8year old son-should we try Remicade?

Hi my 8 year old son, was dx'd with Crohns in Nov 2013 after being admitted to ER with C Diff infection, despite never having been on antibiotic.
He has been on Pentasa with Mercaptopurine (6mp) for about 1 year. In Jan of this year his Dr decided to take him off 6mp and switch to Methorexate because his blood and stool work were still showing inflammation and anemia. Methotrxate was given orally due to sons severe phobia of needles so it took a little while to start working but in Mar we saw his Hgb in the normal range, for the first time in 18 months. Send rate, CRP, fecal Calprotectin and lactoferin all still elevated.
Our wonderful GI Dr had always told us that she is taking this milder approach due to Liam's very nervous disposition. She did also state that most Drs would treat more aggressively with Remicade.
Unfortunately Liam!s Dr has relocated but recommended another GI Dr who we saw last week and is very very nice and Liam took to him very well.
His labs labs still showing elevated Sed, CRP and fecal Calprotectin but he has not had diarrhea, vomiting, stomach pains or frequent bathroom trips since his first trip to ER in 2013. He actually seems very well except struggling to put on weight and easily gets tired.
His new Dr spent a good hour with us looking over his past notes and definitely said he should be on Remicade.his reasoning is that it would make him eat and hence put on weight, improve his Hgb and also heal the internal damage that we cannot see even bough it's not causing Liam pain, the labs show there is inflammation.
It all makes sense but when I see Liam racing around on the soccer field of jumping on the trampoline or I read other stories I feel like "if my son is doing his well, why do I want to put such a string drug in his body". Everything I read says that Remicade is for the treatment of non responsive or aggressive Crohns. Visibly my son seems not to fit this description.
Any thoughts greatly appreciated. So for the long post but felt I needed to give you a bit of a background.
Kind regards
Michelle Gillet
Mom of Liam aged 8years diagnosed just after his 7th BirthdY.
South Florida

Get a second, or even a third opinion!!!

Alexandria, are you still on Remicade?

First, I would stop the Pentasa. It's a waste of money for you and the insurance company. Studies have shown it's no better than placebo in treating Crohn's.

Second, where is his disease located? Small bowel? Colon? Both? Somewhere else? What have his colonoscopies shown? What have MRIs shown? The blood work (esr and crp) along with fecal calprotectin can give you some indication of what's going on inside, but they never give a full picture.

Third, what dose of imuran was he on? Did the doctor run tests to see whether his blood levels were in the therapeutic range? Sometimes imuran appears not to be working simply because the person isn't taking enough. And there is now a blood test to measure levels of the metabolites to see whether enough is being taken.

But if you don't want to go back to that, I understand. Methotrexate might be just as effective, but it doesn't have as much study data to really know for sure.

As for moving up to Remicade or Humira, that's always a tough call. I go back to what I asked earlier: How do his insides actually look on scopes and MRIs? And secondly, how is his growth? For a young boy or girl, or one in adolescence, one of the most important parameters to measure is actually his growth. It's probably a better indicator to watch than esr or crp.

If his scopes and scans look pretty good and his growth is on track, then Remicade may or may not be needed. But if his growth is falling behind, and/or his scopes and scans continue to look bad even while on the methotrexate, then I think adding Remicade (or Humira, as suggested above), is a good idea.

Normally it would be a no-brainer to opt for Remicade. Remicade is the current state of the art treatment for Crohn's, and will likely continue to be for the next several years.

The dilemma in your son's case, is his age. There are two schools of thought on treatment. There's the top down approach, or the work your way up approach.

Most that have been through years of ineffective treatments, will tell you that they wish they had opted for the top down approach, which would halt any disease progression, and save any long term damage.

It's a tough decision, but I would recommend more diagnostics. Another colonoscopy with biopsies, and an MRE or SBFT.

You really need to get an exacting current status of the disease before you make your decision.

Also as previously mentioned, make sure you inquire if he was at the therapeautic level for Imuran. If he wasn't then he may do fine once he is.

NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO

Meeshy said...
Thanks everyone for your input.
Beave, Is Imuran, the same as 6mp ? If yes then, yes he was at the correct level. Dr tested it every month.
His original scopes showed his esophagus and colon were in pretty bad shape but a year later everything is clear accept the caecum.
Is there another name for the caecum as I have never read anyone mentioned that area before.
The 2 Drs that we have seen are both great but have opposite schools of thought. 1 is top down and the other is bottoms up.
I am beginning to see that neither is right or wrong.
My next question is once you start Remicade and hopefully achieve remission via blood, stools and scope, do you stop taking Remicade?

Imuran (azathioprine) is not exactly the same as 6mp, but it's very closely related. Imuran gets metabolized by the liver into 6mp (and then on to other molecules). So they're practically equivalent. Taking either one has the same effects for the majority of people (some exceptions seem to to tolerate one better than the other for reasons not understood).

The cecum is right near the juncture of the colon and small intestine - a very common area for Crohn's disease to present itself. The ileocecal valve - the "doorway" that connects the small intestine to the colon - is right next to the cecum and a commonly affected area.

You are right that the two schools of thought both have merit. The key is not to follow either all the time, but instead to do what is dictated by your son's individual condition, disease severity and activity, growth rate, and response to medications.

Once you start Remicade, assuming it's working, you stay on it as long as you tolerate it and get benefit from it. Stopping it will often lead to the disease coming right back; what's more, stopping it and restarting it increases odds of having a reaction to it.

In most studies that I have seen, the most serious side effects, i.e. lymphoma, have been when Remicade was used in conjunction with another immuno-modulator. That is why we had our son off of immuran for two years before starting Remi.

Hi Meeshy:
Regarding whether to put your young son, Liam, on Remicade, I suggest you read what Dr. Thomas Borody, the gastroenterologist with the highest remission rate for Crohn's in the world, has to say about such biologic drugs being used as a first-line of treatment for children.

Dr. Borody's views on this matter are part of a 13,000-word story posted this week on www.BestStory.ca, Canada's only ad-free, long-form journalism site. You can read a summary about the latest treatment information contained in this new piece of journalism about Crohn's disease at:

https://www.beststory.ca/?page=fromeditor