4YO just diagnosed with IBD. Not responding to Pred..How do I help my son??

So sorry to hear that your child has UC. As the others have said, it saddens me to hear that he is so young. I was in my teenage years when I was diagnosed with UC and I was also given several dietary restrictions. My GI told me to go on a low residue diet when I was initially diagnosed. This was pretty much to help the colon heal up. Once my colon did heal and my inflammatory markers were normal, she told me that I needed to drink a LOT of water and incorporate a lot of fibre into my diet. So I started incorporating brown rice, whole grain bread etc. into my diet. The thing is, you have to incorporate these things slowly and you must drink loads of water (I was drinking 12+ glasses) otherwise you'll feel constipated which just makes the problem worse. She told me that fibre was essential because I needed my colon to clear out. She said that it was dangerous for us (people with UC) to have stool just sitting there.

You need to be proactive with his health. If there is something you're not happy with, let the Drs know. I left my first GI because she was unable to help me. There are other types of treatment out there like fecal transplant etc. Some GIs tend to follow the conventional drug route. They'll start with Prednisone then introduce 5 ASA. If that doesn't work they move onto immunosupressives then biologics. Some people just don't respond to these meds so I urge you to find a GI doctor that can think outside of the box and try to help him in the best way possible. I don't want him to suffer the way many of us did. There is someone out there that can help him.

Also, do your own research. If there is something up and coming, mention it to your doctor. I've found that I had to do an enormous amount of research on my own. This is a tricky disease and we all respond differently. We all know our bodies best. Also, I would urge you to keep a symptoms journal. This is the best thing I ever did. It really helped my doctors. Write down his symptoms, what he ate that and make note of how his BMs look and how many. Good luck and I'll be praying that he feels better soon.

Teddy92 -

Two quick questions. Your post makes it sound as though you were diagnosed as a pediatric patient, though you're 22 now and your diagnosis was in 2013? Help me with the math.

Also, your signature indicates you're taking Remicade, "5 mg/kg every 8 months." Should that read "weeks?" I didn't think Remicade doses were spaced as far apart as 8 months.

Thanks

All the best Reluctant2Be! I hope the symptoms stay away!

artvark - Sure, I should have clarified! I actually was still seeing the pediatrician then and had not switched to an adult doctor :p. After my UC diagnosis became more complicated, and I began to see specialists, I finally transitioned. Also thanks for pointing out that error - yep, it's 8 weeks! I'll fix that!

CoastalChris - Were your children also diagnosed with UC? Were they dealing with the UC and the parasite concurrently? Also is this strep count part of normal blood work, or was it part of a workup you had to more specifically request (as I'm assuming you had to with the food allergies)? Sorry for all the questions! I haven't been tested for any allergies since my diagnosis and am still reading and figuring out if I should try to adjust anything dietary. I realize that this is a very individual issue.

I'm a little perplexed on how he contracted c-diff? Does he have other health problems? It's just unusual for a "normal healthy 4 year old." Had he been on antibiotics for something? In the hospital? Not impossible...just unusual.

When I was diagnosed my GI mentioned surgery to me 2-3 times, I finally said, "I would appreciate if we save this discussion for when all other options have been exhausted." It was never mentioned again. I think they like to give the option, because it is a "cure." (Term used loosely here).

As far as the diet- I too was on low residue- I remember getting annoyed they wouldn't even let me have oatmeal, it was a standard in my day prior to getting sick. I did eat white rice while I was sick, white bagels, pasta plain, soups, etc...they were very easy to digest, sort of "comfort foods." Another food I enjoyed was different squash cooked a million different ways...butternut, kobacha, spaghetti squash, I ate zucchini regularly baked with cottage cheese and low sugar marinara. At this point it is really about just getting SOME nutrition. They suggest higher protein, but the only way I could tolerate any meat was nearly puréed in a blender and added to food...and red meat was out if the question! It is TEMPORARY. I haaaaate TPN....and highly discourage it's use if at all possible. Do your research, I don't want to scare you...just might be worth looking in to.

I agree with Katmom the chronic colitis issue and needing a biopsy for a definitive dx. Also agree with possibility of fecal transplant- my GI at first looked at me like I had 3 heads...he said that's only for CDiff colitis...not UC, I said, "I think it's time to catch up on current research." I also told him I will seek treatment elsewhere if we get to that point if he isn't open to it. The thing is, these docs are not infallible, and they don't know everything-medicine changes so rapidly! So do your research, and question EVERYTHING! You have to be his advocate.

And yes--colonoscopy can be done on a 4 year old..