up. C has been go with the flow on all these changes and said he would do the shot if that was what was needed but I know all the trials of the last couple months have to be weighing on him. Thanks for the info Maya142!


----------



## my little penguin

Also check for local aqua clubs - most have swim clubs which have practices every day of the week for kids from ages 6-18.
This way he could swim with older kids.
DS was also prescribed water therapy but since he already swims competitvely in a swim club that part was easy to do .
DS can tell a big difference in his joints if he takes a week off.

Mtx shot was not hurtful when DS was on it either .
Just watch the yellow staining of the liquid if you wipe it from the skin


----------



## Clash

Thanks My Little Penguin. I talked with the wellness center at the college and C is not old enough for a membership. The director said that I could contact the Rheumatologist and have her contact PT with the local hospital and px swim therapy with them as they use the college indoor pool. It is the only indoor pool(actually it is two indoor pools one heated one not). I asked about aqua clubs and they only have a group of little swimmers that are learning how to swim. All of the swim teams use the rec pool which is outdoor. We have an outdoor pool so no need to use that.


----------



## Farmwife

Sorry to hear about the arthritis for C. Does C shower in the mornings? We were told that's the best time of day to help the muscles.
Also Grace's PT aqua center has open swim hours for people to use the pool but don't need a therapist help. But I think you have to have at least one therapy lesson in order to do this. You might want to check.


----------



## Clash

This pool is at the wellness center so operated by the college. They allow PT to do therapy there without membership and age restrictions, otherwise you have to be 18 and pay 50.00 a month membership fee.


----------



## Maya142

If you do manage to find an indoor pool, even if C doesn't feel up to swimming, see if you can convince him to go anyway. Just being in the water helps my daughters, and I find that once they're there and in the water, they loosen up and are able to swim a bit.
I worry a lot about fusion (particularly since both of them are already fusing) and exercise is the best thing to keep them mobile. It's really hard though when they're in a lot of pain.
Poor C, he has so much going on!


----------



## Clash

What speed did your children have the pump set for? I know nothing about this but thought C's was a little slow when we started. Now the teenage boy has kicked in and he is constantly upping his speed. It hasn't given him any problems but should he being doing this?


----------



## Farmwife

Grace on a good day could set hers at 120ml an hour.


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## Clash

So does it correlate to age or weight or anything? And is there an optimal speed or a speed where things aren't absorbed. I know these may be goofy questions but since there is a copay with this formula for us , I want to make sure we are absorbing everything! Haha


----------



## Farmwife

Grace GI dietitian arranged her amount. Does his GI have a dietitian?
 Grace would get nauseous our vomit if the feed was to fast.
C's body should let him know if he can tolerate more or less.


----------



## Clash

C has a nutritionist at the GI office. I felt if he ramps it up too high it will make him nauseated and that would be the indicator to slow it down. I could call the GI office but was hoping to get a query on here first. I feel like I've been calling the GI everyday here lately.


----------



## Farmwife

Under my avatar is a support group for n-g tube. Lots of older people on there. They could give you an idea of what amount they use.

Sorry that's all the help I am.

How did C do last night with the tube?


----------



## Clash

He did great but hasn't removed and replaced just flushed since we are still waiting on tubes with stylets.


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## Farmwife

It's he in school?


----------



## kimmidwife

I wouldn't let him keep upping the pump. I would definitly ask what rate is appropriate and exactly how much he should be getting over what period of time.


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## Clash

Farmwife, he goes to a flex school. It is a private school that has a set up for independent study. He reports to school on certain days to take quizzes, tests or present projects. Each week he gets his assignments and can choose to complete them at home if he is unwell or in class. If he is unwell he can go in during independent study to have his proxy(teacher) explain any material he may be having trouble with. When he is doing well he goes to class like any other student.

Kimmidwife, they did give us a set rate but said it could be adjusted as he could tolerate and to fit his schedule ie. not having to get up in the middle of the night to fill bag with more formula. They just didn't give a top out number.


----------



## Tesscorm

When S left the hospital, he was running pump at 200ml/hr.  They told him he could gradually increase to 250 or 300ml/hr, as he could tolerate (ie nausea).  We were told 300ml would be max he could run at.  S played around with the speed a bit and pretty much settled at 225-250ml/hr.  He did run it as high as 275-280ml when he was in a rush (ie when he was on 'exclusive' EN so volume was larger, so more time needed...) but, I think he found anything beyond 250-275 was not as easily tolerated...


----------



## Clash

Thanks Tesscorm, that was exactly what I was looking for. C started at 100 in hospital after a couple hours they moved him to 120. The goal was 140 while in hospital but we were released before the scheduled rate increase. The doc wasn't worried, wanted him at 140 but any tweaking upward was up to us and what C could tolerate. He is at 160 now and is having no issues. But just from t reading on here I thought that was low compared to others. Just wanted to see what ranges worked for others near his age.


----------



## Sascot

Sounds like the rheumatologist was good. Hope the shots go well. Swimming is great for joints, although if he gets bored, I was told walking/running in the water is also one of the best exercises you can do.


----------



## Clash

Oooh my favorite thing about the Rheumy is she has patient portal so I can see all the labs and stuff the next day! Yay me! On that note, I just went over the labs she did and I a question for the committee.

As a note on all the labs at the bottom it states:
labs stable on HCQ except new onset anemia. repeat CBC in four weeks.

So I looked at all the labs and everything seemed to be in normal range. Am I missing something here? Isn't Hemoglobin that gives an indication of anemia? What are others? Thanks in advance.


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## Farmwife

Do you have all the numbers with reference ranges of his *Iron Study*. I believe that's what it's called. Right Catherine ?


----------



## Clash

It doesn't look like an "iron study" was done as I don't see ferritin as one of the tests but was interested in what would tip off a doc to anemia in the CBC, since that is the lab the note is posted on. She also did CRP and SED and chem panel I believe(the one with potassium and all)


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## Farmwife

Well then.....I have no idea. someone far smarter than I will chime in soon.:hug:


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## my little penguin

Sometimes you can only see the labs the doc released so even if the doc reviewed them but didn't release them they won't be in there yet .
I would think iron studies as well .....


----------



## Clash

Hmm... I put a call in this afternoon about the note but it'll probably be tomorrow now before I hear back. All the tests ordered on our lab order sheet match up with all of the tests displayed online and it doesn't indicate she was doing an iron study. Oh well, any idea what HCQ might mean?


----------



## kimmidwife

I don't know what HCQ means but did she post his hematocrit? That along with hemoglobin and iron studies can indicate anemia.


----------



## Clash

Yes they did post post of those. Both weren't close to low. I'll look them up and post them when back on my laptop.


----------



## Catherine

Clash

When you compare with previous blood test, can you see any numbers which have dropped or increased?

I know there are other number which they look at, but we use different name for them.

If they are saying heading to anemia, you would normal test iron, B12 and folate.  They can all result in anemia.  

Sorry I at work.


----------



## Clash

Ok so hemoglobin was 14.4  range 12.0-16.0 g/dL
hematocrit was 41.1 range 36.0-49.0 %


----------



## Catherine

What other numbers do you have on CBC?


----------



## Clash

That is a long list, any in particular you are thinking? I'm on my mobile so I'll have to wait til I can get to my laptop. There were 4 sets of labs , I do remember that. It was CRP, SED, CBC w/differential and Chem. Theonly number even close to the low value was sodium on the Chem panel. The rest of the numbers were solidly in the middle of the range if I remember correctly.


----------



## Clash

It won't let me copy and paste the numbers from the report. I don't have his last blood work or the time before. One was in the hospital and the other I haven't had sent to me. There are 2 more that are at the top of the range:

Baso% is 1 range is 0-1%
Absolute Baso is .1 range is 0.0-.1K/uL

others are 
RBC 4.84 range 3.80-5.70MIL/uL
MCV 84.9 range 78.0-98.0
WBC 9.5 range 4.5-13.5

there are probably about 14 others and then also the Chem panel.


----------



## Clash

We just picked up C's MTX in injection form. He was with me and I could tell the shot was not sounding like a good idea to him anymore. So I told him we could go by the GP and have them observe or give it to him the first time. We get in the car and while I'm entering all my purchases he pops open the syringes draws the.8ml and gives himself the shot! He said it didn't hurt at all.

Now we are back home and he came in my room and asked could he borrow my heart rate monitor because his heart felt fast. Lying down his heart rate was 113. I checked it 20 mins later along with bp and bp was 130/80 heart rate 104 lying down. Wonder if this is from the shot?


----------



## Clash

We are pushing fluids, his heart rate is still above 100 lying down and around 120 standing. I'm really trying not to freak out since it reminds me so much of my postural orthostatic tachycardia. I'm thinking(praying) this is dehydration. We are pushing fluids but will have to go to ER if don't come down.


----------



## Maya142

We've never had a high heart rate with the mtx shot (and my daughters have been on mtx on and off for 6 years) but I suppose anything is possible?
Really hope he starts feeling better and glad the shot didn't hurt!


----------



## Farmwife

Have you called the gi on-call?

Did it bleed after the injection?


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## Maya142

Just a suggestion- calling the on-call doctor might be helpful - he/she could tell you if this is common or if you need to go to the ER.


----------



## Clash

The GP, Rheumatologist and pharmacist all feel it is not related to the MTX, the Rheumatologist said push fluids and sodium and if it doesn't decrease or gets higher this evening then go to ER the GP said push fluids and sodium and if it doesn't come down by morning call him, if it goes higher go to ER.


----------



## Farmwife

Crazy. 
How is C reacting to all of this? 

Hang in there mom. I'll be praying for you both.


----------



## Clash

He is not reacting to it at all really. I mean he says he feels fine he can just feel his heart is racing. He has been doing his homework while drinking Gatorade. He absolutely does not want to go to the ER so it is going to be a battle if he has to go. Ughh.


----------



## my little penguin

Ds has had high heart rate before- last year- never did figure out why- we were told less than 150 was "ok" but he is a lot younger.
He was in the 120 to 140 at the time FWIW
hope things calm down soon.

Never was an issue while on MTX


----------



## Catherine

Rbc - number of red blood cells


----------



## imaboveitall

Clash V's HR always races when she's flaring.
Of course also jumps up when changing position; your boy may be a little POTS-y.
His labs are great. So are V's even when she's sick.
They sound similar in presentation. Nothing you've described sounds scary to me, I see it all the time over here.


----------



## Clash

I talked to the rheumatologist nurse about the note saying "new onset anemia" and she said although everything was in the normal range the doc is real particular(nurse's words ha) about it and that is why another CBC in 4 weeks. Still not sure what indicated the anemia since the hemoglobin, hematocrit and RBC were normal as were all of the other values but oh well.

Not sure what to do about this tachy, he is at 100-105 lying down and still around 120 standing. He says he feels tired like he could go to sleep but other than that fine. Of course that is the opposite of normal since he hasn't been sleepy at 9:30 since dx, more like after midnight.


----------



## Clash

We must've posted at the same time, imaboveitall. I asked C if he had ever felt his heart do this before and he said only after a running practice or something. His labs looked really good to me too but yeah his labs never have told the tale. 

Oh he is 122.9 this morning so still gaining weight!


----------



## Clash

Hey guys I just had a "duh" moment. C has had high heart rate before it was what led to having his ferritin levels checked even though hemoglobin was low normal. It is also what got us sent to a GI. He was anemic at that time. He had low normal HGB but deficient ferritin. I'll call the GI today. 

So if the rheumatologist is right(new onset anemia) which seems a good call now with high heart rate and past experience can I assume C is losing blood due to a flare? What are other factors you all have experienced if any?


----------



## araceli

My daughter had high heart rate together with vomiting, She felt sick, the vomiting went away in a couple of hours but She had to stay three days in the hospital due to heart rate not coming down.  Nobody new why. All test were normal. I hope C feels better soon.


----------



## Catherine

We had a trip to er with severe pain and vomiting.  The nurse tested her pulse and it was 129.  It was a very busy night and the nurse gave her oxycodone in the waiting room.  This led to her third course of pred.

For your information Sarah had ferritin level of 183 prior to dx with falling hemoglobin levels  due to iron deficiency anemia.  Although her ferritin was reading high her actual iron level were close to zero.  All other iron number were low.

When inflammation is present ferritin can act as a marker of inflammation.

http://pubs.rsc.org/en/content/articlelanding/2014/mt/c3mt00347g#!divAbstract


----------



## my little penguin

We were told the high inflammation for a long time depleteed the iron stores in DS so now that the inflammation was down the ferritin level was reading "true" showing just how low his iron stores were .
DS has been on an iron supplement for a few months .


----------



## Clash

I completely forgot GI closes at 12 on Fridays so I won't be hearing back from them until Monday. C's heart rate is still elevated but more noticeable when he is up and moving. I'm hoping the GI will grant an iron study. Always more difficult to get when his hemoglobin is normal or at least that was the case with GP before dx.

C isn't feeling bad and still gaining weight which is great. He is about 2.5 weeks out from what would've been his next remicade so as that time draws closer I will be anxiously awaiting any symptoms.


----------



## Clash

Things really seem to be piling up. I know I've mentioned my husband's nieces before, two of three sisters have refractory Crohns disease. The oldest who has failed every med and had several surgeries is facing yet another surgery. She was dx'ed as an adult in her early twenties so has always seen an adult GI(several in fact). My husband said early on after dx she would spend months out of every year in the hospital. The only med that would take her symptoms away was steroids and they were given frequently and for long periods of time.

Her last surgery she was so immunocompromised that infection led to sepsis and they lost her twice, she was put in a drug induced coma and spent months in hospital. She now has a bag and very little colon left. She is such an angel and such a good soul. Through her illness she has been so compassionate with others. She told C and I both when he was first dx'ed not to look at her as a standard case because she was extreme and nothing to measure by.

This surgery next week will be a hip replacement surgery(she is barely 30 yo if that). She has avn some type of vascular necrosis caused by all of the steroid use. Due to her state of immonsuppression the surgeon has told her if she does get infection from surgery his option will be to remove the joint replacement for six months to clear infection then replace again. My heart is just breaking for this sweet child. Through all of this she is more concerned about her sister health with a new med than what she faces.

Then, of course there is that little voice in my head that says, "Oh no, the med that was supposed to keep my kid on the up and up , with normal life experiences and no disease activity has failed."  What does his future hold. Sorry to be so down, it just seems to be coming from all directions right now and my brain is pretty much mush.

Oh on another note, C's xray came back and all looked good. No inflammation seen nor damage. I'm notbsure what this means for the spondyloarthropathy dx, any ideas? I'll call the rheumatologist nurse Monday but thought others here may have some experience.


----------



## Maya142

The x-ray being normal doesn't really mean anything. An x-ray needs to show sacroiilitis for an AS diagnosis, but it can take 7-10 years for that to show on an x-ray. Just because the x-ray is negative it doesn't mean he doesn't have spondyloarthropathy.
My girls both had MRI's done that show inflammation in their SI joints. They now have x-rays that show sacroilitis and that's why they've both been diagnosed with AS but intially they both had normal x-rays.


----------



## Clash

Thanks Maya142, that is what I thought. The report mentions metal zipper covers sacrum, so he apparently had his shorts on in xray. I'm assuming this would be an area she would want to be able to visualize as well.

The fact the report said no inflammation shown surprised me since when she touch his lower back in the physical exam he literally came off the table. Should I push for an mri as well? Sorry, I'm just new to this aspect of joint pain and I'm not sure what I should request to ensure I stay on top of the disease.


----------



## Maya142

You could ask for an MRI but the fact is, it probably won't change his course of treatment, right? I'm assuming since his IBD is a lot worse than M's, he won't be allowed NSAIDS and then Remicade should be taking care of the pain. Anti-TNFs (Enbrel, Humira, Remicade, Simponi and Cimzia) are the current best treatment for spondyloarthropathy. Stelara (IL12/23) is being studied. Studies show that Methotrexate doesn't help axial (spinal) pain but both my daughters are in much less pain everywhere (including their SI joints) when they're on it.

There is some evidence that Anti-TNFs reduce the odds of progression, so it would probably be best if he stays on one but I know that depends on his Crohn's. If steroids don't help him there's not much you can do in the short term. Heat, swimming etc. 

The only thing the MRI would do is show you if there is any damage/inflammation that doesn't show up on the x-ray. An MRI of the SI joints (pelvis) is quite short 30-45 min, but my daughters have a hard time lying on their backs because of the pain, so they hate MRIs. I know C has a lot of other stuff going on, so not sure if you want to make him do one more thing, you could always do it once he's feeling better.


----------



## Clash

Thanks Maya142. It really helps that you said all this. It validates what his rheumatologist said, she also explained that mtx wasn't necessarily effective for the spine. I think she would prefer C be on an anti tnf but he complained of the back pain throughout remicade and it was also not keeping his CD from progressing.

The last from the GI was if C is flaring with EN and mtx at follow-up then he feels surgery is warranted. I guess we will go over all of this at the GI follow-up and the rheumatologist said she would wanted to be involved in the follow-up to give her opinion on where C is with the arthritis and how she feels it should be managed. So I guess I'm just driving myself crazy in the holding pattern right now.


----------



## Maya142

Have you asked about Stelara? Even if he does have surgery, he'll need a maintenance medication, right?
It would work for both his joints and his Crohn's. I've heard very good things and it's what I think we'll try next if Humira does not work for M. Like for C, anti-TNFs help her, but not enough. She's been on Enbrel, Remicade and Humira (twice) so I think we're just about done trying them. She has done much better on Humira than any of the others, so if you do go back to anti-TNFs, don't lose hope!
Sending hugs!


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## Clash

I'm going to bring up Stelara. My husband's younger niece was trying to get on stelara for her CD but in the end started tysabri. But she had one GI that was very positive about stelara and is still hoping to get her switched. 

Thanks so much for giving me your daughters' experiences and helping me through all this new data, I so appreciate it. I hope both your girls find the meds that will give them freedom from their pain!


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## Tesscorm

Ugghh, I am so sorry you and C are dealing with new concerns!  It's no wonder you're feeling down and frustrated by all of it! :ghug:  Easy to understand how your niece's situation can weigh on you.  But, remember all you've seen here...  all our kids have been diagnosed with crohns but all their situations are so very different, their responses different, etc..  And, circumstances also change - how many have been here when things have been rough and are now away because they're off enjoying good times!  C is going through a rough patch just now but he'll hopefully find his miracle treatment soon and be feeling much better.

Remicade is not everyone's miracle drug and may not have been C's but that's not to say the next treatment choice won't be!  But, sending lots of hugs because I know, until you see the actual improvement, it's hard to relax. :ghug: :ghug:


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## Clash

Thanks so much Tess, my brain knows this but you know the panic sets in and all goes haywire! My brain just stays on overdrive. But hey the tubes with the stylets are in and C can work 'em in in seconds so that is no longer an ordeal! Thanks for all your tips regarding EN, they have been lifesavers!


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## Tesscorm

Yep, I absolutely know 'haywire'!! :lol:  I hope you can get some guidance from the GI on Monday.

I know nothing about the spinal issue but do hope it turn out to not be a worry.  :ghug:


----------



## my little penguin

Yep bug hugs your way
Btdt on the panic... 
Thought we were out of drug options for DS due to his age .
But things turned out ok .
I am glad your Rheumo wants an opinion on treatment .
The two specialities working together has really been a blessing for DS .
Good luck


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## Clash

Okay, thoroughly confused. I talked to the GI nurse about the heart rate and GI wants C to try a px of iron supplement, not sure of the name but it starts with an "n". So , I'll pick it up today.

Also his FC results came back. They were taken while in the hospital and a week after the ct scan that showed quite a long segment affected in the TI. The result was 127! 

This is what I know:
1. A week before the FC he was in a definite flare with episcleritis, stomach pain and inflammation felt by GI on exam. He went from exam to remicade to CT that day.

2. The next week still having joint pain in knees, weight was failure to thrive point so GI admitted him to give fluids and start EN. FC was also done at this time. Exam in hospital doc still felt inflamed area(or was that scar tissue?)

So questions:

1. So does the low FC result indicate that the affected area seen on ct scan is scar tissue?

2. Or is it just due to the fact his affected area is in the TI and FC isn't as precise?

3. Did remicade lower that affected area(if inflammation) to a level that was only minimal in the week between infusion and FC test?


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## Jmrogers4

I don't know Jack's area of inflammation in TI and small intestine only showed a slight elevation in FC (90 at base to 395 when inflammation present on MRE).  I think it's possible for remicade to lower level of inflammation but maybe it's just not keeping it there.


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## Clash

I wonder if C is dealing with scar tissue and simmering inflammation that really raises it's ugly head right before the next infusion.

We go to the GI on the day we would've been scheduled for remicade so that should tell us more too I guess, ifbsymptoms arise.


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## Mehita

Reading your post, my first inclination was scar tissue. But I also think Remicade could have cleared up any inflammation pretty quickly. Hmmm...


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## Clash

Yeah and now I'm upset. The GI nurse calls back to say GI feels it is a bit of both. I'm really appreciative since it was after hours. Then she goes on to say regardless we won't be changing treatment right now. At first, I didn't catch on to what she's saying and I say I think the GI appt scheduled for the day his remi would've been will give us some insight. Then I understand what she is saying and I say, the GI has already dropped remicade. She said when and I said when we were in hospital. Her reply was oh. Wth kind of reply is OH and thanks for calling after hours but look over case notes or start taking notes on what you've said Mr. GI. I couldn't even say anything else I was so upset.


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## kimmidwife

Oh gosh clash I am so sorry you guys are going through all this! If I were you though I would call back tomorrow to speak with the GI. To often we have gotten inaccurate info from the staff. Sending you a big hug.


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## Tesscorm

When is his apptmt?  But I do agree with Kim...  if his appointment isn't soon, I would call back tomorrow and either ask to speak to the GI or, at least, tell the nurse that you were left confused after her call and would like to clarify...


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## my little penguin

I can say for DS he had one FC at 243 while on remicade.
Our Gi said it was from a mini flare 3 months before.
He stated it takes a very short time to increase to the thousands for FC but can take a very long time to decrease to normal levels even on remicade .

I would talk to the Gi .


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## Clash

His appt is on April 17th, about 2 and a half weeks away. I know the GI won't be in the main office tomorrow so it will be Wednesday before I can call back.

I thought C would be perturbed about this as well but he said, I don't have a remi scheduled and if he wants me to stay on remi then he can explain it to me at the appt. The hubby has said the same that today's Congo really changes nothing and that he would rather speak with the GI in person so we can all look at each set of results together and have his undivided attention. 

C is still gaining, not sure if I mentioned but he is at 125.


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## Jmrogers4

How frustrating.  I would agree with a call to GI being in order to clarify and then when your meet face to face you can have your questions ready and research done.
Fabulous news about continued weight gain!


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## kimmidwife

So happy to hear about the continued weight gain! Keep us posted if you reach the GI.


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## Clash

So today we ended up at the ER with the elevated heart rate. I was hoping they would take his iron levels but know because that is sent off, small local hospital.. C mentioned there was a feeling of tightness in his chest when his heart rate goes up so we spent 6 hours there while they ensured he wasn't having a heart attack. They kept calling it chest pain and he'd try to tell them no it isn't pain just like a feeling when my heart rate goes up. So we now know he isn't have a heart attack and no blood clots. Follow up with GP which we wouldve went to first but he's on spring break vacay with family.

Oh and CVS doesn't know if C's iron supplement is otc or px but they don't have it in stock and have no idea why it didn't come in today. I'm a little freaky about the iron supplement anyway since there is no number showing deficiency and no one has looked at his ferritin levels.

Oh and after 6 hours in ER, C pretty much has banned me from ever taking him back to an ER, ever again.


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## DustyKat

:ghug::ghug::ghug: 

1. So does the low FC result indicate that the affected area seen on ct scan is scar tissue?

If you take the possible effect that Remicade may have had then low FC levels coupled with persistent symptoms would then to point to scar tissue.  

2. Or is it just due to the fact his affected area is in the TI and FC isn't as precise?

Initial studies did suggest that FC was not as reliable an indicator of inflammation in the small bowel as it was in the large. However later and more extensive studies now say that its reliability is equal. 

3. Did remicade lower that affected area(if inflammation) to a level that was only minimal in the week between infusion and FC test?

If there is a combination of acute and chronic inflammation then it is possible that Remicade could have had an effect on the acute inflammation resulting in lower numbers. Acute versus chronic (scar) would fit with the Remicade effect. Remicade is fast acting, so much so that it can have the side of creating scar tissue due to a healing process that is too rapid. I don’t mean this is the case with C, I am just demonstrating its potential healing times. 



> Oh and CVS doesn't know if C's iron supplement is otc or px but they don't have it in stock and have no idea why it didn't come in today. I'm a little freaky about the iron supplement anyway since there is no number showing deficiency and no one has looked at his ferritin levels.


As you know, it really is imperative to get his Iron Studies done so his ferritin levels can be reviewed. Regardless of his Hb you need to establish if you are dealing with anaemia of chronic disease or an iron deficiency anaemia. As has been said though, chronic inflammation can artificially inflate ferritin levels so the whole picture needs to be looked at. 

Anaemia can cause tachycardia (fast heart rate) simply because the heart has to work harder to get less, mature oxygen carrying red blood cells to the vital organs. Rest will improve the situation as the heart has less work to do. Exert yourself though, even something as simple as getting up and walking and the cardiac workload instantly increases and so does the heart rate. 

So what is causing it? It may well be the type of insidious bleeding that can occur in the small bowel. It’s not overt but rather more like a dripping tap, not much on its own, you can’t see it with the naked eye, but over time all those drips add up. 
Or it could be scar tissue, acute inflammation or both. They will both cause malabsorption and the TI is one key area where folic acid is absorbed. 

The supplements: Most of the iron supplements start with F or have Fe in their name. Nu-Iron is one exception that I can think of and you are justified in being concerned with supplementing iron if in fact iron levels are normal. Short term use is not a problem, only if used over longer periods of time. 
Another I can think of Nephro-Fe. This is a combined iron/folic acid preparation. 
Just be aware of these combined types of meds if folic acid is needed more than iron, we were caught out with this once. Sarah was already on Folic Acid 5mg three times a week and needed an iron supplement. The GP decided to kill two birds with one stone and prescribed Ferro-F. The iron component was fine but when her next blood result came back her Folate had dropped significantly. The problem was she had gone from 15mg a week to 2.1mg as the Ferro-F only had 300mcg of Folic Acid. 

Good luck and thinking of you guys! :heart: 

Dusty. xxx


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## Clash

Thank you for all that info Dusty.  The questions you addressed are exactly what I am going to bring up with the GI and will now be incorporating your replies.

I went back and read my post from last night. Wow it is a wonder anyone got anything from that.

Just to be clear all of that was sarcastic banter. I was not worried that C was having a heart attack that is just all the hospital latched on to when C mentioned chest tightness which made the trip fairly useless.

C's heart rate is elevated at all times now , meaning even when sitting or lying it can be higher than normal. It may not be tachy but still high, kwim. So sometimes 90 resting, sometimes 104 but then if he gets up and walks it goes to 125-136 and remains there. The really great triage nurse felt C was possibly dealing with orthostatic problems due to low blood volume but unfortunately he was not in charge of C's visit.

The iron supplement the GI px'ed is polysaccharide iron brand name niferex. C's GP being on vacay sucks because I would really like to get an iron study done before we start with supplementing. I do feel this is one of two things:

1. Some form of anemia due to the reasons Dusty mentioned.

2. An orthostatic issue caused by the excessive bed rest which has led to a deconditioned state.  

ETA: They did a bolous of fluid fairly quickly because the triage nurse said that would build blood volume as opposed to a slower drip. His heart rate did improve with this, at least resting hr improved.


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## DustyKat

Okay, I have misread things, I thought this was C’s second ER admission in the last week. :facepalm: 

Re the dehydration, I see you are pushing fluids so…do you still think it may be playing a part in things? Have you seen his urine? Is he losing much fluid via the bowel? 

I’m sorry, I should have articulated better. Anaemia can cause increased heart rate at rest. I was thinking along those lines with the lower numbers at about (104) and up around 130 on exertion. 

And just a couple of other things that I know would have thought about that may be feeding into the increased heart rate: 

Pain - is any present.
Infection - will increase heart rate. 
Anxiety - either with his own situation and/or that of the extended family. 

Dusty. xxx


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## Clash

No Dusty your post was dead on to me as far as what you conveyed. I completely got everything you were saying. I felt you understood my post I was just worried everyone thought I was concerned C was having a heart attack when in reality I was hoping for iron studies and lab work. Yet the ER latched on to chest tightness in a 17 yo and so we got EKGs, xrays and d dimer results...ughh.

He is urinating regularly and I don't think he is dehydrated. He gets plenty of fluids I was thinking more of deconditioned state and orthostatic intolerance due to low blood volume. A hypovolemic type of situation due to being in the bed for so long. This is probably far more unlikely than some form of anemia.


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## Clash

Oh and the CBC last week at rheumatologist and this week at ER showed no infection. He has no pain and I seem to be the only one quietly stressing about his health. Since the feeding tubes with stylus came in he's all pro at the feeding and is enjoying his week of spring break...well except for me hauling him to the ER yesterday...He wasn't happy with that at all.


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## Clash

Okay kimmidwife hit the nail on the head the appt for remicade hadn't been cancelled and that coupled with the reg nurse being out resulted in the GI thinking we were still pushing remicade. He would rather forgo the treatment and do another eval instead. So at this up coming appt we will be discussing the next step for treatment.

C has his physical therapy eval next week and is looking forward to that. He is also weirdly looking forward to the next MTX shot to see if it doesn't hurt again, huh?


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## Farmwife

Grace looks forward to her Mtx shot. I think she feels it helps. I guess if she thinks that, I won't argue.:hug:


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## Clash

Ok wow I'm going to have to go back on anything I said about the local ER. The doc that saw him yesterday just called to check on him and went over all the lab work with me and complimented C on how well he seemed to handle his illnes and how polite he was. She said his hemoglobin and hematocrit was stone cold normal. I can't remember the hemocratit but hemoglobin was 13.8(didnt ask for range) but googling if she counted him as an adult then he is at the very bottom of the range but if a child then it wouldn't be. What do you guys think?

She was pleased with who our GP was and said she'd be glad to make sure all docs got all the test results.

ETA: all other labs she went over with me were normal as well.


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## kimmidwife

That is very impressive! Glad to hear. I am very curious what the doctor will say at his appt. I know you will keep us posted.


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## Catherine

The ranges are different everywhere.  Sarah hemoglobin is 11.7 which is considered normal for an adult female.  My youngest daughter is 11.5 this is also considered low normal she only 15.


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## Catherine

I think you need to know what level is normal for him.


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## DustyKat

Clash said:


> hemoglobin was 13.8(didnt ask for range) but googling if she counted him as an adult then he is at the very bottom of the range but if a child then it wouldn't be. What do you guys think?


I would regard a developed 16 y/o male as an adult. 

The lab we are using at present has the Hb range as 13-18. Since you are saying that C is at the low end with a reading of 13.8 then I assume the hospital also uses that range??
If so then you have to further break down the reading into male and female. Whilst 13.8 is a normal reading, for a male you would like to see the reading at the higher end of the NNR (Normal Reference Range). So as a general rule of thumb:

NRR 13-18: Female 13-15 Male 16-18. 

Dusty. xxx


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## Clash

I'm going to pick up the lab today. I looked at his CBC from the rheumatologist which was 7 days before the one done at ER. His value was 14.4 and range was 12.0-16.0. I wonder and I guess it depends on the units used to measure if the drop from 14.4 to 13.8 in a week is significant?  I will go by and pick up a copy of the labs today and see if the same units of measurement are used as well as the normal range the hospital lab uses.

ETA: What you are saying Dusty , about NNR then male and female would be in line with the rheumatologist notes. She considered 14.4 , new onset anemia even though the range was 12.0-16.0


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## DustyKat

Yes, compare apples with apples.  

That said, I personally wouldn’t see 14.4 in NRR of 12-16 as indicative of new onset anaemia. Even fluctuations 14.4 to 13.8 may be just that, a fluctuation, unless further testing tracks a downward trend. I think the rheumi needs to further clarify her comments.

Just a side note about me. :ybiggrin:
I have at times become quite obsessed about blood numbers, can you believe that?! :lol: But the most frustrating times of all is when different labs have been used. One minute I have been sailing along in a sunny dream world of no asterisks and then BAM! We use a different lab and evil rears its ugly head in the form of an * Arrrrrrrgh! 

Dusty. :ybatty:


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## Clash

Ha...no Dusty you obsessed? 

The rheumatologist nurse only explained it by saying the rheumatologist was real particular about hemoglobin numbers and C would need to be checked in 4 weeks. Since it was just a note on the labs and I didn't hear from her by phone about it then I can only assume she was flagging it but didn't feel it was terribly concerning.

I'm going to make an appt with C's GP for when he gets back next week. Yesterday evening sitting up C's heart rate was 114. I know with exertion it will go even higher. The polysaccharide iron should be in today and I guess we will just supplement until I can get in to see the GP. I really hate supplementing without knowing the numbers of an iron study but I don't see any way to get that done until GP is back next week.

Although, I'm freaking out about this heart rate and all the blood work and what it all means C is not concerned at all. He doesn't feel bad(although I think he seems more fatigued) and is just going along as if he doesn't have a care in the world...ahhh to be young again!


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## kimmidwife

Clash,
I am wondering if he was better hydrated on the second blood draw. Dehydration can make your hemoglobin more elevated since your blood is more concentrated.


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## Clash

Could be kimmidwife. He did look a little dry to me when we went to the ER. I even thought at the least it would be good if they gave him fluids. 

I'm just ready to get to the bottom of all of this.

Btw everyone, my husband's oldest niece came through the hip replacement surgery well. She is in a lot of pain but the doc said they would have her walking by this morning and hopefully discharged tomorrow. So far no markers of infection, thankfully!


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## xmdmom

The hemoglobin is good. My son (20) would love to have such a hemoglobin; the best he can do is 12.   I don't know what to make about the difference between 13.8 and 14.4 without a third value to see if there's a trend.  If dehydration affected the HG values, he would have been better hydrated with the 13.8 than the 14.4 (less hydrated).

How long has he had the elevated heartrate? Did they do an ECHO and/or EKG in the ER? What do his doctors attribute the elevated heart rate to? It doesn't appear to be due to anemia or dehydration.


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## Clash

xmdmom, the last time he was anemic his hemoglobin levels were normal but his ferritin levels were deficient. So he has had normal HGB levels and been anemic due to the low ferritin levels before. At that time he also had an elevated heart rate.

They did ekg, xray and blood work including d dimer to check for clots and every thing was good. On the ekg it was normal, sinus tach though.

His GI is going off my phone call and discussion with rheumatologist and feels it is probably anemia again, hence the polysaccharide iron. The GP is on vacation this week but we have an appointment for Monday so I am going to get him to run and iron study.

Just picked up labs from Monday a week ago and this week from ER, they were also faxed to GI today.


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## xmdmom

I've heard of iron deficiency with a normal hemoglobin but I'm not familiar with anemia with normal hemoglobin.  Anemia is usually defined as a hemoglobin below a certain level.

I was not aware that low iron by itself (with normal hemoglobin) could cause a fast heart rate. I thought elevated heart rate only occured with a significantly lowered hemoglobin.

Did he seem to respond to the iron last time?  I don't know anything about polysaccharide iron.


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## Clash

He did respond to the iron but he had a lot of issues with the supplement he was px'ed. I can't at the moment remember the name but due to that is why he was px'ed the polysaccharide iron this time. He wasn't on it for long last time and it seemed to me the start of remicade and how much he improved on it in such a short time did ore for the anemia that the iron sup. But it has been so long I might be mistaken.


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## xmdmom

I looked up polysaccharide iron and saw Bifera, which my son did try, but it didn't work for him.  I could definitely believe that the Remicade or other effective treatment for Crohn's would improve anemia faster/better than oral iron.


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## Clash

The brand C is pxed is Niferex but the pharmacy is having a hard time getting it and it is frustrating me to no end. 

I agree with you about the treatment getting him there faster than an oral iron supplement. Im hoping for the iron studies first of next week and if all are normal then I'll take C to my Electrophysiologist and let him check him out, do an echo and hopefully an event monitor or at least a halter monitor.


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## Catherine

If our gi got the same drop in haemoglobin results she would retest the haemoglobin again earlier the normal.  The retest would be on confirm whether the drop was a normal variance between tests. Or that the haemoglobin was indeed heading in the wrong direction.

My understanding is the level of haemoglobin is not always reason why the symptoms occur.  When the haemoglobin drops to the level the individual body is not use to quickly you get more severe symptoms.  Some people get symptom at higher levels.


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## Clash

Catherine, that is what the diagnosing GI told us with C. He said if he was experiencing symptoms and ferritin was low , then HGB wasn't as important as some people experience symptoms at higher levels than others.

Since the first test was at rheumatologist and the second was at ER, I got copies of both maybe units of measure is different? 

The one done at rheumatologist on 3/25:

Hemoglobin 14.4 range 12.0-16.0 g/dl
Hematocrit 41.1 range 36.0-49.0%

At ER on 4/3:

Hemoglobin 13.8 range 13.5-17.1 GM/DL
Hematocrit  39.9 range 39.3-49.7%

ETA: Thinking maybe GP will run one on Monday as well too.


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## xmdmom

Yes people may be symptomatic at different hemoglobins but I'd be really surprised if someone got a fast heart rate due to a hemoglobin close to 14. It's definitely contrary to everything I was ever taught about anemia.  That doesn't mean it's not true.


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## xmdmom

Not different units--they may be different age norms;  teens vs adults.


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## Clash

Thanks, I didn't think the units were different but then wasn't sure since capitalization was different! I thought maybe there was a difference in range for the same reason you mentioned. 

It is going to be a long weekend for me as Hubby and I are going out of town to visit relatives and C will be with my parents. We were supposed to go for two nights but down sized to one. 

It is spring break for C this week but doesn't mean much since he doing flex school with independent study.


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## Gmama

It's hard to get away, but try to relax and enjoy it...you are WAY overdue!


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## Tesscorm

Enjoy your weekend and try not to worry!!!  You deserve a break! :ghug:


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## Clash

Update:

C had his GP appt today for his elevated heart rate. Of course both times it was taken at the appt it wasn't tachy, 92 and 88. But GP had hospital report where it was 126 the checks throughout that ER visit.

He is checking his ferritin levels, tsh levels and has him on a 24 hour heart monitor. Of course when we got home C called me upstairs and just propped up on his bed it was 124 so hopefully the monitor is catching all that. The aggravating part is this is just a 24 hr monitor that has to be sent off and read as opposed to one of the new holster monitors or event monitors that auto uploads so we are in for a two week wait.

At the GP today, C was 127.6 lbs so still gaining weight!

Oh and I go into his room a little while ago and his formula is just drip, drip, dripping into the floor! He had unhooked to go to his car and get some work and didn't put it on hold or something. Worst part....He was sitting 4 ft from this and didn't notice...seriously?


----------



## Clash

So I am starting to freak out a bit today. C's iron levels should be back and if it isn't some form of anemia causing his elevated heart rate then I don't really know what to think. I guess it could be deconditioning, not really sure if it fits. He has his pt eval on Wednesday and I'm don't know how his heart rate may affect that. 

It really just blows my mind that I went through all the diagnostic tests for an elevated heart rate and episodes of sinus tachycardia to find I have some crazy dysfunction of the autonomic nervous system with a silly sounding acronym, POTs, just a few months ago and now C is experiencing an elevated heart rate. I just feel this feeling of dread of here we go again. All rationale tells me it is ludicrous to think we could be dealing with the same thing and another part of me is worried that it is something even more concerning(not taking away from those that suffer with POTs).

I'm both ready and afraid to get the iron results back. Days like today totally suck.


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## imaboveitall

Clash I promise you V has the same thing when disease is active and I was told by the pedi CARDIOLOGIST (yes she was seen by one, had an echocardiogram, EKG etc) and GI both that dysuto will be exacerbated by active Crohn's, and not to worry unless she starts fainting.

Not saying your fella is A-ok or don't investigate, just trying to help your worry :hug:

He likely has POTS as V and you do. Does his BP drop with standing? V's does and she gets tachy (ex HR went from 84 to 126 in doc's office when he made her stand up, diastolic BP often is in the 30's).


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## Clash

Thanks imabiveitall. We haven't checked his sitting to standing bp. Since his hr just started being high regardless of sitting or standing and the increase wasn't more than 30bpm I haven't really allowed myself to go down that road. He can be sitting with a hr of 111 and then after standing for several minutes it will be like 136. So close to the required 30bpm increase for a POTs dx. But C doesn't feel dizzy from it or really anything other than he can sometimes feel it race. When my hr is over 105 I can physically tell but maybe that is due to age difference or something. Also I don't have the drop in bp upon standing so not really sure how that feels, my runs a bit low on its own, 90/60, feels normal to me.

If he needs further investigation then I am thinking of getting the ped GI to refer us to the ped cardiologist at the children's hospital. I know he is almost 18 but in our area he would see the same adult EP cardiologist I do and that guy is a bit too indifferent for me.


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## imaboveitall

Start checking his BP when sitting, standing and lying down. If it fluctuates, you are likely dealing with dysuto. (This was per the cardiologist, she did this in exam). V has just diastolic hypotension (dysauto related), her systolic is always normal but diastolic can get so low it cannot be detected. This freaks some nurses out.
I was told the tachy is the heart's response to the dropped BP, (trying to pump faster as pressure is lower) so maybe your guy's BP is also dropping.


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## Clash

Ha! Great minds think alike, had the nurse check bp sitting and standing and no change. We turned in the heart monitor so more results to wait on. She called right when we got home to tell us C's ferritin was on the low side. It wasn't in when we went by. I don't have the units but his level:

37 range 26-388

I guess it depends on the type of dys. you have for POTs a bp drop is not required just sustained heart rate of 30bpm within 10 minutes of standing(40bpm ages 12-19) in the absence of orthostatic hypotension or a sustained heart rate of 120bpm within 10 mins of standing. Right now C doesn't meet the criteria by a poor man's tilt table but who knows.

So what does every one think of the ferritin level? The GP said ferritin doesn't affect heart rate HBG dies but agreed that symptoms could be individual at different levels just wasn't sure 13.8 would be low enough to feel symptoms. He hopes the monitor will help direct us.


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## Tesscorm

Certainly anyone can respond differently to their body's fluctuations but HGB of 13.8 doesn't seem to be significantly low (ie S is always around 130-145, I imagine the equivalent to 13.0-14.5).  When I had problems with low HGB a while back, I had a racing heart rate at any type of exertion, walking up a hill (not steep), going up more than 10-12 steps, unusual fatigue - at the time, I didn't know my hgb was low and just thought I was out of shape :facepalm:, but when my dr tested, my HGB was around 83 or 87 (8.3 or 8.7) - much lower than C's???

But we all know our kids respond so differently to various lab results so I guess that could include sensitivity/response to HGB levels.

Is C's ferritin level from blood or stool?  We have different levels here - S's results are always ferritin-blood, normal range is 10-171 and S varies widely from a low of 14 to a high of 67 (no 'clear' trend, no 'strong' relationship to treatment, just wide jumps).  Our ferritin-stool range (31-300) seems more similar to the normal range you mentioned, in this test (S was only tested once, a month before diagnosis, while flaring), he was at 92.

Not sure if any of that is helpful???

:ghug:


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## Maya142

When M had iron infusions, her ferritin level was 6 I think. Her hemoglobin was 10-11 (but she's always on the low side, that's normal for her).
37 doesn't strike me as very low, but I suppose if it's usually higher it could cause symptoms? Sorry, I can't remember much of what the pediatric hematologist told us!


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## Clash

Thanks guys. This was a blood test that he had not stool. I only remember his heart racing that one other time. I'll go back and see if I can find that lab, I don't think the HGB was much lower but it seems the ferritin was much lower than the value he has now. The nurse at the school kept checking his hr then because he was in her ofc sick so much(right before and during dx) she was always concerned about it but once we started remicade I remember it leveled out because she was happier when she checked. This only sticks out because it seems that woman was calling me 3x a week about his heart rate. I finally just told him to call me if he felt unwell and I'd sign him out because a trip to her office for CD symptoms always resulted in a hr check and phone call.

But any who, this doesn't seem terribly low to me either so hopefully we will have more direction when the monitor results come back. The GP did say he wanted him to go ahead and start taking the iron the GI px'ed. I just found a pharmacy that had it yesterday. My pharmacy has had it in on order for a week!


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## Catherine

Do you have the other iron numbers?

If I remember correctly C's Crohn's is not in remission.

The ferritin level is Ok, as long as it is not being raised by inflammation.

We have rarely had ferritin out of range but have had all other numbers out range on the iron panel.

Sarah's ferritin level was 180 when told her iron levels were zero.


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## Clash

Catherine, I can't even tell you if the others were run, I'll call tomorrow and ask. I wouldn't doubt it if they weren't since ferritin was the only one I mentioned. Which is ridiculous but seeing as I had to push on the ferritin with the GP I bet that is all he ran.

I can't wait to get to the GI, I don't fully understand all the correlations between the different iron values but I know I can get him to run everything and go over it with.

Just frustrated tonight. Thanks everyone, you all keep me sane and help me to keep pushing forward.


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## Tesscorm

Yeah, just reading all this, I think I once remember writing out a nice, easy to read post about how inflammation affects iron (I guess it was an issue at some point and I researched it :lol but now...  I can't remember how it all connects! :ybatty:

Hopefully, the monitor will shed some light on what's causing the hr fluctuations and you'll have more answers from the GI as well!  

For now...  try to sit back and set aside the worry for tomorrow (a glass of wine may help! :wine


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## my little penguin

Fwiw DS ferritin was a 9.7 (10-300)
After oral iron ferritin is 25.??
We haven't seen Gi yet but will soon to discuss .
Not sure how all the iron numbers fit either .

Good luck


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## Clash

MLP, what type of iron sup was he on? I know you've mentioned it before but I was just wondering.


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## Tesscorm

I don't know if you are buying an 'easily absorbed' type of iron supplement but, my daughter was first using Slow-FE and when her iron wasn't increasing at a quick enough rate, her doctor changed the supplement to Proferrin and this one made more of a difference.  But, she was almost 18 years old, not sure if either could be used for children.

Kimmidwife has also mentioned a liquid iron supplement that her daughter has used.


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## my little penguin

DS takes chelated iron.  Iron bisglycinate by Albion labs from solgar .
Chelated iron is "suppose " to be easier to be absorbed and cause less Gi upset etc...
That said DS had diarrhea and some blood when he started the iron .
Gi had us add a small sandwich and so far so good .
DS has been on it since the end of January .


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## Tesscorm

Not sure if Proferrin is chelated iron (didn't see mention of it on the site) but here's their description.  FWIW, both my daughter and I use it and the only side effect that I've found is that it makes both of us 'more' regular (in a good way, no diarrhea nor constipation).  It does say for adults - although, perhaps, C would be considered an adult in this case??


What is Proferrin?

Proferrin is an iron supplement made up of heme iron polypeptide naturally sourced from bovine hemoglobin. It is indicated for adults, 18 years and over to prevent or treat those at risk of iron deficiency.

What is heme iron?

Heme iron is essentially the iron in hemoglobin devoid of the protein which is removed during digestion or processing. Heme iron is readily absorbed via specific heme receptors. Heme iron absorption is not affected by food, phytates (bran or wheat), polyphenols (compounds in tea or coffee), calcium, or by achlorydia (low stomach acid). Heme iron is absorbed as is by the intestine, without any additional processing or conversion needed.

You may take Proferrin anytime with food or drink as there are no dietary restrictions.

Side effects such as constipation, diarrhea, nausea, upset stomach and cramping are less than are found when taking ionic or salt irons.


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## Tesscorm

Probably totally off base but was C taking pred recently?  Patricia posted re adrenal insufficiency even after tapering and was just wondering if this could be a factor in C's heart rate??


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## Clash

No, C hasn't had pred sins dx two years ago.

So meds he has started recently or had dosage change. Started xyzal(allergy med) for the season about 3 weeks ago, mtx injections, celexa 10mg a day, and he has been on 2000 of vit d but he started EN which is supposed to provide all nutrients, need to check and see how much vit d that would be. So maybe a med or dosage change has caused the hr increase?

I could guess this out into next year but probably won't get anywhere. Ughh.


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## Tesscorm

Yes, you're right abt the guessing! :ybatty: we just hate the waiting!! 

Re vit d - S did supplement with 1000 while on supplemental en bcz formula only provided 600 and he was taking another calc plus d supplement. Total was 2000. So, yes, check what his formula provides. He may not need the extra d??

The worries never end...  S had a really bad cold/flu last week with fever, coughing, etc.   didn't want to panic but tough when you're not thr to see how they really are. Then, Yesterday, txts 'mom, I feel way better but when I cough, my phlegm is brownish-red. What do u think?'  utahere: 'I'm coming!'  :lol:  But, didn't panic, we talked our way into thinking it might hv been the tail end if the sinus infection and seems to b gone tdy. Whew!!  But hate how easy it is to panic. Of course, I was immediately thinking remi and lung infections, etc!


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## Clash

Don't you just love the college years...independent enough that you usually aren't in on any day to day details until the dreaded sick texts! I swear the first year J only tested when she was at the point of deathly I'll. It has come full circle by her senior year so I'm getting daily updates now most of which entail why she needs extra money for the month!

I hope S is over the flu/sinus gunk and back to the college life quickly!


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## Tesscorm

:lol:  I get those 'i need money' texts too...  and mostly from my daughter who lives at home!


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## kimmidwife

Clash,
Fast heartbeat is listed as a rare side effect of Xyzal. See the link,
http://www.webmd.com/drugs/drug-148...rugid=148996&drugname=Xyzal+Oral&pagenumber=6


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## Clash

Kimmidwife, I looked that up last night. I guess it could be a possibility but this is the second year he has used and had no effect last year. Anyway, I'm putting it down as a question for sure!

He had his pt eval today, took about an hour. He will swim with the pt twice a week and has some at home exercises to do.


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## Clash

Tesscorm, I just got the sick text from my daughter. Her text at 12 am no less was: I don't feel good.

I asked what was going on and she said nauseated and headache. There is a bad stomach virus going around her uni, goodness knows I hope she doesn't get it!

It is my birthday weekend and we are planning to go see Lion King in Atlanta.  We try to catch a couple of plays a year when time permits, also gonna do some shopping. My daughter is going but C had already seen it on Broadway so he isn't. After we planned all this he got invited to prom so I'm gonna miss that. I have told him to make sure he gets plenty of pics and all that jazz. So sad I'm mot going to be here but he is probably glad, I always drive him crazy with pics! Of course if J has the stomach flu I'm not letting her near me so I might have am extra ticket and they serve wine at intermission! LOL!


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## Tesscorm

:lol:  Is the ticket up for grabs?!?!?  :bigwave:

Hope J doesn't get sick!!   It would be a shame if she couldn't see the show with you.   And totally get missing C's prom!  I would be so upset as well (but, honestly, S would probably feel the same way re me taking pics!! :rof


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## imaboveitall

Hey, I just saw your post in another thread that said the boy has gained 18lbs! In just four weeks!
Love love love it. :thumright:


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## Clash

I know, imaboveitall, it is so fantastic! This is on our home scale that is one of those techy fitbit scales. The day before his hospital admission on the fitbit he weighed 111 now he is 129. He has been weighing right after shower in the morning. He was admitted on March 13 so today is exactly 4 weeks ago!

Also, the PT told C when he was manipulating his ankles and such that he could tell something about growth plates, C couldn't remember exactly but that it meant he still had some growing to do. Does anybody know how he could've determined this or was it just something positive to say?


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## Maya142

Now could C convince my daughter to try ng tube tube feeds  ?!!
That would be a feat! 
Very glad he's gaining! Not sure what the PT meant though.


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## Clash

Thanks Maya142 we are so happy with the weight gain but honestly my harping didn't get C to try it either, it was probably more to do with me talking about Tesscorm and S. He did so well on it and Tesscorm made it seem like it was no big deal for S. That and the remi nurse freaked out on C about how much weight he had lost and how serious it was that he just finally said okay I'll do it! It helped that he couldn't really stomach boost or ensure!


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## Clash

First, C just gave himself his MTX shot and he has a little belly pudge!  The look on his face when he saw it was quite funny.

Second, I hate nighttime, his hr has been higher in the evenings and he said he felt a little short of breath. His hr was 128 sittingvat the time. Last check 97 sitting so it had cone down. I am just ready forb some answers but having to wait on the monitor results to come back. I'm going to call tomorrow about tsh results, maybe they are in.

He doesn't act like he feels bad, in fact he was pretty much bouncing off the walls today so I'm trying mot to get worked up. 

No CD symptoms yet and we are 6 days out from when our next infusion would've been. Fingers crossed symptoms stay away!


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## DustyKat

I don’t agree that a low ferritin wouldn’t cause tachycardia since it is tied in with Iron. An anaemia would also fit with a symptom of shortness of breath. 

Refresh my memory Clash, what is C’s B12? 

If low or on the low end of normal, a consideration since he has TI involvement, this article should be of interest to you…

*[URL="Low B12 Linked to Orthostatic Tachycardia in Adolescents"]Low B12 Linked to Orthostatic Tachycardia in Adolescents[/URL]*

Dusty. xxx


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## Clash

It has been some time now I guess, since it was tested, I think Dusty. When he goes to GI next week I'm going to push for a CBC with diff., an iron study, a vitamin panel including B, D, folic, magnesium any others I should ask for?


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## DustyKat

You have covered just about everything we tested regularly Clash.  The only other things I have tested on a regular basis is LFT’s and UEC’s (I think that is what you guys call a CMP?) and Zinc. 

Oh and ESR, CRP. 

Dusty. xxx


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## Johnnysmom

Does he occasionally take zofran?  It can cause prolonged QT and tachycardia.  My son was having issues with tachycardia and shortness of breath while on Prednisone but he was also occasionally taking zofran.  The night we landed in the ER I can't remember if he had taken any zofran that day, I didn't even think of it at the time because it wasn't a med he took regularly.  They found a prolonged QT on DS's EKG.  Once I read the black box warning for zofran I thought maybe it was a possibility.


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## Clash

Dusty, he had CRP and SED checked 2 weeks ago. CRP was .5 range <.60 and SED was low normal. I'll have to look at LFT and CMP not sure about those!

Johnnysmom, I had no clue about zofran and heart issues. C doesn't take zofran though and his EKG was normal, just sinus tach.

I did notice the corner of C's eye was a little red last night, usually I would automatically think episcleritis which would mean CD symptoms soon to follow. But allergy season is so bad here that upon closer inspection his eyes seemed to have that allergy glaze redness. The next few days will tell the tale on that.


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## Jane and Nick

Hey guys, hope all are doing better. Nick has recently complained of a feeling like his throat is closing up and has occasional fits of coughing which sound forced, to the point that I say relax take it easy, breath. He says it make s him feel like there is something to clear and he can't breath. They are few and far between but a little scary, it occurred to me they may be acid reflux and explained this to Nick, but find the power of suggestion to be very powerful. Perhaps I will add a Zantac to the mix.


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## Clash

Hopefully, that will take care of the problem. If not you might want the doc to check he may need nexium to be px'ed.


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## Clash

Sooooo....the heart monitor results came back normal which is the craziest thing I've heard. During that 24 hour period we took his heart rate twice with two different types of heart rate monitors each time and both times the monitors agreed with each other, both timesbhis heart rate was in the high 120s while he was propped up in bed.

His GI appt is Thursday morning, I have a list of questions and concerns a mile long. Hopefully, we will decide on a way forward from here. His weight gain is so awesome. Just from the time he ordered his tux til 2 weeks later when it came in the employee at the tux place could tell he had gained weight.

We are three days out from when his next remicade should've been and so far no symptoms have started to return. That is so odd to me, how over the course of two years on remi he went the bulk of it with no symptoms(i know lack of growth is one but I mean stomach, mouth ulcers, blah blah blah). Two "flares" and both times we thought this is it, remicade is over. So strange that the doc implies that the disease has progressed to a long segment yet a day after his last remi all CD symptoms improved. This disease is so damn confusing.

He has his first swim therapy today and a second job interview at a restaurant he applied at. He is so excited about the possibility of a job. I''ve told him that just putting himself out there is awesome and if he gets it great if not there will be other interviews. I'm a bit concerned about overloading himself but all is a part of life, I guess.


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## Johnnysmom

Sounds like great news!

We experienced the same thing with Johnny, on 6mp for 2 years and still struggling to gain weight and high fecal cal.  Then one day- his fecal cal was 47 and he started to gain weight.  I don't know if the process of healing just takes a very long time or if his body decided to go into remission on its own.  We hadn't done anything new, things just started working. 

Keeping my fingers crossed that he gets the job!!


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## DustyKat

Thanks for the update Clash!  

Good to hear the heart monitor results came back normal BUT I hope you can get to the bottom of the tachycardia. :ghug: 

It is so brilliant to hear that C is continuing to gain weight! :dusty:

About the healing: I wonder if sometimes it is like the chronic wounds I deal with…

You have breakdown.
You stabilise the wound and for sometime it doesn’t get better but it doesn’t get worse. 
You may or may not change treatment a number of times with no obvious response but again it doesn’t any worse. 
Then for no rhyme or reason the wound suddenly goes through a phase of rapid repair. 

…I guess it could be. 

	
	
		
		
	


	





Dusty. xxx


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## imaboveitall

Great update, love to hear of weight gain.

Keep on with those feeds and he'll look great even if he feels crappy. I know people wonder how V can be so sick when she looks so healthy. Keeping his nutritional status stable will carry him through periods of disease activity with one less concern. :hug:


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## Clash

I've thought that too, Dusty. If I had to put C up to others with active disease with symptoms he hasn't had it that bad yet the disease progresses.

If I had to list my concerns, the common ones would not come into play, bms, stomach pain, mouth ulcers, inability to eat, nausea. My concerns would be:

messed up sleeping schedule(inability to fall asleep)
Episcleritis has shown up right before infusion more times than a flare of bowel issues
Lack of growth before EN
Lack of endurance energy during activities
And of course progression of area from February 2013 MRE to March 2014 CT scan
Last but not least area being deemed a stricture.

The GI keeps saying C's disease is worse than what appears in blood work and symptoms exhibit. But finding a way forward from a place where symptoms aren't constant seems to be a difficult one. Doc says if things go downhill then surgery would be next step but to me he is using(has used) appearance, symptoms and blood work as markers when he has clearly stated they aren't great markers. I think doctors find it hard to meld obvious progression of disease with what they see before them which puts C in this strange holding pattern most of the time. Just frustrated guys, sorry.


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## Clash

Well C's GI appt is tomorrow and all is still going well. His weight looks good, tonight he probably ate 1500 calories ovee what his intake should be. Along with formula feed he had tacos for lunch and then steak, sweet potato, soup and cheese cake for dessert! This is not his usual routine at all but as we were in the city and went out to eat he really wanted to eat at a favorite restaurant.

So far this stretch no CD symptoms and since switching to MTX injections from pills he has had no back pain! Yay! 

He did get the job he interviewed for I'm just hoping, hoping, hoping it doesn't over tax his system and have him backslide. He was so thrilled to get the job and is chomping at the bit to start. He told them about his CD and spondylitis and the boss was really great about it. The boss said he better not find out C was missing pt or doc appts for work. He told C he was really impressed with his maturity and the way he presented himself. He was the youngest at the interviews and the only one called back 2nd interviews and hired at this round so over 30+ kids! So fingers crossed it is something he can handle.


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## kimmidwife

Wishing him so much luck with his job!!!!!


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## Jmrogers4

Awesome and even though you're worried you must be incredibly proud


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## Clash

I am really proud of him. But the best part was seeing the pride and excitement on his face when he got home to tell me...priceless. He had been saying he didn't have a chance because he was young and it was a college town so college kids would get it over him. You all should've heard some of the interview answers he gave...the boy is a salesman!


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## Tesscorm

Wow, lots of congratulations for C!!!  So great for you too...  so happy and proud of your baby!  We just live for these moments, eh?!!!


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## Clash

Update- GI appt

GI appt went well. C looks good and feels good. GI was pleased with his weight. He said C case was complicatated. He thinks we are most likely dealing with scar tissue since his FC level was low and it had been a good indicator in the past.

We are going to continue with the ng tube and mtx injections. He does feel C is going to need to do surgery but feels it would be better to do on our terms and not in an emergency situation. He thinks the ng tube is providing the weight he will need for surgery. He says the MTX maybe helping too but said there was no way to really know until we fully eliminated feeds. C wasn't put on EN for a flare but to provide nutrition due to obvious malabsorption. The GI said, originally all studies dealt with EEN but now CHOP and other studies had shown almost equal to equal efficacy with 90/10% feeds. 

When we first visited the nutritionist she said they would write C up as 90/10 but anything C got in food beyond 10% would be fine because weight gain was the goal. The hospital said the same, anything over what formula would be providing would just be gravy. GI at this appt said since it is obvious C is getting more than 10% food(last night supper was ribeye, baked sweet potato with brown sugar and butter, loaded potato soup and cheesecake for dessert!) that technically the EN wouldn't/shouldn't be treatment but just nutritional supplement but that as good as he was feeling maybe it was or maybe mtx was sharing the load.

So labs done and fc to be in place when needed. Keep gaining, taking MTX injections and will follow up after 4 more weeks. If symptoms arise call right away. He doesn't want to overload C with tests and appts but will be scheduling an MRE and possibly a scope. Heart rate was 77 in his office and he said looking at all the numbers and levels it was not related to any type of anemia, possibly deconditioning and improvement may be seen with PT.


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## Tesscorm

Glad apptmt went well.  Hope the need for surgery can be avoided or, at the very least, postponed for a long time!

And, hopefully, you do see the HR issue pass with his continued PT.  I know doctor told you not anemia related but just for reference (since the topic came up...), I posted a pretty decent article on Iron and the different testing on the Kids' research thread.  I need to read it a second (possibly third time) to really get it straight in my head but, it was relatively 'easy' to understand.


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## Clash

Thanks Tesscorm! I 'll read through the link. Hr went through several scenarios involving iron studies and then vitamin b and anemia of chronic disease and it seems two more he said C didn't fall near the parameters for any of them. He also discussed ferritin and how it can be a marker for inflammation and how that can skew results of something else but I don't remember all the details so that link will definitely help me get it all straight in my head.


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## kimmidwife

Clash,
Glad to hear the appt went so well. That is awesome news! May it only continue! Our follow up is in four weeks too so I will be hoping both our kids continue to do well!


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## DustyKat

That is so brilliant about the job Clash! 

	
	
		
		
	


	




 Well done C!

It is also wonderful to hear that the appointment has gone well, so happy for you and your boy. :hug: 

Couldn’t agree more with the sentiment that is far better to go into surgery on your own terms. Makes for a much better outcome and recovery.  

:mademyday: 

Dusty. xxx


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## Sascot

That's a great update. Hope things keep going well on the EN and Metho. 
Congrats on him getting the job - a big boost for his confidence! Hope he enjoys it.


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## Clash

Update:

Today is C's third day on the job, he is loving it so far. I can tell he is worn down but this is literally more than he has done in a year or more. We are still doing EN, well except for this morning when I told C I would refill the bag and ended up trying to pour the formula into a bag that was closed! Ughh.. instead of waking him up to disconnect so I could change the bag I just cleaned up the mess and went back to bed. So when he got up he got all but one of the cans in that he had missed before going to work.

He hasn't complained about his heart rate, I've ckecked it a couple of times and it has been normal so not sure what that was all about. We are supposed to be scheduling with an ped. EP cardiologist but C is wanting it to coincide with next GI appt so we don't have to make the two hour drive twice.

PT is going well, mainly because the C thinks the PT is hot so he volunteers for longer swimming...ha teenage boys.

I'm hoping that the rigors of the new job don't pull him down but for now he is happy and is really enjoying it so we will just have to see how it goes.

His English proxy contacted me last week and C is tied with another student for the highest average in the class. I worry that he is gonna let school slip with the new job but so far so good.

Hope everyone is doing well!


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## Tesscorm

Wow, what a great update!! :thumright:


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## DustyKat

Thanks for the brilliant update Clash! :dusty::dusty::dusty: 

I am so happy for C that all is going well and long may it continue! Happy for you too mum. :ghug: Onwards and Upwards! 

:mademyday: 

Dusty. xxx


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## Sascot

Great update. Glad things are going well!


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