Remicade was an EPIC FAIL for my 4 year old. Do we have no options but surgery?

Ok, so flares started in April. This was my son's 3rd round of Remicade and he went into anaphylaxis within 15 minutes of the IV starting.
They do not want to start azothioprine, and frankly, I don't either. According to them, we have no choices for medication left.
This boggles my mind because, other than times when C. Diff recurs, there are no noticeable symptoms. I mean, he's on day 10 of Flagyl and hasn't even had to go today.

So sorry about your son. I belong to several j pouch surgery groups and it's not that unusual to hear of young children needing surgery. They adjust very well. Of course this is reserved at that young age for severe cases that don't respond to drugs.

I would inquire about the new drug out now Entyvio. If Remicade was the only thing he's been on, there's still choices. I suppose it just depends on how aggresive his UC is. Best wishes for your little guy.

Edit: one thing I would NOT give him is prednisone. It's way too detrimental for his young, growing body.

Surgery for young children is not that unusual and when compared to a long life of heavy drugs, it might be a better choice. Go to www.j-pouch.org and post a question with the heading '4 year old possible surgery'. Parents who have been through this will respond to you. Steve had UC and had surgery and then years later his 4 year old daughter was dx with UC and she ended up needing surgery. It's been a couple years and the daughter is doing great.

The parents will be a great resource to you if you have to go down this road.

Sue

I could be totally wrong about this but doesn't the medications have to do through another FDA approval process for Pediatric patients? I think it usually happens after the medication is approved for the general public and they have to do additional clinical studies on pediatric patients to make sure the drug is safe for children.

I wish that I could find a post that I read on the Ostomy or UC forum but it was from someone who had surgery when they were 4 years old and now they were around 20 years old and doing great.

I guess that you could try Predisone but that drug has many side-effects like sleep loss, mood swings, etc...

I recently had my colon removed and 3-step J-pouch and I am thrilled with it, I finally feel well again, better then when I was in Remission on UC meds.

Is Entyvio an option? Remicade didn't work for me either which is why I'm now trying Entyvio. If this doesn't work I'm opting for surgery.

Just be doubly aware that fecal transplant has its own dangers,you can get very very
sick from it.
Your docs should know about FT in the case of med failure for c diff.
Perhaps others here know where they are doing it for c diff.
OM

If it is IBD he will need on a maintenance drug. Prednisone is a temporary and short term solution. Some medicines also take a while to start working. It is best to not wait until his symptoms get worse. I would really consider switching doctors. What did the second opinion you got suggest?

Just did the google search I suggested and one of the top results was this:

http://www.mayoclinic.org/medical-professionals/clinical-updates/digestive-diseases/fecal-transplants-dramatically-improve-c-diff-in-kids

Your doctors aren't very up-to-date since this was published a year ago

Safety, tolerability, and clinical response after fecal transplantation in children and young adults with ulcerative colitis.

http://www.ncbi.nlm.nih.gov/m/pubmed/23542823/

That's really strange they won't even try 5ASA's. Did the second opinion want to try? I also think you should look into fecal transplant, especially if c dif is involved. Best of luck, I hate reading about kids who have this awful disease :(

Was the inflammation throughout his colon? I don't believe in surgery after "inconclusive" is the diagnosis. What did the biopsy report say? My goodness..how hard this must be on you.
Please try to get to a center of excellence-a teaching hospital. The University of Chicago has some top notch pediatric GI's ( many other good ones elsewhere too, I know lots of them due to a traveling daughter).
Time is not your friend. When things go south, you won't have the luxury of travel or time, so pursue appointments asap. I too know someone headed for surgery that got the C-diff under control and now 4 years later is just on maintenance drugs (5ASA's). I'd hate to see a colon removed because of an infection.
Hugs and hope to you.

I am so sorry you are going through this, I understand , because my daughter was diagnosed at 15months old. The doctors wanted to do surgery to remove her colon also, and told me that she would be "just fine" the problem I had was that they never told me what caused her pancolitis, so why would I trust them to say she would be "just fine"

She was 15 months old and you can read her story under Hailey's letter. She is now 14 and growing healthy and her colon is still intact and she does not take any medications. She also had c-diff numerous times .

I went to many different doctors and finally after years of testing she tested positive for the bacteria cryptosporidium, This was after years of normal lab testing. It
was found by an immunologist that has helped our child live a normal life again.

Hailey always would do well with Flagyl , and after the "one" test that showed cryptosporidium, her
doctor admitted to us that they cannot always detect all parasites and bacteria and that he truly believes that she had it the whole time, and that it was going through its life cycles in her colon. Hiding deep inside of it.

This is why you see some people with Uc that have their colon removed and then " the disease" travels up to the small intestine and they are back to square one and back on medications.

I have been following these forums for years , and their have been numerous times that I have seen children go through surgery, only to be sick again and put back on medications , because the doctor wasn't sure if it was UC or Crohn's disease, this is why you have to search for the doctor that you feel is the best for your child's health. It maybe hard, but you will find them, I went through a lot of doctors, but I always listened to my motherly instinct, and eventually we find an immunologist that studied her immune system to get her better.

That could be a question to the GI's , about why your son contacted C-diff, does he need to see an immunologist to see how is immune system is ?

I would continue to find another doctor that is going to try and find the answers as to "why" your
son has inflammation and I would not let them do surgery if their diagnosis is inconclusive!

You need to repopulate the bacteria in the colon, some doctors believe that Uc is merely a over growth of a bacteria that grows in the colon, and you need to replace it with healthy bacteria.

If your son had c- diff my next step would definitely be to find a doctor that will do the fecal transplant to give him some healthy bacteria to repopulate the colon.

Probiotics are also something I would invest in, Culterrelle, Reuteri, ( by Nature's Way ) are the ones that Hailey takes everyday now and she is so healthy now.

Please email me at anytime, I understand how you feel, I was you, 12 years ago, many nights I cried myself to sleep.