one-year old infant

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memorytheatre
Regular Member


Date Joined Feb 2008
Total Posts : 25
   Posted 2/27/2008 11:59 PM (GMT -6)   
I was wondering if there have been any case reports on the boards or elsewhere of a seven-month old baby having UC. My son who is now thirteen months has a colon and stomach that is completely covered in ulcers. We just left a meeting with our GI team who have brought in Auto-Immune, Immune deficiency, Hematologists, etc. because his case seems to befuddle them all.

They don't really have a strong clue as to a diagnosis or cause. My son has no stomach pain, he is happy, growing (though it has slowed) and seems normal other than the ulcers in his entire colon and stomach.

He is on Prevacid and Sulfasalazine and they were talking about corticosteroids today. He's also on a baby form of the scd diet, which means not eating much variety.

I started him on Probiotics and Fish oil last week and there is some improvement. He has had the entire range of diagnostic tests. Colonoscopy, endscopy, upper Gi, barrium. It's been so bad that he has had to be transfused twice already.

If anyone can provide an educated opinion regarding how long we should hold off on the steroids, if new drugs in the pipeline are worth trying to hold out for etc. They say to get it so young is rare and he's been breastfed his whole life. He was on antibiotics twice but has been tested for C. diff, but I asked them to test again today.

Any advise would be greatly appreciated. The harder drugs are so scary because he's so young and developing.

UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 2/28/2008 12:13 AM (GMT -6)   
I just wanted to send you some support. I can't imagine how difficult this may be. I hope you find the answers you need soon. Take care and God Bless.

Btw, does anyone in your family have UC?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/28/2008 12:16 AM (GMT -6)   
it is rare but babies can have UC. i am so sorry that your baby is having such a hard time, i will keep him in my thoughts.
my cousin had a problem similar, where he had constant reflux and uclers in his stomach, and what they finally found out, and i may not explain this correctly, but when babies are in the uterus their intestines are on the outside for most of the time and then towards the end, they go into the body, but what happened to him was, when they went in, a small part didn't close, and it was causing all kinds of trouble in him, it was allowing stuff in there that shouldn't be in, and letting stuff out that shouldn't have been. He was three i think before they figured it out. i'm not saying that is what your son has, but maybe you should have them start thinking outside the box.
i really really hope they find out something and he gets better

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/28/2008 7:32 AM (GMT -6)   
Welcome to HealingWell, Memorytheatre. I'm so sorry you have reason to be here. You must be frantic with worry. Actually, ulcers in the stomach are not consistent with UC, so you might want to ask the doctors about that. It could mean that what your little one has is Crohn's or some other, completely unrelated, problem.

Have they checked for lactose intolerance? It's much more common in IBD, and can really thwart efforts to get things under control.

As far as steroids, they have some really bad effects when used long-term, but for short term use they can sometimes get things under control quickly then be tapered off. It's hard to think of giving a baby steroids, but if he's so sick he needs transfusions, it might be time to consider it.

I'll be praying for you and your precious son, that a quick diagnosis will be found as well as an effective treatment.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


memorytheatre
Regular Member


Date Joined Feb 2008
Total Posts : 25
   Posted 2/28/2008 6:51 PM (GMT -6)   
Thank you for your kind words of support. My wife and I are very frustrated with the difficulty of finding a diagnosis. We even talked to a hematologist today who was looking possibly for histiocytosis, a blood disease that looks even more difficult to deal with than UC. The doctor said that she didn't think he looked like he has histiocytosis because his external appearance is pretty robust. He doesn't look like a sick baby, except of course in his bloody diapers and the monthly, so far, need for a blood transfusion, which obviously qualifies him as a very sick baby. His GI doctor, at UCSF, expressed trepidation at continued transfusions as they expose him to a whole list of possible complications in themselves.

So the attempts to get my baby into remission continues, a race I must say against the need for corticosteroids. Though I did read a study yesterday suggesting that the earlier you can get a newly diagnosed patient into remission the better for the ultimate prognosis as far as the extremity of the immune response goes.

But of course I would like to find at least a pretty assured dx before subjecting him to such potentially damaging substances.

As for familial history. No Crohn's or UC but a grandfather with Vtiligo and a Grandmother with Graves disease.

Thanks again for the support.

uc_free
Veteran Member


Date Joined May 2007
Total Posts : 646
   Posted 2/28/2008 8:16 PM (GMT -6)   
My prayers are with you and your family. This must be such difficult and frustrating time! I pray that you get all of the answers and treatments needed!
Tara

Diagnosed April 1998 - Pancolitis
Currently on (per day):
Pentasa 4 gms
Imuran 100 mgs


enan
Regular Member


Date Joined May 2007
Total Posts : 30
   Posted 2/29/2008 2:54 PM (GMT -6)   
I know its hard for you to see your little one suffering but hang in there, my daughter was turning 2 when it hit her. She was confined in the hospital twice, transfused twice, doctors have no idea (here in the philippines IBD is so rare) or experience with the disease. So my daughter change pedia GI and gave her streroids like a miracle all her symptoms were gone within 2 days,  but after tapering and off with pred for a month her symptoms came back. So she was put back again on pred, for 6 months everytime we taper to 5mg she woul\d relapse. Most of the time she's pretty much ok when she's on the 7.5 mg, side effects are the usual moon face, weight gain, leg pain no serious side effects all her blood work was fine. Right now she's off the pred and doing ok and I pray she's stays that way, Knock on wood. By the way my family relocated to concord ca. and her doctor now is Dr. melvin heyman at UCSF head of pediatric IBD. Did you meet him? My prayers are with your son i know the pain of being helpless.
daughter anya 2yrs old Dx with indeterminate colitis  4/07
,Pentasa 250mg 1x/day, probiotic, flaxseed oil, multivitamins, iron, immuzinc, barley green.
 
 


memorytheatre
Regular Member


Date Joined Feb 2008
Total Posts : 25
   Posted 2/29/2008 3:22 PM (GMT -6)   
enen,
Thanks so much for that information. We have met Dr. Heyman and he seems to be about as good as they get in terms of pediatric IBD. During my sons endoscopy his doctors were so shocked to see thousands of little ulcers covering his stomach in addition to the ones lining his colon that they immediately called in Dr. Heyman to come see it and to help with the diagnosis. They all say they haven't seen that before. And it's the reason they haven't fully settled on UC as a diagnosis, because the stomach ulcers of course aren't a sign of UC. I think they are leaning the way that the colon ulcers are UC and the stomach is an additional thing. If he is diagnosed I hope that we can get Dr. Heyman as his doctor. His doctor now is Dr. Rhee who I think is a good doctor and is doing all she can.

Did you feel like the steroids were the only thing that would put her in remission? Or after going through this for almost a year now do you think a combination of other things could have induced the initial remission? I'm worried that if we go to steroids, then he will need steroids to stay in remission because it seems like when using them when it comes back, it comes back worse.

I pray that your daughter stays in remission and off the pred. You seem like you feel that you are in good hands at UCSF.

Thanks again.

enan
Regular Member


Date Joined May 2007
Total Posts : 30
   Posted 2/29/2008 9:09 PM (GMT -6)   

I dont know if the combination of supplements and drugs or steroids alone put her in remission, my only experience that everytime she will relapse increasing the dose of the steroids will put her back into remission. She will not go into a full blown flare and will be controlled within a week and be back to normal, but pred is an evil drug so i want her off pred so were always challenging it by tapering it. This time we tapered slowly and increasing it a little when there is something unusual and tapering it again. Her diet is limited to rice, vegetables, lamb,chicken, and her milk peptamen jr (based on the fodmap diet). Hang in there and be strong for your son and keep the faith


daughter anya 2yrs old Dx with indeterminate colitis  4/07
,Pentasa 250mg 1x/day, probiotic, flaxseed oil, multivitamins, iron, immuzinc, barley green.
 
 


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1251
   Posted 3/1/2008 5:37 AM (GMT -6)   
I was diagnosed with UC at the age of 5 although my parents think I'd had it since birth since they often found blood in my nappies (I wasn't breastfood cos mum just couldn't make enough milk!) - but after about 8 months of age it must have gone into remission untreated for a while till I reached 5 years of age when it manifested itself again, so it is possible.

Good luck with a diagnosis.
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!

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