Looking for a good pediatric IBD specialist in and around Detroit

[momof8yrold]

Hi,

My son is diagnosed with moderate-severe Crohn's 6 month back. He was put on a course of steroids and got admitted for IV steroids too. But, his symptoms have not improved. Now, doctor wants us to try Remicade. We are basically from India and we are in Michigan from the last 4 years. We might have to move back to India and remicade is not covered in the insurance in India. Also, without trying the 6mp or Imuran, I don't want the doctor to start Remicade.

His Crohn's is only in the colon. He has tapered prednisone and he's on Pentasa (500mg 2x a day), Canasa (1g at night), Flagyl (250mg, 2x a day) and Prilosec(20mg, in the morning). He's currently seeing the doctor DMC Children's Hospital. I want to get a second opinion. may be from UoFM. Any recommendations for the pediatric IBD specialists?

Also, I want to try elemental nutrition before jumping to Remicade. Your inputs please...:sign0085:

 

[pdx]

My daughter had good success with EEN via NG tube, but it was used in conjunction with maintenance drugs (Remicade and methotrexate). EEN might be a good way for you to avoid another round of prednisone as you try another maintenance med.

My daughter has done very well on Remicade and MTX, but I can understand your concern, if you won't have access to it in India.

I hope that you find something that works well for your son very soon, and that he starts feeling better.

 

[Pilgrim]

Our daughter had very good success with 6 week segments of Exclusive Enteral Nutrition to induce remission.

Unfortunately once we reintroduced food both times she quickly relapsed (within two weeks).

From our experience and those I've read here on the board, it's good to have a long term maintenance med plan.

Unfortunately, it can be a trial and error process that takes some time.

 

[Maya142]

We lived in India for a while and still visit often. We have seen rheumatologists there and they do treat with biologics if necessary (last we heard Remicade was available there and Humira was going to become available - that was a few years ago), however, because of the TB risk they are very hesitant to use biologics for long-term (also because of the expense). They do definitely use MTX for various kinds of arthritis there but not sure about Crohn's.

When we considered moving back, two rheumatologists told us that biologics were the best chance for our girls to live normal lives and that since we couldn't really keep them on biologics in India, we shouldn't move back. We are lucky enough that my husband's job is flexible and so chose to stay here.

I've never actually met anyone with Crohn's in India, but I'm guessing your best bet is 6MP or Imuran - they are old drugs and probably are more easily available there.

Good luck!!

 

[crohnsinct]

OK never mind my post on your other thread...Maya is the expert!

 

[Maya142]

:lol: CIC.

momof8yrold I'm going to ask my sister-in-law about the availability of biologics there now, since the last time I asked was 2012 and it's likely things have changed a lot since then. She has rheumatoid arthritis and the last time we spoke about she said that she was told that they often give biologics for a couple months or even as a one time dose --one shot of Enbrel for example (Enbrel is also an Anti-TNF used for RA and AS but not IBD). In contrast, in the US and Europe, once you're on a biologic you stay on it till it stops working - by stopping and starting many times you risk building antibodies. Anyway, she is on MTX now and has never been prescribed a biologic even though she has pretty bad RA.

I would also guess it depends on where you'd move - a big city might have more options in terms of doctors and treatments.

 

[momof8yrold]

Thanks a lot Maya142 for your detailed reply. We finally had to listen to the doctors. My son got his first dose of Remicade this afternoon. Getting the inflammation in control at this moment was more important.

Now that we started remicade, I have other questions running around in my mind.
Did you take your kids to India while they were on a biologic? What measures should I take whenever I decide to travel with him to India (on a trip for 4-5 weeks). We are planning to go to India next year to meet our family.

 

[Maya142]

Yes, we have taken both my girls to India, several times. Most of our trips were made when they were on injectable biologics (Humira/Enbrel/Simponi) and we just took them with us (scary on such a long flight!).

Our rheumatologist told us that we'd have to repeat the TB test when they came back, but other than that we didn't really do anything special. I did have them stay away from crowded area (markets etc.) but that may have just been me being a paranoid mom! They wanted to visit an orphanage that their friends volunteered at, to play with the kids, but I thought that was too much of a risk. Stuff like that.

Besides that, we're careful about water and food but that's really it.

When my daughters were on Remicade, we just timed traveling so that we went right after an infusion or in the middle of a cycle. It wasn't that hard, because M only had infusions every four or five weeks and we only go for 2-3 weeks. Some kids have infusions every 6-8 weeks, it really depends what your kiddo needs. You'd have to know his schedule (and by then, you'll have it figured out) before getting your tickets.

We have never tried to do infusions there, though I believe Remicade is available there. I have no idea how that would work with your insurance though.

I'm glad he finally started Remicade and I hope it works wonders!