First hospitalization...help

[jeteyetaylor]

Background: on Pred taper to 5mg daily, 40mg omperazole, 75 mg aza. He started the Aza two weeks ago and started having issues that night. However gi doc thought it was coincidence. Any way 2 nights ago, he started having high fever of 102, then the next day it got worse to 103 with vomiting and diarrhea, then the next night 104.5 with more vomiting and diarrhea. All the problems are worse at 1am to 6am. We are in hospital now ruling out infection, abscess, etc... Is this the norm for flares? Is this norm for Crohn's? Curious how many hospital stays do your kids have. How often and what type of flares did your kids have in beginning... Thanks for any replies.

 

[my little penguin]

Paging pilgrim
Make sure they check pancreatitis
Common high fever after Aza
Hugs

 

[crohnsinct]

Aw hun! Sorry to hear this. Nothing is really ever normal with this disese.

You are in the right place and hopefully they will get to the bottom of things.

I am curious why he is so low on prednisone when he just started Aza two weeks ago. From what I understand it takes aza a while to get to therapeutic levels and the taper may have been a bit to aggressive. My daughter flared everytime we tried to taper prednisone so had to slow it waaaaaay down.

Good luck and please keep us posted.

 

[Ronald]

I'm gonna put bets on it being the aza. Doubt it's Crohn's related, especially with him being on pred at the moment. Did he have his TPMT levels checked beforehand? If not, he may not be able to tolerate purines such as aza and 6MP at higher doses.

 

[Clash]

Some kids have issues with Imuran have they checked for problems with that? He could have an abscess so it's good they are checking. Have they checked for pancreatitis?

I'm going to tag my little penguin and Dusty as they may have more insight.

 

[jeteyetaylor]

Thanks!! They did check the tpmt and it was good. However, I heard that you still can have issues. CT came back negative for abscesses. Waiting on blood work and cultures for stool and blood. I was curious of what most people get for their flares. I bet Crohn's is different for everyone on their flares. I feel it may be the aza too. I even thought appendicitis too.

 

[Maya142]

I'm tagging CrohnsKidMom - I think her son had some sort of reaction to Imuran and had high fever with it.

 

[Pilgrim]

It sounds like pancreatitis from the Aza. When it happened to my daughter it happened between her second and third week after beginning Aza. It was like clockwork, about 5 hours after I gave her the med. There was vomiting, middle of the night bm's and finally recurring nights of excruciating pain. They told me her labs were fine for 5 days when I kept calling. Then out of the blue they called and said, take her to emerg for a fluid flush.

Her TPMT was fine. Where it showed was Lipase.

 

[my little penguin]

Second the pancreatitis ..,
That an not lowering pred until the maintence med has had time to build up 3-4 months at least .
Unless it's a biologic (6weeks minimum )
Update when you can
Hugs

 

[lisadc1]

Definitely sounds like the pancreatitis. I developed it after being on Imuran for 6 weeks. Keep us updates as you are able! Prayers!

 

[Sascot]

Sounds like it could be the Aza. My son couldn't tolerate it either so moved onto Mercaptopurine . Hope they get it sorted soon!

 

[jeteyetaylor]

So far, hes been on aza since Nov 14. Labs show lipase norm so far (133 in range). They put him on IV soln for hydration and zofran for nausea/vomiting in hospital. Fevers came down pain still in belly button area. Still diarrhea. No c-diff. Waiting on new blood work. Get to go home, yay! Looking forward to see if it reflares again tonight. I think its the aza too, but doc doesnt think so.

 

[my little penguin]

Some one here kiddo got a high fever after every dose of AzA (or 6-mp).
Might be something to talk to the doc about

 

[DustyKat]

I am away at present having tests done so only have my phone on which to reply. I don't find very user friendly for the forum so will just put down some short questions/suggestions in addition to what has already been covered:
What was his white cell count?
What was his CRP?
Belly button pain is classic for ileal/terminal ileum issues.
This area is known for complications such as fistulas and abscesses.
If there is swelling and inflammation present in that area then it can mask an abscess on a scan.
I assume Liver Function Tests are normal?

My son had his first hospitalisation 17 days after starting Prednisone and Imuran. It took two hospitalisations with IV Hydrocortisone and Antibiotics to reduce the swelling enough to find the abscess they were looking for. His white cell count and CRP were raised which is why they kept looking.

Dusty. xxx

 

[jeteyetaylor]

Crp and sed elevated, white cell count normal. CT norm with some wall thickening at splenic flexure. LFT norm so far, just had blood work that hasnt been released yet. I was rethinking about last night in hospital. He had a good night but i think the hospital forgot to give him his Aza. I gave him his normal dose tonite so if he reflares with vomiting and fever I am going to request stopping Aza. She wants to do remicade if Aza doesn't work. Thanks for all the info. I am getting copies of all testing so I can review it and watch for any creeping numbers.

 

[my little penguin]

For the future request an mre ( mri with contrast and barium ) as good as a ct but no radiation.
Most do not recommend doing ct scans in Ibd kiddos anymore unless absolutely necessary ( emergency ).

Fwiw Ds took remicade for 8 months .
Easiest med for him -no real side effects and he got to forget he was sick for six weeks at a tie and no extra lab work plus a day off school

 

[jeteyetaylor]

Our colonoscopy came back with severe ulcers of stomach. Intestine looked better. Told doc no more aza. We are starting remicade on monday!! Thanks for the advice on the ct scan.

 

[Pilgrim]

A lot of kids have good results with Remicade and there is a support group for that on the forum, too, as well as the parents group which has a lot of experienced parents.

I hope it works wonders!

 

[crohnsinct]

So sorry to hear. FWIW my daughter also had severe disease in her stomach. She is 3 years on Remicade and doing very well. The first 6 months was a bit of up and down but hopefully since he has been under treatment the Remi will work faster for you.

 

[my little penguin]

Ds loved remicade . He reacted twice after 8 months so we switched to Humira
But he also reacted to food and pollens bees etc...
So a very allergic kiddo .


Good luck