Infantile Crohn's
Fri, February 20, 2015 7:06 PM
My daughter was diagnosed with Crohn's disease at one year of age. She's 19 months old now and having repeated inflammation since July 2014. She's been off and on steroids for 7 months now and we're about to start her on Methotrexate. I haven't changed her diet and offer her a variety of foods. I'm wondering what other parents have experienced with a child this young. If we could manage her inflammation with diet alone I'd be happier doing that than trying out so many different medicines with side effects. Any insight?! Much appreciated! Thanks, Heather
Joined Feb 20, 2015
Tue, April 14, 2015 11:44 AM
Hi Heather. I know how you feel! Our son was diagnosed with mild to moderate Crohn's at 2 1/2 years old. He is now 5 years old. We've tried a variety of things to try to ease his symptoms and inflammation. Some have been fairly/temporarily successful and some not. We've tried exhausting all of the mildest forms of medication - without much success. For about a year we eliminated gluten and dairy from his diet. However, it was just too difficult to tell if it made much of a difference. We have not tried the SCD. He now eats a healthy diet that includes dairy and gluten but we avoid heavily processed foods. We've had the most success with a daily dose of an antibiotic called Cefdinir. It relieves his symptoms immediately and sometimes targets his inflammation (his CalProtectin numbers have been both low and high while on it). While on Cefdinir he would experience "remission" for several months but then a flare would occur every four months or so. We are now reluctantly considering putting him on Imuran (an immunomodulator) as we are worried we aren't doing enough for his inflammation. From the beginning, one of our main concerns has been (and continues to be) the side effects of these medications on our very young son. Best of luck, you are not alone.
Jill
jillcgJoined Mar 22, 2015
Sat, February 21, 2015 4:57 PM
Reply posted for heatherm7.
Sending you tons of support as well... We are just starting this process. I'm still learning the medications and the diet recommendations. There seems very little out there for VEO kids, and the lack of information is hard. We trust our GI doctor, too, but it is hard to know what is right. Be strong and take care.
kyasarineJoined Feb 21, 2015
Sat, February 21, 2015 2:12 PM
Reply posted for kyasarine.
Thanks for your response! It is incredibly scary to be giving these medications to children so young. I do trust her GI doctor, but of course have concerns. It seems like people's personal stories involve success with diet changes, but the medical sites and doctors don't have science/studies behind diet alone to recommend this as a complete form of therapy. I'm trying not to overload myself with info on the web but am desperate to get some answers. My heart just aches for children so helpless having to deal with this. And for the parents too! Sending you support and empathy.
Joined Feb 20, 2015
Sat, February 21, 2015 8:57 AM
Reply posted for heatherm7.
Hello - I am in a similar place as you. Our daughter was just diagnosed at age 2. We are on prednisone and are about to start 6mp. We have worked to alter her diet but it is hard to know what is working / what isn't. I'm concerned about the long term effects of being on medication, especially when starting so young...
kyasarineJoined Feb 21, 2015
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