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Newly diagnosed 8 year old daughter, SCARED!!

Wed, October 29, 2014 4:37 PM

My 8 year old daughter was diagnosed yesterday with Crohn's. My husband and I are post in shock and so scared. We meet with the doctor next week to discuss treatment options. He mentioned something about EN(enteral nutrition) and this sounded really hopeful to me. Does anyone have experience with this, it's success, the SCD diet and treating Crohn's for as long as you can without medication? Any suggestions by anyone of where to begin, pointers would help. Right now I just cry everyday, trying to come to terms with the concept that my daughter has a lifelong disease which could involve several hospital visits, stays, surgeries, awful medications etc. The pain and heartbreak is too much to deal with. Is there a point where we won't feel so sad and hopeless?
Thank you!

alinard1074
Joined Oct 29, 2014

Tue, November 04, 2014 4:15 PM

Reply posted for alinard1074.

Our family went down the same path w/our daughter - she was 4 then. It is very overwhelming and I congratulate you on reaching out to this site....It had taken me years! There are a few things in hindsight I wish I did. First, stop the google overload - unfortunately all of the worse case scenario situations you really don't need to focus on. Start focusing on today; and deal with one day at a time - believe me, it is much more manageable that way.

Though my girl didn't go the ET route, I have heard of children doing well with it. SCD is very restrictive and may be even more difficult with a child. We met with a nutritionist staffed @our GI's office and learned various key components, eat whole mostly organic. Since Liz had "failure to thrive" we learned how to make every calorie count, chewing food well, smaller more frequent meals with small snacks in between work best for her too. We instituted a "food diary" which in the beginning I thought really, do I need this? It proved to be helpful in pinpointing the foods that were good and those that were not so much. It has been just over ten years and I can tell you it has been quite a journey. We don't look at it as a life sentence, because it's not, we've learned to accept it and have moved on. Of course we take medicine and supplements daily, see gi every 4 months now, used to be more frequent, and get regular labs.. We have our ups and downs, but everybody does. Once treatment began working, she began to thrive, now finally 70pct for height and 40 for weight, we've made it, we're on the charts!!

Best of luck to your family

lizzies mom
Joined Sep 9, 2009

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