Advice
Fri, October 30, 2009 10:24 PM
I am new to the CCFA so I will share a little bit of my story. My son is now 4 and has chrones. We have been batteling this since he was 3 months w/elemental diet (sub clazian and elemental formula), steroids, Pentasa, Colazol, Entocot... He has occasional stomach pain, bloody stools, anemia that comes and goes - but really appears very healthy. Every scope that he has done shows ulcerations from his esophagus through his rectum - we recently spent a couple of weeks at the Mayo IBD clinic in Rochester - after more test and doctor visits their recommendation is to do methotrxate injection (we can not do 6mp b/c my son does not make the enzyme) and his NOD2/CARD15 results where consistent w/severe disease early onset.
I want to make sure that I know what I am getting into and have done everything else possible. I am wondering if anyone has done methotrazate injections with a preschooler.
Also I have heard things back and forth on diet and want to know what success people have had and what you eliminate - my son's diet has been very restrictive (no dairy, soy, preservatives...) and we have not seen anything different even when he has been on elemental formulas only -however I would love to get input on specific diets that seem to help. Thank you!
eli momJoined Oct 30, 2009
Tue, November 10, 2009 1:00 AM
Reply posted for Eli mom.
My daughter was very young too when she first began with symptoms of CD.
Through the years she has been on a low fiber/low residue diet. She isn't lactose intollerant so that is one big plus, but she does have sensitivity to many different foods.
Her Crohns is currently being maintained on Sulfasalazine, Folic Acid, and a few vitamin supplements: Calcium, D, Omega 3.
I think a big part of the day-to-day living is I do all of the cooking and baking, organic for the most part, which eliminates all of the preservatives, additives you get with packaged goods. It also allows for me to adjust the recipes for our needs.....substituting here and there when necessary.
I don't have any experience with the injections, but have heard of great success.
Good luck
Lizzies Mom
Joined Sep 9, 2009
Fri, October 30, 2009 11:40 PM
Reply posted for Eli mom.
Hi,
My son is almost 6 and was dx this past Feb. with CD. He also has it from top to bottom like your son. We see a dr. up in LA at Cedars and she was very firm on starting him on Remicade right off - NO predisone. It was very hard to jump right in but at 30 lbs we didn't have much of a choice. He built up antibodies after 4 treatments and we had to move on.
We were headed to Humeira inj. but when we went in for a consult our Ped GI said he's healing and I think he would do great with MTX Inj. which is once a week. Not happy again but felt better that MTX is a step down from Humeria. We've been on weekly inj. now for 3 months. every Friday night is still hard but have to say the quality of life my son has is great. You would never know he has any issues. He's up to 38 lbs and full of energy. I try not to read into the long term effects and just think of the here and now and it helps.
As for diet the only thing we changed was no eating popcorn which was his FAV. We also took out raw carrots which he ate once in awhile. His eating is good some days and not so good other days. I just try to get something in him all day long.
I don't get on this site much so if you would like more info. or talk more about MTX. you can email me at riegers5@att.net
Good Luck,W
Wendy
riegers5Joined Mar 7, 2009
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