Experience with flare due to GI infection?

[JacksParents]

Hi all,

Our 15 month old was doing well on 6MP for 3 weeks - drinking all of his necessary calories via bottle, 2 to 4 nice poops a day - and then he was hit hard with a GI bug (gave it to mom, too). That was just over 2 weeks ago and he is still doing poorly - refuses all bottles and pooping 5 to 7 times a day (with blood in it, just for kicks!).

Anybody else experience something similar - (early) remission cut short by infection causing acute flare? Any ideas re: whether the 6MP will work for him again or is he now a 6MP failure? We have been tapering prednisolone, too, and the last cut was just before this happened... So frustrating (and scary).

Thankee,
Eric

 

[DustyKat]

I'm so sorry to hear this Eric. We have no experience with that here.

Has he had stool tests done to see if the infection has cleared?

If it has stirred things up again I don't know that would be considered a failure of 6MP, it doesn't become fully therapeutic for at least 3 months, how long has he been on it? As much as I hate to say it perhaps doing another round of Pred will bring things back under control again and by then the 6MP should well and truly be in his system??

I so hope things settle again for you little guy, bless him...:hug:

Dusty. xxx

 

[Farmwife]

Yes that would scare me too.:sign0085:
I would think that when the infection cleared,
that would help some of the problems to go away.
Have you had that checked?
But remember I can only play doctor in my mind.:thumleft:


Farmwife

 

[dannysmom]

Sorry to hear. I assume your wife is feeling better now ... and it took a normal couple of days? It would be great if via stool tests they could determine the bug. It makes you wonder if your son is still fighting the bug or if the immune system just got over active again. I agree it is scarey and I hope he will get back to his improving state soon. (fyi - it takes me a whole month to get over GI infections that hit other family members for just a couple of days. But I am not diagnosed with anything as this does not happen frequently. When Danny - also undiagnosed- gets hit with any germ it takes him many months to get back to baseline)
Good luck!!

 

[Sascot]

Sorry he is feeling poorly again!! I agree it might be worth getting them to check his poop for bugs - maybe he just needs an antibiotic to clear up the bug. Hope he feels better.

 

[Suzysu]

I'm afraid I don't know the answers to your questions either I just wanted to say that I hope he starts to make a recovery soon and that it is all just a set back. Fingers crossed for Jack xx

 

[JacksParents]

Hi,

Thank you Susysu, DustyKat, Sascot, Farmwife and DannysMom for the thoughtful questions and encouraging words.

Jack has been on 6MP since Jan 21. As of April 17, he was in therapeutic range (6TGN level above 235) and responding beautifully. He was full of energy, voluntary drinking of formula and making well-formed poops (2 to 4/d) with no blood. His absolute lymphocyte count was low, so we eased up on the 6MP (to 20mg/d from 22.5mg/d) and continued the steroid taper.

He did great until May 12 when he got sick. His bottle intake began to crash and the poops got more frequent and bloodier; still, he was better than he had been during previous flares. One week later, he was admitted to the hospital for 1 day - he had a flex sig, double contrast abdominal CT and blood drawn for 6MP metabolites. Flex sig to ascending colon showed moderate inflammation of transverse and descending colon and CT revealed only large colon involvement. Stool samples and cultures were unremarkable - no bugs seen. 6TGN level came back late last week - 211 (subtherapeutic) - even before the results were back, our GI team increased the 6MP back to 22.5 mg/d on May 28 as he had done better at that dose. He completed a Flagyl course on May 27, too.

At this point, he is still pooping 5 to 8 times a day but there's not much blood. No pain with defecation and he is happy and playful. The only catch is... he has not taken one calorie by bottle since May 27. Everything goes in via NG tube. He drinks water but refuses bottles of formula. He's had the NG tube since March 1, except for one week when he drank everything voraciously.

Question: anybody have experience with getting a baby off long-term NG tube? Is it OK to just take it out and see how he does? I suspect the NG tube is causing problems with his lower esophageal sphincter, leading to uncomfortable swallowing and probably GERD (he is already on Prevacid because of the steroids). We could always put the NG tube back in (although he now knows it's about to happen and he gets very scared, which is heart-breaking).

Thanks for suffering through this looooong post.

Eric

 

[Catherine]

No real advice. But there some children here have tube feeding used a form of treatment which has got them in remission by resting the bowel.

My niece who had nothing by mouth for first years of life due a problem with her mouth. Is now adult of 25 years and eats normally.

 

[JacksParents]

Thanks, Catherine. Jack's disease is (at present) only colonic. My understanding is that enteral therapy can work wonders for small bowel disease but it doesn't do much for colonic disease. Of course, it ensures that calories get in; without it, our baby might have starved to death long ago (at a minimum, he would have been a terrible failure to thrive).

 

[Suzysu]

Hi, I have no real advice - if he seems to be improving - ie levels getting near normal, poop improving etc etc and you think the tube is causing problems (I can only imagine how horrid it must feel) then maybe it would be worth giving it a go without the tube - as you say you can always put it back in (even though it will be stressful to do this). Go with your gut instinct. Good luck - am keeping my fingers crossed that ack will continue to improve. xx

 

[crohnsinct]

Sorry I don't have much advice. I can only imagine how hard this all is with a baby who can't tell you what is going on. I admire how brave you are to consider removing the tube etc...I would be so PTSD that I wouldn't take it out until he got married! FWIW our ped GI says that there are now studies showing EN does work for the colon. We are trying it. 5 weeks in. Doc says today's bloods will tell. Fingers crossed. I will post results on the EN thread.

Good luck with your little guy!

 

[DustyKat]

Hey Eric,

Sorry, no experience with NG tubes and young ones here. Your idea about the tube aggravating his oesophageal sphincter may be right. The other thing to consider, if you haven't already done so, is to have a good look in his mouth. Perhaps there are ulcers, thrush or something that is making it difficult for him to feed orally???

If you are able to remove and insert the tube yourselves then I don't see that removing it would be a problem. No doubt you would be well aware of maintaining his hydration and it does not take little ones long to slip into dehydration, particularly if he is having multiple loose bowel motions a day.

EN is very good for small bowel disease but it is also good for large bowel disease. I think its effectiveness is more of a concern for UC rather than large bowel Crohn's.

Good luck Eric! I hope things settle for Jack and soon, bless him. :hug:

Dusty. xxx

 

[Sascot]

Sorry no experience with long term NG tube. My son's was in for 8 weeks and that was it. Maybe it's worth having the doc take a swab of his tongue and nose to check for bugs or thrush which may be causing discomfort? I know you worry about him getting off the tube, but I'm sure as he becomes more self aware and aware of other kids eating, he will probably take more interest. Do you have a hospital dietician who can maybe advise you on how to go about weaning him off the tube? Couldn't quite remember - is he allowed normal food? If so, maybe he could get his calcium via yoghurts, cheese, etc and just let him drink water and not formula. Sorry if I got that wrong and he isn't allowed.

 

[kimmidwife]

Hi Jacksparents,
I wanted to let you know every time my daughter was hit with a GI bug she would also get a bad flare that was hard to get under control again. Our doctor said that is normal and it just takes a while for the meds to kick in again.

 

[QueenGothel]

Lurking wondering how Jack is doing.

 

[kimmidwife]

Just realized this was an old thread. I too hope Jack is doing better!

 

[JacksParents]

Jacks latest

Hi-

Thanks for asking after Mr. J. He is status quo on max 6MP and we can't get him off the pred. He is better than February but just not good enough. He had a PEG placed in August but still won't eat solids/purees - only about 300 to 500 kcal/d of Elecare Jr.

Per our GI docs (whom we trust), our options at this time are switching to MTX, remicade and ileostomy. As for MTX, the evidence in not strong that it is useful for babies when 6MP has failed. As for remicade, nobody knows what the cancer risk is for 20 month olds; we do know the risk of HSTCL is greatest for young males with any history of 6MP use - is the risk greater based on age of med introduction? duration of remicade tx? Unknowns.... So, we have opted for ileostomy (sometime in November) and hope it will be temporary. His disease appears to be all colonic so the big question is what happens if/when we re-connect him. There are no good studies on his age group but, anecdotally, some have full blown recurrence, some have less severe disease and - bizarrely - some have permanent remission. Who knows what cards he will be dealt... We do know that he needs to grow (he is below the chart for height) and learn to eat. We are so grateful that he is happy, smart and social. We will take a baby with a bag who is medicine-free, growing and, hopefully, developing an appetite for solids and figure out the rest later.

Thanks so much for the kind words and encouragement- you are all so lovely.

-E

 

[DustyKat]

Such difficult and heartbreaking decisions...:hug::hug::hug:

Given I was in your situation I know I would take the ileostomy option too. It is so hard to stay grounded when your world is falling apart but I can see you are managing wonderfully well. You will probably scoff when you read that! :lol: But when and where it counts you truly are doing such a fantastic job with Jack, bless him. :ghug:

In my thoughts and prayers, :heart:
Dusty. xxx

 

[my little penguin]

Hugs... No decision is ever easy you just do the best you can at the time.
Hope the surgery works and he gets healthy since that is always the goal.

 

[kimmidwife]

I agree with Dusty I would do the surgery too. I will keep my fingers crossed and pray for him. please keep us updated how things go.