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

We are in day 10 of a hospital stay for newly diagnosed IBD. It all started with C Diff. Textbook bloody diarrhea that refused to respond to Flagyl. Started Vanco...symptoms worsened. He is now negative for C Diff. after 14 days of Vancomycin, but still bleeding out the wazoo.
He just had an endoscope and biopsies. Definitely worsened the bleeding, showed "chronic colitis" but did not say what it is. Gave him IV Prednisone starting a week ago and sent him home on the second day w/oral...back the next day for worsening bleeding/unformed stools. Back on Pred for 3 days, w/o positive response despite liquid diet. PICC put in and TPN/lipids started for total bowel rest. He is still bleeding, having 6-9 "BMs" per day. Just started Remicade today.

What do I do to help this poor kid? The docs are already talking medication for the rest of his life, as well as what we'll do when the Remicade stops working. They want me to complete change how I cook and how my family eats (I eat high protein/whole grain/whole veg/low sugar diet. I have hypoglycemia). I don't know what to do with all this at all. On top of which, I am scared of the side effects of the Remicade and all this other stuff. It seems like he just gets worse and worse and now they are talking to me about surgery?!?!?!

Also a lot of things come to mind - but seeing as he's only 4 years old I'm reluctant to suggest anything other than maybe try adding BioGia www.biogaia.com/product/gerber-soothe-colic-drops which I do know a few people have tried with their young children in your position. You may find it helps. If you're in Canada you can get it at the pharmacy counter at shoppers drug mart. But I'd OK it with your GI first.

I'm putting him on FloraStor. The GIs were not thrilled with adding anything but I will be doing the dosing at home, won't I?

If this started with c-diff and the tests are coming back as chronic inflammation but with no actual ibd results...how/why are the GIs insistent that its ibd? Maybe it was just c-diff and now his system is struggling to recover, and or a reaction to the powerhouse antibiotics. Sorry you and your family are going through this. Try to just take it one day at a time.

I'm so sorry to hear about your child. Regarding diet--I was a healthy vegetarian when my UC started and had to change my diet completely to achieve remission.There are things your doctors are saying that worked for me: no rice (especially brown rice), no veggies with a lot of fiber (such as broccoli or cole slaw). I say give it a try but do not think of it as permanent.

After my gut got healed (which took a while) I can now eat more foods that caused problems before. Fat is loved by my gut and yes I eat meat because it too is loved. Low residue means less work for his GI system to do, let it take a looong rest. Keep fiber very low, do veggie juices instead of whole veggies. The low residue diet is not forever but it's what he needs now.

Best wishes. Hope things get better for you both.

I am so sorry to hear that your son is going through this. I am 33 and newly diagnosed and it is overwhelming for me, so I cant imagine the stress of having your son go through this. I am currently reading the book Breaking the Vicious Cycle on the Specific Carbohydrate Diet. Have you looked into it? The author was also a mother with a very ill four year old child, please see her story here:

http://www.breakingtheviciouscycle.info/p/about-the-author/

Good luck and God bless you! I know I would walk to hell and back to help my children, as most mothers would.

so sorry you all are dealing with this :-(

I wouldn't even begin to advise you on anything specific - just too many unknowns - but I am curious about what kind of liquid diet he was on - and what do they consider chronic ??

our bodies have an incredible ability to heal themselves - it sounds to me like he just got whacked by the c-diff and just needs some time to heal - the talk of lifetime drugs and surgery seem way premature at this point ---------doctors !!!!!!.

hang in there -

Before going with Remicade please ask for fecal Transplant.

C.diff being the initial cause, Fecal transplant could be very effective.It is an FDA approved treatment for recurring C.diff.
I remember GI saying that if a flare is due to C.diff, It could not be controlled by peridnisone.

Also false negative test result is very common with C.diff.Have to repeat the test at least 2 or 3 times if the symptoms still continue.

Well, they've already given him the Remicade. I am not happy but was made to feel that I had no choice. Initially I was told that they would only do 3 doses of Remicade to see how he responds, now they are wanting to schedule us for the next six months of Remicade doses. I told them I wasn't happy with long-term Remicade and they warned me that if it is ever out of his blood he'll develop antibodies and there will be nothing that he can take to control flares.
I am at Children's Mercy in KC. Supposedly they are the best around here, which is super, but it gives me nowhere to go for a second opinion, because no one is going to disagree with them.

If he shows C Diff again we will find someone who will do FMT. This is ridiculous. They are filling my son with whatever they can bully me into giving him. That deserted island is looking better and better. I just want to go cry.

I was very sorry to learn about the difficult time your family is experiencing at the moment.

I fully agree with what other members suggested here with regard to Fecal Transplant. I think the best place to learn about it is the Power of Poop website. Over there your can see a video recorded by a young girl of 9 who tells about her great success with this therapy. Also there is another video recorded by a mother called Kathy in which she gives clear practical instructions for the fecal enemas.

As Bloom93 has suggested, the FDA is more likely to approve a transplant colonoscopically and I think it wold be good to start with it before embarking on the fecal enemas.

My heart goes out to you. I pray that your son gains a full recovery soon.

Shrron

Post Edited (sharron19) : 5/24/2014 5:10:42 AM (GMT-6)

Thank you all for your encouragement! I was super exhausted verging on hysteria when I posted the other day. We are back home now and keeping a close eye on him. I have a second opinion scheduled in St Louis; their children's hospital ranks like #18 in the nation. Fingers crossed!
For now I am gritting my teeth and following at least some of the recommendations. A bland diet (short term) can't hurt, but I am not giving him Zofran and I am not giving him Prilosec. I am not a fan of add-on scripts.
Old Mike, he was born vaginally and I breastfed for 14 months. Wishing I still had my frozen stash from little bro but I tossed it all when we moved.

Hello, I am so sorry to hear about your son and what you've been going through. I'm not a parent but my parents went through a very similar thing when I was in the hospital for my first severe UC flare. Initially was given all the IV antibiotics, did nothing and thought I was getting better for a day or two but got worse. Tried IV prednisone in hospital for about many days as I was too sick to leave and we were too afraid to begin Remicade without a second opinion. Steroids only made things worse, I was refractory (but still got all the great side effects ;p). Upon transferral to an IBD center, I was immediately tested for TB and given Remicade. The doctors there were much nicer, very informative and friendly with my parents and I in teaching us about the benefits of the drug and its success statistics, as well as risks and concerns. This made a huge difference and we felt very confident with them.

Within hours, what was months of bleeding and several weeks of very acute, severe pain and symptoms (my colon was in bad shape and I was on the cusp of emergency surgery) resolved. Things only got better from there for me with each infusion; I know everyone responds differently to Remicade, but being very recently a pediatric (and now adult, ahh) patient that knows what its like to be scared of starting stronger medications, I feel your pain! Once I left the hospital, I spent a while tapering off of the (useless in my case) steroids, since I had been on them a while, and now manage with just Remicade and mesalamine. I also take a probiotic (Culturelle); I was given them in the hospital while on all the IV abx, as I'm sure your son is/was. I don't really know if the probiotic helps any extra, but I make sure to always take extra now if I need abx for anything.

You mentioned that you were able to take your son home - I hope he is responding well to the Remicade and feeling better? In some people Remicade can take a little while to being its therapeutic effect, but for some people it is very quick-acting, like myself, and your son I hope if he responded similarly. In either case, I hope that he has had the immediate pain resolved - it makes it much easier to start dealing with some of the other questions you posed, and that others have been more helpful in answering. Obviously controlling the C.diff issue so it doesn't make anything worse is a top priority.

Since you mentioned the diet issue - I was extremely active in school before the UC hit and was proud of myself of having the healthiest diet I ever had, pre-UC! Your son is very lucky to have a mom with such a good understanding of nutrition. It was such a blow to only be able to eat bland, seemingly low-nutrition, simple carbohydrate-based foods once I regained the ability to eat. When I could finally get back to foods, but was still flaring, I ate a high protein and high simple carb diet in-hospital. This was mostly chicken/fish, broth, mashed potatoes or white pasta, and steamed veggies (generally carrots or green beans). I had lost a ton of weight and this helped me to keep a tiny bit on. I can say personally that as soon as I healed up I was able to eat almost anything again a little while after leaving the hospital (still try to eat veggies and a very healthy diet with complex carbs, but steam veggies, etc. now). I know diet affects people with UC very differently, but if he heals with the drugs, the lining of his colon will strengthen and he will not be stuck with mashed potatoes forever, fear not! I feel great now and am back into sports and a largely normal diet.

And on the issue of lifetime medications, echoing some of the other posts, some doctors may not have communicated that in the best way. Remicade specifically is generally meant to be taken continuously, and may not last forever, but there are several people who I now know of who have been on it for many years and are doing well. There are also new therapies coming out (one just a few days ago!) that I encourage you to look into in addition to some of the things mentioned above - the picture is much more hopeful now! I hope that once he is in remission he will stay there and by the time he is my age the landscape of therapies will be even better. If he doesn't respond well to the drugs, there are effective surgical options to manage UC (ileostomy or j pouch). This was also initially scary to hear, but was reassuring for me to hear that the success rates for the j pouch surgery are very high (overall and generally speaking) if it does come to that.

I am relatively new/not frequent on this forum and apologize for my lengthy and inarticulate response - as well as the fact that I can only speak for myself. But your post really reminded me of my parents' and my own experience with this! I wish you and your son all the best during this challenging time and I hope you know that you are not alone!

You have some good advice to sift through. I am curious about where the inflammation is and if they biopsied. Can they even give a colonoscopy to a 4 year old? If it showed chronic colitis, there was previous tissue changes, so high up colon inflammation might have been present. I hope for you that the CDiff can be resolved. Yes, to the fecal transplant idea. Yes to the most complex probiotic and the best teaching hospital. Re: diet. Low residue is not forever, just till healing begins. It is not the most nutritious, but helps short term. Don't let anyone bully you into a whole new cooking regimen until you know what is what. Keep him hydrated. Where there elevated serum markers..SED rate-ALT etc?
I am a Remicade fan, so I hope he responds. No going back now, so just take it one day at a time. So sorry you landed in our world. Keep reading, go to the CCFA website- good ped support group. Keep us posted.