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broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 2/8/2008 5:56 PM (GMT -7)   
I read your post regarding HGH.  I must say I am amazed that your daughter has Crohn's and Turner's Syndrome.  I have moderate to severe Crohn's and I have a daughter that is 29 year's old that has Turner's Syndrome.  She did the growth hormone up at NIH in Bethesda, Maryland for about 4 years.  We did not discover her Turner's until she was 12 and the growth platlets start shutting down at age 16.  However, we feel she did benefit somewhat from the HGH!  Would love to have more contact with you both about the CD & Crohns!!!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


picklechic
Regular Member


Date Joined Feb 2008
Total Posts : 32
   Posted 2/12/2008 6:39 PM (GMT -7)   
I just saw this! Sorry!
 
Yes, my 2.5 year old daughter has mosaic Turner's Syndrome. From what I have read, Crohn's is more common in TS girls. I haven't been able to find anyone else out there with both of TS and Crohn's though. I would love to talk to you more about it!

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 2/12/2008 9:38 PM (GMT -7)   
picklechic,

have you looked at diet changes for your little girl to help with her crohns? It will help alleviate her symptoms. There are two main diets that alot of ppl with CD follow, the Maker's Diet and the Specific Carbohydrate Diet.

I suggest this because I understand a parent would feel so desperate to help their suffering child. Alot of parents here who have kids with CD try the maker's diet. It can make a huge difference. There are lots of people here on it, and lots of posts about it.

I hope your precious child will get better and stay better real soon.

picklechic
Regular Member


Date Joined Feb 2008
Total Posts : 32
   Posted 2/13/2008 6:46 AM (GMT -7)   
Thank you, Roni! I will definately look into those diets for my daughter. She is symptom free right now so we are very thankful for that. Being 2, she is naturally a picky eater and that has only been made worse by her Crohn's. It is hard to get her to eat anything beyond her normal few favorites. But hopefully in the future, she will grow out of that and we can try other diets.

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 2/13/2008 1:18 PM (GMT -7)   

I know what you mean about picky eaters! My child is so picky!

The only meat my toddler will eat is hotdogs! I hated giving them to him because of all the chemicals in them, and FINALLY I found all natural chicken and beef hot dogs with only meat and spices in them.

I try and get my child to eat different things but he won't, so then I try and find more natural versions of the stuff he loves. I also recently switched from reg. mac n cheese to one that has no preservatives, artificial flavours, or colours.

I can't wait for the day when he asks me for a steak or burger or pizza!

 

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