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my 9 yr old and methotrexate

Thu, October 15, 2009 7:05 PM

My 9 yr old son has been taking 6MP for ~4 months. While the crohns issues seem to be under control the side effects, nightly headaches, constant nauseau and lack of appetite are pretty strong. My Dr is recommending we switch to methotrexate.

Im debating between methotexate as recommended by the dr and trying pentasa combined with a low gluten /carb diet. This option isnt one necessarily supported by our Dr. But as i understand it, the 5 ASAs are so much more mild and i keep reading so many success stories as a result of modified diets

If it were me, i'd take the risk and try the milder med even if not support by my Dr. But this is my son so im alot more hesitant.

has anyone done this - gone against the recommendation of their ped? anyone with experience with Methotrexate?

any and all advice is welcome

thanks

jacksmother
Joined Sep 14, 2009

Sat, October 17, 2009 12:00 AM

Reply posted for jacksmother.

Both of my girls (4 & 6 years old) are now on methotrexate and doing well (but they did have some side effects initally until we got the dose right). The immune compromised part isn't easy, but they are better than they were on Pentasa alone. But we didn't try it with the diet, and I do believe diet can help, we just haven't been able to get the diet right yet!

hope this helps and good luck.

Dom

daniellasmom
Joined Apr 11, 2008

Fri, October 16, 2009 12:00 AM

Reply posted for jacksmother.

I think you need a physician you can talk openly with and whose judgment you trust.

My daughter took Methotrexate when she was 3 for JRA. She had trouble with it. Conversely, after the Crohn's dx in June of this year, she has been on 6MP and has no side effects from the 6MP. Maybe tolerating one & not the other is common??? Not sure. Maybe at least trying the switch is worth something.

Either way, I hope your son does well.

azmom
Joined Jul 20, 2009

Fri, October 16, 2009 12:00 AM

Reply posted for jacksmother.

Althoug I do not have any experience with methotrexate, I am a parent of a Crohns patient and can say....YES, I have gone against the recommendations of our dr.

I do not make a habbit to pick a fight, and I do choose my battles carefully, but they are our kids. There were times where my daughter wasn't "thriving" as much as the official "charts" would like and steroids were recommended. I gave it much thought/consideration and decided NO. My thinking was that hey, she is holding her own. Tolerating food, reg. bms, active, doing well in school.........why? Who cares what the "charts" think, maybe she is going to be petite! I wanted to keep the roids out of the picture until (if) we ever really, really needed them. In six years of dealing with this, we never have.

I hope you have a great relationship with the specialist and can actually have your voice heard. This way, the dr and you can work on maybe an alternative choice and set reasonable trial period and see how things progress.

You are in a situation all of us have been in at one point or another and we understand.

My best to you and your family.

Lizzies Mom

lizzies mom
Joined Sep 9, 2009

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