# Less than ecstatic



## AZMOM (Feb 6, 2013)

I have far less to deal with than so many of you that I hate to complain.  So........I'll just whine I guess.  

Called Rheumatology because Claire is nearly refusing to use her right hand, crying etc.  The consensus between the GI and the Rheumatologist is that since all her numbers are good EXCEPT fecal calprotectin (crept back to 577) and some borderline anemia that the joint pain is secondary to the gut problem.  

GI put the kabash on EN because he feels it is most effective for small bowel disease and Claire's has always been "diffuse".  After some debate we agreed to a 5 day "burst" of steroids and a bump in methotrexate since she's 85 pounds.  

The black dog, Dusty, is sniffing around my porch.  :ack:

Love you all - hugs to all of us that would take it all away from these kids in a MINUTE if we could.

J.


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## my little penguin (Feb 6, 2013)

Hugs
Don't apologize for posting
We all have issues and when its your kid well its important .
Hope the Mtx bump and steroid burst help.
Poor kiddo


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## Tesscorm (Feb 6, 2013)

Absolutely what MLP said...  we're all here to support one another, big or small! :ghug:

Sorry that Claire's having to deal with this!   I hope the steroids and increase in metho relieve her pain quickly!!


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## Farmwife (Feb 6, 2013)

Tell your girl there's a 4 yr old in Michigan that knows how she's feeling.
I hope you find meds to make her pains go away.
Who would have ever thought that our young ones would have more joint pains then us.
Hugs


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## Dexky (Feb 6, 2013)

J, I wonder if Dr. A ever prescribes EN?  He said we could try it …but!!  He's just not on board with it seems to me.  Hope Claire feels better soon!


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## AZMOM (Feb 6, 2013)

I think he is on board when he thinks its clinically appropriate.  We had discussed it as an option in the past. He did not, however think it was appropriate this time. Sigh.....

J.


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## Jmrogers4 (Feb 6, 2013)

This is where we come to whine and everybody understands, she's in pain and you want to fix it.  I don't think that is whining.  Hope the "bump" takes care of it.


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## Patricia56 (Feb 6, 2013)

Whine away. I'll bring the cheese and crackers. The chocolates are for me however.

Regarding the EN. Um. 

A certain rebellious parent who shall remain nameless has been known to do what she felt best when she was certain there wouldn't be any negative ramifications from doing what she felt best. In defiance of a (or maybe more than one) doctor.

IE - I'd try EN using OTC products anyway. Should know if it will make a difference in about 2 weeks.

Could do it with the pred or after the pred if the symptoms don't resolve.


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## Twiggy930 (Feb 7, 2013)

Hoping the meds get her feeling better soon.  Watching your kid in pain is just heartbreaking.

:ghug:


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## CarolinAlaska (Feb 7, 2013)

I had my pity party yesterday.  I'll come to yours today, if I'm invited  !  

I'm sorry your dd has to have pred.  I hope she gets better quickly and stays that way.


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## AZMOM (Feb 7, 2013)

Come on over, CarolinAlaska. I've got plenty of room for us all.


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## Farmwife (Feb 7, 2013)

:ywow:Hey if theirs a pitty party can I come. :biggrin: I'll bring the cookies and punch (non-alcoholic).


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## Dexky (Feb 7, 2013)

I'll bring the REAL punch


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## AZMOM (Feb 7, 2013)

I think I'm ready for a glass of REAL punch.


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## QueenGothel (Feb 7, 2013)

I hope the bump up helps too! We are with you! My avatar speaks for itself.  I usually supply a different kind of punch. :biggrin:  since I am one of "Those moms." Keep us posted. I hope her arm quits hurting her. Poor kiddo!


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## Jmrogers4 (Feb 7, 2013)

I'll take some "real" punch and some of farmwife's cookies.  Partytime!!!


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## AZMOM (Feb 7, 2013)

Call from the school. Chest pain (heartburn). Doing Prilosec with the steroids but not a great sign after 2 doses. Sigh...... Minor.....yet not......

J.


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## crohnsinct (Feb 7, 2013)

Did someone say wine??!!!  Oh right whine 

J - really whine away.  It is totally justifiable.  So hard when you are sailing along and hit a setback.  I think we all suffer a bit of PTSD.  Setbacks bring us to THAT place.  And we will all go there with you!  We travel as a pack good or bad!  With wine, punch and cookies of course!  

I really hope the burst works out.  Poor pumpkin.


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## CarolinAlaska (Feb 8, 2013)

AZMOM said:


> ILove you all - hugs to all of us that would take it all away from these kids in a MINUTE if we could.
> J.


When trying to get Jaedyn to try inserting the NG tube again, I asked her if it would help her if I got one and did it with her.  She looked at me in amazement, and said "You would do that?!"  I told her I would if it would help.  Then she said no.  She wouldn't try it again even if I did it too.  Wish I could have done it instead of her.

Patricia, I read that you have chocolate and you're keeping it to yourself.  Is that milk chocolate or dark chocolate?  If it is dark chocolate, I might have to wrestle you for it!  But if you won't share it, you better not bring it to the party... could be dangerous! 

Carol


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## Crohn's Mom (Feb 8, 2013)

Awe man J ~ I'm late to your whining party ! 

How's Claire's heartburn today ?
Poor little love.
Is the Pred helping with her hand pain yet ? Or anything ?

:ghug:


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## Patricia56 (Feb 8, 2013)

That would be milk chocolate Carol.

But I suppose I could be persuaded to bring some of that dark stuff too.

I might even be convinced to share the milk chocolate.

But it would take a lot of convincing since it would definitely include those chocolate cream filled ones, chocolate turtles and those fabulous chocolate drenched coconut ones from Sees.


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## Jmrogers4 (Feb 8, 2013)

I love Sees!!!!  We did not have a store for many years here and of course this was before internet, so we would get the "BIG" box from family in California every year for Christmas.  I don't think the box ever made it to Christmas day


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## CarolinAlaska (Feb 8, 2013)

Patricia56 said:


> That would be milk chocolate Carol.
> 
> But I suppose I could be persuaded to bring some of that dark stuff too.
> 
> ...


You're in no danger from me if you stick with the nasty sweet milk chocolate.  Give me the pure, rich dark chocolate that goes straight to the veins!  Lol:ytongue:


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## Patricia56 (Feb 8, 2013)

Well given all those years of deprivation I guess I would be willing to share some chocolate with you JM.

Sounds like I am going to have buy at least a 5# box.

So we would have chocolate, wine, crackers, cheese and two kinds of punch plus some cookies.

If we're going to be really self-indulgent I think we should also have some creme brulee.

Who wants to use the torch to melt the sugar on top?

We could also use the torch to light a fire under a doctor or two or maybe burn an effigy labeled Crohn's. What do you think?


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## Patricia56 (Feb 8, 2013)

Wonder if the effigy would burn long enough to toast marshmallows...


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## CarolinAlaska (Feb 8, 2013)




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## crohnsinct (Feb 8, 2013)

Marshmallows?  Chocolate? Fire? 

SMORES!  You in Dusty?


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## Sascot (Feb 8, 2013)

Ooooh, me, me, me!  I want to join in with all that yummy stuff.
Hoping the heartburn is easing off and she is feeling a bit better!


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## AZMOM (Feb 10, 2013)

Dr Dusty - pain just under rib cage on right??? Only thing I can think of is liver. Any ideas?

J.


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## Crohn's Mom (Feb 10, 2013)

J is she having any urinary/kidney  symptoms ? That could cause a pain there. 
Poor Claire


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## AZMOM (Feb 10, 2013)

Not really, T. Complained today of mid-back pain, neck, ankles, etc etc etc


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## CarolinAlaska (Feb 11, 2013)

Liver inflammation, maybe, but could also be gastritis, ulcers, reflux, gall bladder, gas pains... Lots of things there.


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## CarolinAlaska (Feb 11, 2013)

For what it's worth.  I know it sounds wierd and I don't understand it, but my daughter has found a very helpful, nontoxic thing that helps with her joint pains.  She puts an oil on her knees when they are inflamed.  It is called geranium oil and both times she used it, it took the pain away within minutes.


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## Dexky (Feb 11, 2013)

Sorry to see she hasn't got much better J!  How were her latest bloods?  When's her next appt.?


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## AZMOM (Feb 11, 2013)

Dex - latest labs were decent with the exception of her fecal cal. Checking everything again in about 1 1/2 wks. Im sure it was way to quick to be of significance but she had her increased dose of methotrexate this weekend. Im sure Im worried about her liver and this "new" complaint put me on high alert. 

It had only been a few hours so Im sure Im unjustifiably paranoid. 

Claire told me yesterday she feels like a "walking pile of poop". I told her at least she doesn't smell like one. . How's that for bad parenting???

J.


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## Jmrogers4 (Feb 11, 2013)

:rof: I would have said the same thing.  Hope she is feeling better and it is just something minor


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## Crohn's Mom (Feb 11, 2013)

J that is so funny !

:heart: ya ! 
Hope it's something easily remedied :hug:


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## my little penguin (Feb 11, 2013)

:ghug:
Waiting when they feel like poop even walking poop 
Is just hard.
Hope the pred improves things soon for her.


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## AZMOM (Feb 11, 2013)

Thanks MLP. Last dose of the "5 day blast" was today. Im decidedly discouraged.


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## AZMOM (Feb 12, 2013)

At outpatient for labs. Abdomen distended. Says it "hurts when I breathe". 

Sigh


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## Jmrogers4 (Feb 12, 2013)

praying for you and Claire, hope everything is okay.


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## Crohn's Mom (Feb 12, 2013)

Oh no J ! 
Please let us know when you can


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## AZMOM (Feb 12, 2013)

ESR AND CRP are fine.  WBC high at 15.7.  Urine had some protein but other than that, normal.  Chest xray normal.  LFTs are fine.  Pediatrician's theory is that it's just something viral so she feels "crappy".  

He said that because she's "complicated" (understatement of the century lol) that if she gets any worse and he were me, he'd just drive her to the ER at Vanderbilt.  

And folks....there you have it.....

J.


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## Crohn's Mom (Feb 12, 2013)

So with the high WBC did they prescribe her antibiotics? 
I'm confused - how do they determine "viral" with a high WBC?
Is it possible she has caught her brothers virus ? 

Big hugs - poor kids! And momma J!


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## Jmrogers4 (Feb 12, 2013)

She's not "complicated" as farmwife would say, she is just an overachiever


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## AZMOM (Feb 12, 2013)

Hell, T, I don't know.  He did not prescribe her anything and while we were in the office said he's not comfortable throwing drugs into Claire without a clear picture.  I appreciate his honesty but I'm at a loss.  I have a kid who's hardly functioning who's usually hell on wheels.  And, she has never really perked up with the prednisone this team.  It all adds up to a nervous Mom.

I emailed the GI nurse with what he said about Claire and also the ER advice.  I told her I avoid ERs unless I think we're circling the drain and that I'd touch base with her tomorrow.  I'm hoping her doc will be back in - apparently he's sick too!!!!

Oldest child dx today was pneumonia - walking.  He's afebrile.  I'm mystified by that one because he is sick as a dog.  Claire isn't coughing.  NO signs of upper respiratory issues.  

What will tomorrow bring?  Thunder snow?  Indoor outbreak of poison ivy?  Full blown anxiety attack for Mommy?  Sasquatch discovery? Trips to the liquor store?  This day, surely hasn't been weird enough?????

J


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## my little penguin (Feb 12, 2013)

Hugs...
Hope the Gi gets back to you soon.
More than once we have gotten the your kiddo is complicated " so I don't know what to do " drug wise speech .
Last time it was just strep.
Hope her "virus" leaves soon.


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## AZMOM (Feb 12, 2013)

Hey MLP & T - Just to add to the funhouse, pneumonia kid shouts from the xbox "Moooooo-oooooooooooommmmmmm can you check my temperature again?"

He's no longer afebrile. :mad2::mad2:  101......

Gotta keep laughing......here's to complicated kids.

:heart: J


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## Crohn's Mom (Feb 12, 2013)

I vote for the liquor store ! 

And just wanted to tell ya - the first time Gab ever had pneumonia she had ZERO respiratory signs. I took her to the ped because she just wasn't feeling good, and kind of lethargic. 
When I opened the car door to get her out she ended up vomiting in the parking lot. 
Took the doc just a few minutes to tell me she had pneumonia! I was shocked :/ 
Hopefully the GI gets back to you soon and Claire doesn't get worse


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## Dexky (Feb 12, 2013)

AZMOM said:


> Hey MLP & T - Just to add to the funhouse, pneumonia kid shouts from the xbox "Moooooo-oooooooooooommmmmmm can you check my temperature again?"


Probably didn't even miss a beat with his game, did he?

Wow, you guys are getting more than your share J!  I hope C's problems are just some bug.  Lord knows there's enough of 'em going around!


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## CarolinAlaska (Feb 12, 2013)

A white count of 15 isn't unusual with kids who are on prednisone.  Were there a lot of lymphocytes or neutrophils?  Maybe it was a reaction to the MTX?  Hugs and prayers for both of you and your dear son too.  I hope they both make a quick turnaround.


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## AZMOM (Feb 13, 2013)

Thanks Carol. Her 5 day "blast" is over but makes sense to me that it would still be elevated. The concern that started it all was the school called because she had a fever and when I say the child could barely put one foot in front of the other - Im not exaggerating. I hope this is a one time event and not how wiped she's going to be with the increased MTX dosage. 

Last night she was still complaining that deep breäths hurt her abdomen and she can hardly stand for anyone to touch her belly. I don't get it. 

I hope today is MUCH BETTER for everyone. 

J.


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## CarolinAlaska (Feb 13, 2013)

Aw, J, that sounds terrible.  Poor girl! I hope to day is much better too.  Is she passing gas and pooping?


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## AZMOM (Feb 13, 2013)

Oh yes. The bowels are working just fine.


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## Tesscorm (Feb 13, 2013)

So sorry Claire's going through so much! 

I hope today brings some relief and improvement! :ghug:


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## Crohn's Mom (Feb 13, 2013)

How are Claire and Hunter feeling today J ?


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## my little penguin (Feb 13, 2013)

Hugs hope she gets a break soon


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## AZMOM (Feb 13, 2013)

She's ba-ack!  Literally!  Like someone flipped a switch! Her joint pain is virtually nonexistent.  Belly still tender but improved.  Im so thankful!

Now - it will be interesting to see if we have a repeat with the next dose Friday. I will be happy for today!!!

Hunter's fever is gone, T. Still doi g a lot of coughing and having chest/back pain. Im praying Claire has no part of this pneumonia!!!!!

J.


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## Jmrogers4 (Feb 13, 2013)

Glad she is feeling better!
:yoshijumpjoy::yoshijumpjoy::yoshijumpjoy:anda:anda:anda:


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## Crohn's Mom (Feb 13, 2013)

Whew!! 
Crisis (sorta) averted ! 


 HD


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## my little penguin (Feb 13, 2013)

Yippee!,,
Hope it's not the increased mtx.
Ds had horrible fatigue with mtx for two to three days.


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## AZMOM (Feb 13, 2013)

Yeah MLP, Im a little twitchy. She hasn't really had that but something's different....,


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## ALotToLearn (Feb 14, 2013)

Glad things are better for you.  If you don't mind me asking a question, our GI is recommending a switch from 6mp to MTX.  I see you had done 6mp and allopurinal.  Was the allopurinol added due to 6mp not getting to therapeutic levels?  Did that not do it either?  We haven't tried adding allopurinol yet but I'm pushing for that before switching to MTX.  My son plays hockey and if the mtx is wiping out your daughter like that I really would like to avoid it.


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## my little penguin (Feb 14, 2013)

Allpurinol is added to devert more of the 6-mp from the liver and to the body instead.
My son had high liver levels so 6-mp + allopurinol was added to see if enough could be diverted away without getting too much in the rest of his system.
Gi cut his 6-mp dose to 1/4 of what it had been .
This caused his liver levels to go back to normal.
But also decreased his 6-mp levels.
We tried to increase his 6-mp levels but this raised his liver numbers again.
This led to lower the 6-mp again which left him with symptoms.

So for DS after playing switch the dose for 4 months all the while DS being miserable we decided to try Mtx.
Our theory was we wanted DS to completely FAIL 6-mp before we moved on to the next drug.
On paper this is good but having a kid still in pain well.....
Mtx was tried with pred to give the Mtx time to build up in his system.
He did have fatigue with it. But not every shot.
He was also weaning pred so not a good comparison.
He was never able to get below 20 mg of pred without having increased symptoms. For DS this included vasculitis - which can be dangerous.
After eight weeks it was agreed to start remicade in order to wean him from pred.
You give the Mtx on Friday to avoid the side effects during the week.
Also most have no side effects especially if folic acid is taken.
The goal is to get to a healthy kid.
Unfortunately how each kid reacts to a drug can't be known until they actually try it out.
Wish it was easier .
Hugs


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## AZMOM (Feb 14, 2013)

Okay ALoTtoLearn.......

Yes, Claire could not get to a therapeutic level on 6MP.  Even after a year.  She became symptomatic and liver numbers on a dramatic rise.  So, the GI recommended the Allopurinal/quarter dose of 6MP.  As MLP explained so well, the idea is to change how it's metabolized.  There is still a little danger in that.  For Claire, it shut her bone marrow down and she quit producing red blood cells at all.  Because she's such a trooper, she was critical low (hemoglobin 5.1) before we figured out what was going on.  SOOOOOOOOO - my advice if you go allo/6mp route when you start is weekly or at least bi-weekly labs at least and to err on the side of caution if you suspect things are amiss.  Do I regret giving it a shot?  No.  I regret not asserting my suspicions when she started acting tired between routine labs.  Don't let my story make you afraid.  

With the MTX, she has been on 0.6 ml/25mg vial injections for about 20 months and done relatively well until recently.  No significant side effects other than an occasional headache relieved by Tylenol.  Last weekend we increased to 0.8 ml/25mg vial so I'm trying to decide if that's what wiped her out early this week.  I erred on the side of caution for early labs since she was acting funky.    It is one of those time will tell things......I will let you all know how this weekend goes.  

MLP - I'm sure you've heard me say it before but I so wish we could try a biologic!!!!!  

Big hugs,

J.


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## my little penguin (Feb 14, 2013)

Hope the Mtx does not give you a repeat performance this weekend.
Hugs.


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## Sascot (Feb 15, 2013)

Hope things keep getting better and the Methotrexate doesn't make her too tired again this weekend.  Life's never simple is it


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## Dexky (Feb 15, 2013)

Good to hear they're both getting better J!


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## AZMOM (Feb 16, 2013)

Shot last night. Felt good but pale this AM. Overindulged her with a Justice shopping spree for about an hour. Now for the last four hours, this is it.....



Comments? Does 2 weeks a trend make? I don't know.....


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## my little penguin (Feb 16, 2013)

Two weeks- 2 Points makes a line .at least in data analysis.
A true trend can only be seen after three or four .
However 
Given she is a kid I would talk to your Gi and maybe based on their experience 
They can say yep btdt with other kids time to try something else or adds xyz kwim.

Can your Gi try a lower dose but higher than her usual ( like 0.7??)
Hope the rest helps


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## Jmrogers4 (Feb 16, 2013)

She is out, hope you get it all worked out, I honestly can not remember if Jack was extra tired with MTX or not just remember the awful cough.


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## Dexky (Feb 17, 2013)

No experience with MTX but I do remember in talks with Aura about it, she would always mention being wiped out by it.  Hi K!!


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## DustyKat (Feb 23, 2013)

Hey J...:hug::hug::hug:

I have missed so much, I'm sorry.  

I agree with Dex re the Meth. I have read of Aura and others experiences on here with it and for some the day or two after was a wipe out.  

Harking back to the EN. Although it does appear that small bowel disease responds best to this treatment there are reliable studies, don't ask me to pull them up now! :lol:, that contradict this and have found that large bowel disease responds equally well. Whether it works for UC is what still seems to be stumbling block. 

How is Claire doing now? 

In my thoughts, :heart:
Dusty. xxx


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## Brian'sMom (Feb 26, 2013)

J, Do you know if there is different side effects with MTX injections vs the pill form? How is Claire doing lately? It'd be hard to see your bundle of energy sleeping when she normally wouldn't be. I hope its all evened out.


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## AZMOM (Mar 1, 2013)

Kathy - there can be issues with absorption with the pills. We heard that back in the arthritis days too and that was before the gut issues. Both rheumy and GI agree that the injections are her best chance. 

Last weekend, the malaise was marginally better but still noticable. 

Labs this week look good overall but she has had SIGNIFICANT bleeding today. 

Sigh........

J.


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## Crohn's Mom (Mar 2, 2013)

:ghug::ghug::ghug:


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## AZMOM (Mar 3, 2013)

Thanks T.  :dance:

Up early while all the chillins are sleeping in..... Praying for a blood free, pain free, post methotrexate headache and nausea free Sunday......we'll see what I get!

J.


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## my little penguin (Mar 3, 2013)

:hug: hope you get your wish

Well Vibes your way


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## Jmrogers4 (Mar 4, 2013)

So... did she have a good day yesterday?


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## CarolinAlaska (Mar 4, 2013)

How's she doing?


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## AZMOM (Mar 5, 2013)

Thanks for checking. We are 14 days from MRE and 17 days from appt. Im sitting on my hands to keep from dialing the doc. 

We are seeing daily blood. Her counts last week were good though. And she bounced back better from the MTX this weekend. 

Here's a question for you all. Do your kids complain of pain under both sides of their ribs ever? She complains it hurts when she takes deep breaths. At first it was a rt side complaint now it's bilateral. 

She is adamant about not wanting prednisone. Not sure we're gonna dodge it this time. 

J.


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## Tesscorm (Mar 5, 2013)

Sorry she's not doing better...   I hope the MRE gives you some answers. :ghug:

Stephen's never had pain like you describe...

Lots of hugs :ghug: :ghug:


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## AZMOM (Mar 5, 2013)

Thanks Tesscom. I was reading online and I have an irrational fear of lupus. Not sure I've ever shared that on here. Anyway she has some + antibodies (ANA, Smith, etc) that are usually consistent with lupus. She's just never shown signs. So when I was reading about pain with deep inspiration I started getting paranoid. 

Whew. Now that I said it out loud, surely we aren't heading down that road. 

On doc day we see both rheumatology and GI so Im going to pick the rheumys brain. He's fabulous. 

J.


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## Tesscorm (Mar 5, 2013)

I just searched back to one of my old threads...  my daughter was having some issues (all started with some pain in her pinky! :yfaint, one thing let to another and our GP tested her ANA level.  It came back slightly high!  and she was referred to a rheumi.  I was also worried about Lupus (and I believe RA can also cause a higher than normal ANA)!

In the end, after additional testing, there was no RA nor Lupus...  rheumi explained that it is not unusual for someone to have a slightly elevated ANA if an auto-immune disease is present in the family and that this does not mean that they have or will develop lupus!  :ghug:

Useless to say, I know :ybatty: but...  try not to worry too much until you can get some answers! :hug:


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## AZMOM (Mar 5, 2013)

Thanks. 

Yes I understand about the ANA. Claire was rheumatoid factor positive too along with the ANA at time of arthritis dx.  Sigh. The concern was primarily due to the anti-Smith and another one whose name is escaping me. I'll have to look it back up. 

J.


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## my little penguin (Mar 5, 2013)

Ds has /had pain under his ribs .
Asthma / crohn's /just being DS 
Who knows - so far my head is in the sand on that one.


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## CarolinAlaska (Mar 5, 2013)

I'm sorry she is still having blood.  Is her rib pain worse after a meal?  I know some meds can cause pancreatitis which organ is bilateral...  Just throwing that out for what its worth...


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## AZMOM (Mar 5, 2013)

I wonder too CarolinAlaska. This morning it was within 5 mins of breakfast. It subsided and I took her to school. I know she wasn't angling to stay home because she was all dressed up in a new outfit complete with sequins on her skirt and flower in her hair to help lead the pledge at school. She took off her shoes, got in my bed balled up in the fetal position. 10-15 mins later she got up. Said it was bothering her but she didn't want to miss the pledge - God love her.......


J.


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## AZMOM (Mar 5, 2013)

Gotta love watchful waiting.....NOT SO MUCH......


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## Dexky (Mar 6, 2013)

I hope the pain's just a memory this morning!  Did she stay at school all day yesterday?  I'm sure she did, you'd have said otherwise.  Hoping for a quiet day Julie


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## AZMOM (Mar 6, 2013)

Thanks Dex. We stay at school unless there's a fever. I sound like nazi-mom but Im trying hard to not keep her home for months whenever aomethinfs brewing. Since its still only 1-2 stools a day, Im sending her. And she LOVES school. 

J.


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## Dexky (Mar 6, 2013)

Has the arthritis pain improved?


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## AZMOM (Mar 6, 2013)

Left hand resolved with steroids. She mentions it occasionally but she's using it normally so I've put that worry on the back burner.


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## Dexky (Mar 6, 2013)

God bless ya J!  I know you've got enough!!


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## AZMOM (Mar 6, 2013)

Okay. I emailed the doc just now. Sitting on my hands wasn't working. At least I'll know he knows what I know until we see him in a couple of weeks. Dex - EJ must not be keeping him busy enough so Claire feels compelled. 

J. 

PS my email will probably guarantee she bounces out of bed in about 20 mins without a care in the world. Ooohhhhhhh I hope so.


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## ALotToLearn (Mar 6, 2013)

Hi J,

I had questions for you a couple weeks ago regarding your experience with 6mp and allopurinol.  In any event, my son had the pain you described about a month ago.  I was worried the 6mp was causing pancreatitis since he always seems to have every potential side effect listed with the various meds.  In fact I make sure not to review the side effects with him because I don't want to plant anything in his mind.  The first time he just acted like it was more flu like stomach discomfort.  It would be there for a bit, then 15 minutes later he'd feel fine.  A day later he doubled over at breakfast with pain right where you describe under the ribs.  Again, by the time we had to go to school he was fine.  A couple days later tried to play a hockey game, but said it felt like his stomach was on fire so I had him ride the bench the rest of the game(in addition to being Dad, I'm also coach).  By the time the game was done he was ok.  I asked the GI about pancreatitis so they tested LIPASE which was normal.  Pain was usually right in the middle under the ribs or more to the left side under the ribs.  He also mentioned that it hurt to take a deep breath.  That seemed to go on for a week or two and now I haven't heard about it for a couple of weeks.  The only advice the GI nurse gave me after he tested normal for pancreatitis is keep a log of when he eats and when he experiences pain.  Of course, now it isn't happening?  Hopefully that's the outcome for your daughter as well.


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## AZMOM (Mar 6, 2013)

Thanks ALotToLearn!  That helps.  She complained less of the ribs today because she was limping around.  Are we having fun yet????  NO!  I appreciate you sharing though.  *Did I miss your 6MP/Allo questions???  I hope not!  Please let me know.  *

Okay antibody geeks (MLP & Dusty - I'm picking on you! :kiss  I pulled Claire's comments from the positive antibodies from last year.  The consensus at the time from the docs was "We are all aware these are positive but aren't going to worry unless things change."

ANPcom: - _Scleroderma (SCL-70) Antibody is seen in 20-60% of  patients with scleroderma; 70% in diffuse scleroderma  and less than 10% of patients with CREST.  - SSA (Ro) Antibody is seen in 70-75% of Sjogren's  syndrome and 30-40% of SLE patients.  - SSB (La) Antibody is seen in 50-60% of Sjogren's  syndrome and 15-25% of patients with SLE.  - Smith Antibody is very specific for systemic lupus  erythematosus (SLE) but only occurs in 15-20% of SLE  patients. _

I really do not worry all the time until she comes up with crazy new complaints!

J.


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## Crohn's Mom (Mar 6, 2013)

:hug: J !

I have nothing for you re the antibiodies :lol:
Just want to say I hope the pains settle for your beauty, and you get some answers very soon!


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## ALotToLearn (Mar 6, 2013)

*Did I miss your 6MP/Allo questions???  I hope not!  Please let me know. * 

No, you answered my questions.  Looking back that was almost a month ago.


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## AZMOM (Mar 6, 2013)

GI wants to go ahead and check for c-diff.  I'm pretty certain she's not positive but it never hurts to check!

I told my husband to get his spoon ready.  :rof:

J


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## my little penguin (Mar 6, 2013)

Trick we learned - hat plus lined with Saran Wrap - much easier transfer less mess


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## AZMOM (Mar 6, 2013)

Love the saran wrap idea!  Go down to my antibody disseration, MLP, I've been waiting for your brain.


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## my little penguin (Mar 6, 2013)

as fun as that sounds ( yes I am a geek!) :tongue:
my house needs help first.
LAter


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## Crohn's Mom (Mar 8, 2013)

How's sweet Claire today momma J ? :hug:


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## my little penguin (Mar 8, 2013)

I will try and search for you later when I get a full keyboard


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## AZMOM (Mar 8, 2013)

Ironically a pretty good day. I can't get a stool sample. She had three bouts of diarrhea yesterday between school and my mom's but nothing at home. We're out eating dinner right now so that oughtta do it . 

J.


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## Crohn's Mom (Mar 8, 2013)

I like to hear it's a good day ! :ghug:


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## AZMOM (Mar 9, 2013)

Yep. Dropped the "present" off this morning. I'll let you know what I hear.


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## Farmwife (Mar 9, 2013)

Isn't funny what we see as presents.

Glad to hear it's all done.

HUGS


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## CarolinAlaska (Mar 9, 2013)

I'm glad to hear she had a good day.


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## DustyKat (Mar 12, 2013)

Hey J...:hug: 

Sorry I have been AWOL.  

Any news? 

Dusty. xxx


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## AZMOM (Mar 14, 2013)

Back from the Windy City. Good news is fecal calprotectin somewhat improved - 310. Mixed news is c diff results say "toxigenic c diff detected". Im waiting for a call from the doc. Not sure if the antigen is something you always have if you've had an infection in the past? Or does she have an active infection?

Thoughts????? I'll post when I hear back. 

J.


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## Tesscorm (Mar 14, 2013)

Hope it's just an indication of past infection! :ghug:  And glad you're seeing improvement in the FC!


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## AZMOM (Mar 14, 2013)

Well she's positive. Starting flagyl today.


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## Farmwife (Mar 14, 2013)

I asked the same thing a year ago to to the Infectious Disease Consultant.

Here's their answer

Yes/No

Yes if OBVIOUS SIGNS of a c diff infection then the test might be right.
No if their is no sign.

BUT...I said she has problems in the bathroom anyways. How can I tell the difference?

They said her inflammation markers would be up. I didn't ask what ones because I still had no idea what she had.

Call you call the IDC and get a phone consult?


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## Farmwife (Mar 14, 2013)

I would still do the flagly because you don't want to take the chance it is c diff.


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## AZMOM (Mar 14, 2013)

I spoke with the GI. She is positive and symptomatic so we are processing as such. 

Thanks. 

J.


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## Crohn's Mom (Mar 14, 2013)

Ugh  
Sorry she's positive - hope the flagyl does the trick!
:hug:


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## my little penguin (Mar 14, 2013)

hugs


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## Dexky (Mar 14, 2013)

Sorry to hear it J!  I hope the flagyl helps quickly!  Is she still having joint pain too?  Could cdiff have any effect on RA?


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## Brian'sMom (Mar 14, 2013)

Julie, when you say symptomatic, did she ever start going more than twice a day? When Brian had first bought of C Diff he was going like 9+ times a day (in December.) His inflammation is creeping up last 3 labs(3 mos).  I asked doc yesterday if this could be C Diff cause he's going 1-2 times a day...but always begins with a bit of Diarrhea/gassy then ends with logs. She said if he's having the logs and only 1-2x then its not C Diff. She also said they will not test if its not Diarrhea. I asked...why not? She said, they just won't. I noticed that you said Claire was only going 1-2 times also.

Thanks Julie for taking time to answer my question when you are going thru a lot yourself. HUGS!!!! And I hope the Flagyl helps her quickly


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## AZMOM (Mar 14, 2013)

Kathy - you're a sweetie. . She's going a couple of times a day. But sometimes 4-5. New onset of bleeding. Random low grade fevers. 

That about covers it. Lol. 

Claires doc doesn't always check for c diff when she has bleeding but I had emailed him because things were "different" than usual. 

Dexky - good question. Her wrists are really bothering her tonight. I'll have to do some reading. 

Hugs. J.


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## AZMOM (Mar 16, 2013)

Day 3 of flagyl - she still seems way tired but somewhat better. Hoping to get out in the sunshine this weekend. We all need some springtime!

At this point we're proceeding with the MRE Monday. 

J.


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## my little penguin (Mar 16, 2013)

good luck monday!!!


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## Dexky (Mar 16, 2013)

MRE at Vandy J?  or here?

I hope she enjoys the sunshine!


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## AZMOM (Mar 16, 2013)

Vandy, Dex. We don't do MREs here yet.


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## Dexky (Mar 16, 2013)

Well aren't we just the podunk town!!


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## AZMOM (Mar 16, 2013)

Not enough peds specialties!


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## DustyKat (Mar 16, 2013)

Good Luck for Monday J! :goodluck: 

Dusty. xxx


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## AZMOM (Mar 16, 2013)

Anybody's kid get orange urine from flagyl?


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## Brian'sMom (Mar 16, 2013)

AZMOM said:


> Anybody's kid get orange urine from flagyl?


Yes! Brian did. Every time he was on it too. They told us to expect 'Dark Urine"


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## DustyKat (Mar 16, 2013)

Matt never did but we were warned! 

Dusty. :heart:


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## CarolinAlaska (Mar 17, 2013)

Never heard of that.  Good to know.


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## Twiggy930 (Mar 17, 2013)

My son had dark urine while on Flagyl.  Good luck tomorrow.


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## Crohn's Mom (Mar 17, 2013)

Good luck tomorrow !! :heart:


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## Farmwife (Mar 17, 2013)

Grace had the same urine.

I'll be thinking of you guys. Hope all goes well.


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## CarolinAlaska (Mar 18, 2013)

Is she drinking the stuff or by NG tube?  I hope it goes well.  Be forewarned that an IV is involved.  We weren't prepared for that...


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## Crohn's Mom (Mar 18, 2013)

thinking of you girls ! :ghug:


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## AZMOM (Mar 18, 2013)

CarolinAlaska - she drank it. All. In an hour instead of two hours. The girl is a machine - god love her. 

T - It all went well. 

J.


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## my little penguin (Mar 18, 2013)

Glad it went well


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## Brian'sMom (Mar 20, 2013)

She's so tough!! Glad it wasn't hard for her! Did MRE give some answers?


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## AZMOM (Mar 20, 2013)

Got the online report today. See the doc Tursday. No evidence of obstruction or narrowing. So that's GREAT. I didn't expect her to have that anyway but it's good to know. I'll pick her labs up this afternoon. 

I guess I expected more detail than "ruling out" but am realizing now that's silly. Im used to what's seen on scope vs impression of the "outlines". Does that make sense?

J.


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## Brian'sMom (Mar 20, 2013)

Yes, it does make sense. Our GI likes it for small bowel info...ruling out narrowing.


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## AZMOM (Mar 20, 2013)

Yeah, Kathy, Im a newbie on the one. First MRE.  

I'll let y'all know what he says tomorrow.


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## Niks (Mar 20, 2013)

She did do well drinking it all!!

Good luck for results tomorrow xx


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## AZMOM (Mar 21, 2013)

Well she spoke up for herself re her pain. So now we're scoping again to get a look at the left side pain that so rarely subsides. That was GI

Rheumy sees active inflammation in hand and fingers on one side. And excess fluid in hips. However no hip joint loss of motion etc. 

J.


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## Crohn's Mom (Mar 22, 2013)

J I'm sorry that Claire is finally able to speak for herself and describe her pain 

Does that sound stupid ??
I doubt it ~ I know you get it ! :ghug:


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## Dexky (Mar 22, 2013)

When are the scopes J?  I'm so sorry for her!!


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## kh216 (Mar 22, 2013)

Just want to send a hug and a shout out to all you parents of children with Crohn's Disease. It breaks my heart to hear of young childrn suffering from this and I know you parents try EVERYTHING to help them. I can see that many of these children have been on multiple medications and have probably seen a lot of doctors.


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## AZMOM (Mar 22, 2013)

Dex - April 12 or 19. They're supposed to let me know. 

Part of me thinks they're not necessary and I have an irrational fear of everything in there being "fine". Please note I said lRRATIONAL.


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## Tesscorm (Mar 22, 2013)

I'm so sorry that Claire is dealing with pain! 

Can the rheumy do anything to lessen the pain/inflammation?  I hope the scopes give you some answers!  Wish they could be done sonner.

:ghug: :ghug:


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## my little penguin (Mar 22, 2013)

Does she have a TENS unit to help relive the pain for a bit to give her a "break" and a little more control until the scope?

DS has one- it didn't get rid of the pain at times- but definitely helped him deal with it.


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## AZMOM (Mar 22, 2013)

Good though MLP. No we don't have one!


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## my little penguin (Mar 22, 2013)

your gi or rheumo can prescribe it- too second training and a nine volt battery and your set.


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## Crohn's Mom (Mar 22, 2013)

TENS machines are awesome ! I have one for myself and my nerve damage pain, and it really does help a lot


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## DustyKat (Mar 23, 2013)

Oh man J...:hug: 

I so wish there was more I could do for you both...sending loads of love, luck and well wishes your way! :heart: 

Dusty. xxx


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## Brian'sMom (Mar 23, 2013)

I don't have any experience or knowlege to send you. Just wanted to send you and Claire a huge HUG.


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## kimmidwife (Mar 24, 2013)

Sending you guys hugs! I heard TENS units are really good. If you get one for her let us know how it works.


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## AZMOM (Mar 28, 2013)

I will never stop fighting for this child. 

I have to say though....Im tired. 

J.


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## Tesscorm (Mar 28, 2013)

Claire's so lucky to have you!  It's not easy to always stay positive and patient and have the energy to get through one more day. :ghug:  Is there any way you can take a bit of time out today to do something for _just you_?


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## Niks (Mar 28, 2013)

You're doing a fab job, she really is lucky to have you, you will always be really close.
My J is 19, but you're right she could be 49 and I would never stop fighting for her. It is exhausting. Hope you manage to get some time out.

Thinking of you both (((hugs)))

:ghug:


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## Crohn's Mom (Mar 28, 2013)

Of course you won't stop fighting J, cause you're one kick ass mommy !! 
Hang in there and maybe go get a nice massage and mani and pedi :ghug:
(and don't forget the margarita!)
much love ! :heart:


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## my little penguin (Mar 28, 2013)

Cabana boys your way, trashy magazines and lots and lots of chocolate.

YOu can put your big girl pants on in the am 
have a good cry today


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## Dexky (Mar 28, 2013)

AZMOM said:


> I will never stop fighting for this child.
> 
> I have to say though....Im tired.
> 
> J.


What's going on J??  She ok?


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## CarolinAlaska (Mar 28, 2013)

There's no real rest while the kids suffer, is there?  I pray God will multiply your sleep and give you peace.


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## AZMOM (Mar 28, 2013)

MLP - you crack me up!  :ylol: I shall name my cabana boy Antoine.  

Dex - I'm not sure I know.  :ybatty: I'm frustrated a little with Acra although I do respect and appreciate him.  

CarolinAlaska - thank you :ghug:

J.


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## DustyKat (Mar 29, 2013)

Oh J...my heart breaks for you hun...what I wouldn't give to nip on over there and lend you hand and shoulder...:ghug: 

Thinking of you all, always. :heart: 

Dusty. xxx


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## Brian'sMom (Mar 29, 2013)

Hang in there J. You both definitely need some rest from the crohns. I pray relief comes your way soon. HUGS!!!!


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## AZMOM (Mar 29, 2013)

In a twist of irony, she seems to feel a lot better today other than her twisted finger.  She spent the day with my Mom who called not in a total panic but was concerned about all the blood in the toilet.  Blood in the stool, blood in the water and blood on the toilet seat when she got up.  

But, she's smiling and upstairs playing with a friend, so for today.....I refuse to fret!  (Ask me tomorrow ;-))

J.


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## my little penguin (Mar 29, 2013)

:ghug: Hope they can come up with something soon for her


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## AZMOM (Mar 29, 2013)

4 rounds on the toilet today.  I only saw the last one and my heart sank.  

Water was tinged a pale rust color.  Long line of rust/marroon colored blood down the toilet bowel and what looked like a little stool and a lot of mucus at the bottom.  Marroon colored bubbles on top of the water.  Rusty blood on the toilet paper.  

Usually our adventures in bleeding are bright red or black.  What's rust?  Halfway?  MLP? Dusty? I need opinions.  

She has a friend over and yelled for me to come in there.  We are trying not to discuss it until the friend goes home.  I'm trying not to worry worry worry.  

Love you all for being willing and empathetic to consider Claire's BM consistency and color (weak attempt at humor)

J.


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## my little penguin (Mar 30, 2013)

Hugs
DS had rust dark red color in jan thankfully the mini flare only lasted a few days and resolved on its own.
Rust color typically means older blood - red bottom , black top Gi tract 
Rust I would assume maybe little higher up ?? Hanging out for a bit
I just don't know
Glad she was able to hang out with her friend though


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## DustyKat (Mar 30, 2013)

Oh J...:ghug: 

I agree with mlp, but it would be difficult to pin down a location. An UGIB (Upper Gastro Intestinal Bleed) is primarily from just above the distal end of the duodenum up, so mainly the stomach and oesophagus. A LGIB (Lower) is from the distal duodenum through the the anus.

An UGIB is what normally produces the black/tarry stools. 

A LGIB will usually produce rust/maroon stools. It is the fast transit time that can produce this colour from quite high up in the bowel. I would be inclined to think that if a fast transit is not a possibility then perhaps the bleeding is higher than the anus but still contained within the large bowel??? That is just my musing though J. 

Thinking of you! :heart: 

Dusty. xxx


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## AZMOM (Mar 30, 2013)

Thank you all. So hypothetically all this pain behind her sternum and at top of stomach there may be a bleed that would show up rust-ish with fast transit? Am I tracking?

She's been of the flagyl/c-diff train for 6 days. Probably need to recheck that but I really don't think it's at play. 

J.


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## DustyKat (Mar 30, 2013)

If the bleed was that high up J the blood should black/green. 

Dusty. xxx


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## AZMOM (Mar 30, 2013)

I just reread your response and saw it said quite "high up in the BOWEL". I think Inquit reading at "high". Yep, fried momma. 

J.


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## DustyKat (Mar 30, 2013)

That is yet another club we could all quite easily qualify for J...fried, mashed, you name it! :lol:


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## Dexky (Mar 30, 2013)

((((J and C))))

I'm really not fond of emoticons and text hugs but it's all I can offer!  Wish they were real J!


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## AZMOM (Mar 30, 2013)

Thanks Dex. Clearly she copes better than her momma.


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## Dexky (Mar 30, 2013)

I bet she slept better too!!


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## Twiggy930 (Mar 30, 2013)

Hope things are improving for Claire.

:ghug:


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## CarolinAlaska (Mar 30, 2013)

I'd be just like you - obsessing!  What in the world!  I guess it is better than what your mother reported...  Maybe it has to do with that bleed clearing up from earlier?


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## AZMOM (Mar 30, 2013)

Well stool frequency is better, pain is worse. Fed her some of that organic blended food you suck out of a tube for dinner. It's about all she could tolerate. Couple more days of this and Im calling the doc. 

J.


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## DustyKat (Mar 31, 2013)

Thinking of you both J...:ghug:

Dusty. :heart:


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## Farmwife (Apr 1, 2013)

How's it going?


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## Niks (Apr 1, 2013)

Hope Claire is feeling better xx


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## AZMOM (Apr 1, 2013)

She slept 5 hrs yesterday afternoon. Stool situation stable. Pain under sternum complaints and back pain complaints did not change. Im working today and she'll be with my mom. I'll let you all know the report. 

J.


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