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My 18 Month old has Ulcerative Colitis

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Ulcerative Colitis
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Posted 11/5/2007 11:59 AM (GMT -8)
Hello. I am completely new to this forum.

After bleeding on and off from approx 6 months of age until 13 months my baby boy was hospitalised for 2 weeks, needing a blood transfusion. My wife who was nursing was told (when he was 6months) to stop eating everything under the sun but it didn't work. We were consitently told not to worry and that everything would go away and that this is in no way a case of Ulcerative Colitis (my wife has had Ulcerative Colitis since 12 years of age). After a colonoscopy we were told that it is in fact almost certainly a case of Ulcerative Colitis. After a course of Prednisone my child was doing great on sulfasalazine (500mg) until about 2 weeks ago. Many of the symptoms have returned and his hemoglobin has dropped a little and his ESR is elevated.
The doctor has raised his dose of sulfasalazine to (800mg) since his weight has increased. We were also given a steroid foam sepository to try. If this does not work the doctor suggested trying Imuran since he is too young to have multiple courses of Prednisone. For the last 4 days his symptoms seem better.

Does anone have a similar experience or advice? I'm sure there aren't too many ppl with kids under 2 that have UC.
Take care.
Posted 11/5/2007 1:25 PM (GMT -8)
Hi and welcome to Healingwell. I am so sorry to hear of your little one getting this! It must be so hard on you not to mention your wife. I don't have any kids that have this disease but I just wanted to welcome you. We do have several mothers/fathers of Uc kids here that I'm sure they will chime in soon.
Posted 11/5/2007 1:27 PM (GMT -8)
Wow..I had no idea a child that young could develop UC. That just does not seem fair at all. I'm very sorry to hear this, it must be difficult news for you and your wife. Sorry I can't offer any advice.
Posted 11/5/2007 2:31 PM (GMT -8)
I am so sorry to hear that your child has UC. Two of my 3 kiddos have UC so my heart really goes out to you. Please check out http://www.dragonpack.com/ibdsupport/parents/ HealingWell.com is an awesome site, but the dragonpack site is aimed at parents of IBD kids and there are indeed others with kiddos dx as young as yours (or close in age). If your doctor does put your little one on Imuran, make sure they run the TMPT prometheus test to make sure your child has the enzyme to handle it. My oldest child is on sulfasalazine and Imuran and my youngest is on Colazal and 6MP (similar to imuran).

My youngest UC'er first showed symptoms at 5 months of age, but it was blown off as something else.

Please check out DragonPack if you get the chance and again, I'm sorry about your little one!!
Posted 11/5/2007 2:55 PM (GMT -8)
So there is no way this could be celiac disease I suppose? My grandson was diagnosed with this at 15 months...
Of course this most likely was already considered but it is so hard to think of these little ones on steroids isn't it?
Thinking of you
Cheers, Chloe
Posted 11/5/2007 3:08 PM (GMT -8)
I was wondering about that, too. It would definitely be worth testing for celiac disease.
Posted 11/5/2007 3:12 PM (GMT -8)
So sorry to hear about your son. It's really rough when they are so young and don't really know what's happening to them. All they know is they feel bad, and I know it just tears you apart that you can't make them feel better.

The thing that bothers me about this situation is, so many doctors are so arrogant that they just can't admit when they don't know something. How the heck can anyone in his right mind just tell a parent that bleeding for six months is not a problem and saying there is no way it could be ulcerative colitis when they don't even test for it!
They couldn't figure out what it was but no way it could be UC! I would bet my next paycheck, if it was their child there is no way they would let it go on for six months!

Sorry to rant on your thread but, it just burns me up that your son was treated that way. It seems to be prevalent in the medical community.

I wish the best for your boy and your family.
Posted 11/5/2007 4:04 PM (GMT -8)
Thank you for all your replys. My kid was tested for about a million different things, including celiac disease which turned out negative.

The doctor initially thought it was an infintile colitis that would clear up on it's own. She just thought the chances of it being UC were so low that it wasn't within the realm of reason. Only after his hemoglobin began to plumit, did they start to really take notice.
Posted 11/5/2007 4:14 PM (GMT -8)
Have the doctors considered antibiotic therapy? Might be worth trying.
Posted 11/5/2007 4:19 PM (GMT -8)
I'm sorry to hear of your little one. Was he on any antibiotics at all before the first symptoms appeared? Have you tried eliminating all milk products? What are you able to feed him these days?...a typical diet? Is it at all possible that he has been, or is being exposed to mold? Just thinking out loud here. I hope you are able to find answers for your precious little boy.

Posted 11/5/2007 5:01 PM (GMT -8)
I am also soooo sorry:( I wished I had some advice...but there are a few people on here coping with the same:( Hope he gets feeling better soon! Hugs!
Posted 11/5/2007 5:27 PM (GMT -8)
Just wanted to say Hi and Welcome. There is a ton of information on this site and really great people. I am sorry about your son but glad you are taking a proactive approach to learning as much as you can!
Posted 11/5/2007 6:05 PM (GMT -8)
Hello there! Just thought I'd offer another post of support. I'm so sorry that your babe had to go through all of that. I can't imagine how hard that would be on a parent. (I don't have kids.)

No matter what's running through your minds - nothing you or your wife did caused this. Don't let yourself go there! It's not worth it emotionally.

Hang in there!
Posted 11/5/2007 6:49 PM (GMT -8)
https://www.healingwell.com/community/default.aspx?f=38&m=643365&p=1

So sorry, my daughter was 5 when she was diagnosed.

Posted 11/5/2007 7:16 PM (GMT -8)
So sorry to hear about your son. My older son was diagnosed with UC at age 4 and he responded for about 2 years to sulfasalazine, but then it quit working for him. I was diagnosed with UC at age 34, I responded initially to sulfasalazine. I have no symptoms. I take no meds. Mine seems to be episodic, caused by bodily trauma. My son, on the other hand developed a very aggressive form of UC. We went through every stage of meds, nothing worked except high levels of steroids, but we could not maintain him on that. He had several hopitalizations, blood transfusions, it was extremely scary.

During all that time the only thing that did work, although for a limited amount of time was VSL #3. It's expensive but it is the only thing that put my son into remission, other than steroids, once everything else quit working. I strongly recommend you give it a try, my son enjoyed it just fine when mixed with yogurt. I do not recommend mixing it with applesauce. Eventually the VSL#3 quit working too, but he enjoyed a good 2 months with solid stools and no blood it was as if he didn't have UC at all. Perhaps your results will be even better. I hope so and I'm thinking of and praying for your family.

Jsmom
Posted 11/5/2007 10:12 PM (GMT -8)
I am so sorry to hear that your little one was diagnosed with this disease at such a young age. This must be a very difficult time for family. Hopefully, your baby's health will improve soon.
Thinking of your family.
Posted 11/6/2007 1:59 AM (GMT -8)
Do our kids have a higher chance of getting it if we have it?
Posted 11/6/2007 5:05 AM (GMT -8)
Yes, LondonRed, there is a hereditary link.  Before I got pregnant, we went to genetic counseling due to my UC and my mother-in-law's rheumatoid arthritis.  We were told that there is a 2-5% chance of passing UC on to your child.
Posted 11/6/2007 7:52 AM (GMT -8)
It seems that my son's symptoms are improving with the increase in sulfasalazine. Does sulfasalazine always eventually lose its effectiveness?
Posted 11/6/2007 9:27 AM (GMT -8)
I think it depends on the severity of disease. My UC is triggered when my immune system seems to go into overdrive as a result of physical (not emotional) trauma. My UC is not constant.

My son on the other hand is very different. His UC slowly became very aggressive. He responded to Sulf for about the first 2 years then it quit working for him. Once that happened, with the exception of probiotcs, he never enjoyed a safe complete remission after that.

Incidentally, we also tried the SCD diet and were committed to it for 4 months. (He initially responded well, but 2 1/2 months into it, the diet stopped working for him, proponents of the diet insist compliance and things will work out, we therefore maintained him on the diet. Ultimately he lost so much weight and cumulatively so much blood that he wound up in the ICU for the first of 3 times in 2 months fighting for his life) a terrifying nightmare.

The fact that UC remains in his rectum today even though he had the rest of his colon removed (now has ileostomy) indicates to me that (at least for my son) diet has nothing to do with his UC. It's likely colonic bacteria and immune response to it.

If you find your son seems to need more and more sulf in order to control the disease, that's a sign I think that the Sulf is losing effectiveness.

Jsmom - no meds, UC quiet.
son 8 years subtotal colectomy 7/07. UC still in rectum. Cortifoam and vit. E with probiotic enemas. trying to stop the bleeding.
Posted 11/6/2007 1:17 PM (GMT -8)
I can't even imagine what you are going through. My prayers are with you. This is a wonderful support system that can only help. God bless.

Stacy
Posted 11/6/2007 5:39 PM (GMT -8)
I wish I had some good advice, but I don't even know what to say. That's my biggest fear, and I'm so sorry he is having to deal with this. I hope you can find something soon.
Best wishes.
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