Son is newly diagnosed with UC

[jchavira79]

Hi, I just joined. My 8 year old son was recently diagnosed with UC after spending two weeks in the hospital. He’s been out a little over two weeks. Last Tuesday he had his second Remicade infusion. He’s almost done being weaned off the steroids, too. Anyway, he had a good week and a half of being at home and symptom free. Now it’s back. This is all new too us. I’ve called his GI doctor and am waiting for a call back. Is this normal so soon after remicade?

It has been a rough few weeks on our whole family. My son is autistic too which compounds things. We were looking forward to a symptom free summer. I’m just so shocked that so soon after getting out of the hospital and his last infusion that he’s having another flare up.

 

[Anna's Bandit]

Hi. I am not a parent, but I read many, many posts on the forum. There are some fantastic moms here that should be coming your way to help you soon. I have learned a lot from reading their posts. I am sending you and your son my support and prayers. Lynda.

 

[my little penguin]

Remicade hasn’t built up yet in his system
That takes a minimum of 6-8 weeks
Definitely let the GI know when the symptoms started again
The prednisone was doing the heavy work while remicade is building up
That means when you lower it some of the inflammation was coming back

The steroid will probably need to be increased again until remicade is built up
Most take months to get to a happy place

You might want to add een as well (exclusive enteral nutrition-formula only )
As effective as steriods for some
Typically done for 6-8 weeks as formula only
Then the kids are switched over to supplemental EN
To keep upweight /growth support the biologic

Ds was dx at age 7 and now is almost 15

He has done een many times
He was on remicade at age 8

Good luck

 

[1995]

Your son is still young. With the right approach he will heal compleatly of uc and authism.
You have a lot of online reading to do.Your GI will help your son to get into remission.
When he gets into remission start healing your son the natural way.
Check Jini Patel Thompson's way of healing, cut the rafined sugar from his diet.
Heal your son with healthy cooked food see what works for him what doesn't.
Slippery elm,Marshmallow root, L-glutamine, pumpkin, salmon, olive oil, ginger, tumeric and so on..
some of these things are gut healing some are gut soothing, anti inflammatory, leaky gut healing ...
Research, read, research...
Stay positive!

 

[my little penguin]

There is no natural treatment for Crohns in kids
Please follow your GI advice
Do not give any supplement without your GI knowledge

 

[crohnsinct]

Hi there. I am glad you found us although sorry you had a need to search us out.

Whoa that is an aggressive steroid taper. It is rare that two weeks after being in the hospital that any kid would be able to be almost done with steroids. At diagnosis it took my daughter months to get off steroids and she was also started on Remicade in the hospital. Every time we tapered down symptoms would return so we had to go very very slowly. My guess is your GI will up the steroid for a bit and slow down the taper. As MLP pointed out a few weeks of Remicade isn't enough time for it to take over yet.

FWIW - my daughter was never able to taper steroids effectively. 4 months in our GI suggested adding another med to help Remicade out but we did a round of Exclusive Enteral Nutrition and that was just the boost the Remicade needed.

A year later we added methotrexate but that was to help keep antibodies at bay. Has your GI started your son on methotrexate also? It is usually used for at least six months to help prevent antibody formation.

Be gentle with yourselves. You have been thrown into a crazy new world. It takes time to adjust and find a treatment that works. Even with Remicade the dosing level and frequency can be tweaked many times before you hit the right spot. Generally we find it takes about a year to get your feet under you. Come here and vent, ask questions and share your successes. Speaking of successes, read the successes thread here. It is very encouraging.

As for diet, you could talk with you GI about the SCD diet. it isn't great as a treatment but used with a maintenance med, it does help some people with symptoms. I mention it to you because it was originally a diet developed to help individuals with autism and they found it was helping with IBD symptoms. I can't speak to it's success with autism but my daughter worked with many kids with autism back in Ct and it was pretty popular. It is restrictive though.

 

[Maya142]

It took my kiddo 3-4 infusions to feel a lot better on Remicade. After that, she started feeling pretty normal!!

8 months after starting Remicade, her scopes looked great! Her colon had healed completely - the ulcers found during her first scope were gone and it looked "perfect" according to the doctor. Like she didn't have IBD!

Her TI showed mild inflammation on the biopsy but still looked MUCH better than at diagnosis.

Remicade can take a while to work. Some parents have kids who take as long as 6 months with several dose adjustments before it works. Some kids need a higher dose or more frequent infusions or both (my daughter had to go up 10 mg/kg every 5 weeks or so). Some kids need a med added on - Methotrexate is usually used (mine did).

MOST kids need a bridge therapy until Remicade starts working. That's usually either steroids or EEN (formula only diet). We did steroids. But lots of patients have successfully done EEN for 6-8 weeks. Now some doctors do allow kids to do 80% formula, 20% food because that is much easier on kids emotionally. It has been shown to work about as well as 100% formula.

The SCD diet is used by some parents. At our hospital (which is in the top 3 for pediatric GI depts. and has a big IBD center), they actually do not like the SCD because it is so restrictive that 1)kids have a really hard time with it and 2) They tend to lose weight on it. They prefer the IBD AID diet which is less restrictive.

 

[jchavira79]

Thank you all for your support. We called the GI doctor because he had a bad night. Up and down to the bathroom and in pain. She suggested we bring him into children’s so we are here. He’s being admitted, again.

 

[Maya142]

Your poor kiddo. Keep us updated if you can. And be kind to yourselves during the hospitalization. Some parents find switching off helps - mom takes the day and dad takes the night. That way you both get a break and some sleep.

We are thinking of you :ghug:.

 

[jchavira79]

Update: the results of his stool sample detected a clostridium difficile infection. Probably a result of remicade because it weakens the immune system. So hopefully with antibiotics he will get to come home in a couple days.

 

[my little penguin]

C diff unfortunately is extremely common in Crohns patients
Even when your in NO meds
Any hospital admission put you at higher risk as a Crohns patient

Those are way more likely than remicade
Since he just started it

Look at his wbc numbers
They would all have to be low

Biologics make you more susceptible to opportunistic infections
Like pneumonia if you already have the flu
But it does not make it more likely for you to get the flu
If that makes sense


Hope the cdiff clears soon

 

[jchavira79]

If that’s the case, he could’ve caught it during his last stay at the hospital or his recent visits to the hospital. Ugh.

 

[my little penguin]

Yeah
Lots of c diff tests over the years for ds
So far so good
But other kiddos tend to catch it more once they have had it once

 

[crohnsinct]

Well as much as we don't like to deal with c. diff it is much more preferable answer than the IBD meds aren't working. Lesser of two evils I guess. :yrolleyes:

I am glad you got answers and he is getting treatment. Hopefully he will feel better soon and be back on his way.

Pat yourself on the back for knowing something wasn't right and getting it taken care of!

FWIW My two girls on Remicade have never gotten c. diff but there are some on here who are prone to it. As a matter of fact, my oldest daughter shared a bed with. her cousin who came down with the flu, throwing up in the bed and my daughter was fine. She went on a mission trip with about 20 kids. They drove down in 10 passenger vans, slept in the same room together etc. About half of them came down with mono but not my daughter. Another time the whole family was down with a stomach bug but she was fine. She is actually the healthiest one in the family. Her younger sister on Remi is following in her footsteps.

 

[pdx]

I'm so sorry to hear about your son's UC diagnosis, and now c diff too. I don't have a lot to add to the above posts, except to say that my daughter took a long time to respond to Remicade initially, but once she did, it's worked well for her for almost 4 years now.

My daughter was very sick when diagnosed, so she needed a couple of dose increases on the Remicade, along with steroids and EEN as bridge therapies, and finally the addition of methotrexate. After 6 months, she was able to drop everything but Remicade and methotrexate.

Hang in there! I hope the c diff responds quickly to treatment, and that once that's gone, it will be easier to figure out exactly what else your son needs now.

 

[jchavira79]

Update: the biopsy they took showed no signs of infection so they believe it’s a flare. He’s been in the hospital this second time for 8 days. They are leaning towards removing the diseased portion of his colon. This is because he is not responding to the medications they’ve been giving him. 4 different antibiotics in addition to the remicade.

 

[crohnsinct]

Wait a second....he did or did not have C. Diff? What kind of biopsy? Did they do a scope? He is newly diagnosed and has only tried Remicade...are they not willing to switch to any of the other biologics before removing part of his colon? I know with UC removing the colon could in many instances take care of disease BUT you have to be 1000% sure it is really UC because colon removal is not an option for Crohn's and disease could show up elsewhere. I forget the actual statistic but there are a good number of UC patients who have their colon removed only to find out they actually had Crohn's. Before agreeing to surgery, I would get a second opinion at another major pediatric hospital with a well known IBD center.

When you say antibiotics aren't working are you referring to the C. Diff or UC. Antibiotics are not usually a treatment for UC in pediatric patients.

 

[pdx]

I don't want to second guess your doctors, since I don't know all the details of what's going on with your son, but it doesn't seem like very many treatments have been tried yet and I agree with CIC that surgery is a pretty drastic step unless there really is no other choice. You mentioned weaning off steroids in your first post. How long was your son on steroids that first time, and have your doctors tried using them again?

Are you at Seattle Children's Hospital?

 

[Maya142]

I would also get a second opinion before doing surgery. Have they upped his dose of Remicade? What dose is he on? You can go all the way up to 20 mg/kg every 4 weeks. That's known as "high dose Remicade." My daughter was on it for her arthritis.

And even if he is on the highest dose of Remicade that he can be given, there are other biologics. If he has UC, then Entyvio is a good choice. If he has Crohn's, Stelara may be an option.

Is he on an immunomodulator in addition to the Remicade? If not, adding Methotrexate may be a good next step.

EEN is also an option to get the inflammation to calm down. It can be done by drinking the formula or by using a feeding tube.

I would strongly urge you to seek out an opinion at one of the major pediatric IBD centers. The three best ones are Boston Children's, Cincinnati Children's and Children's Hospital of Philadelphia. If you want to stay on the West Coast, Stanford and Seattle Children's are options.

Surgery just seems very drastic for a child who has only been on one medication. It is now usually used as a last resort.