One year since diagnosis

[KS Mom]

I am new to this forum but have visited the site many nights to see what others have experienced with Crohn's. My daughter, age 11, was diagnosed with Crohn's one year ago. She began with occasional stomach pains and diarrhea. Then, the pain became more frequent so we started with our pediatrician. Luckily we have been blessed with a fabulous pediatrician that immediately sent KS to a pediatric GI. After an upper GI and colonoscopy, I was shocked to hear of a Crohn's diagnosis. Two year's prior to this KS had experienced knee joint pain and diagnosed with Juvenile Rheumatoid Arthritis. I thought what else can this girl go through at such a young age. At the time her arthritis was under control & treated with weekly Enbrel injections.

Treatment began with Prednisone, Prilosec, Apriso. Then KS had to switch to weeky injections of Humira & Methotrexate. After 8 months we were finally able to ween KS off the prednisone! She did well for a while but had a flare up last month. So, back on prednisone! The amount & type of medicines do concern me but feel KS needs a good quality of life as a child. She is an avid dancer & and rehearses for about 8-10 hours per week. We did start meeting with a nutritionist to find what would work best for KS to decrease food irritants contributing to potential GI flares. KS is now on gluten free foods. She is a trooper but I wish I could take this from her. A child should not have to deal with this sort of thing!!!

I look forward to learning from everyone on the forum.

 

[Devynnsmom]

Hello KSmom and welcome to the forum. I have an 11 year old daughter who was *unoficially* diagnosed with Crohn's in 2009 (at 8 years old). Her diagnosis was changed to Ulcerative Colitis in Mar of 2012. I know exactly what you mean wishing you could take this from her. I have spent countless hours wishing the same thing. We have a parenting forum here, http://www.crohnsforum.com/forumdisplay.php?f=49 check it out. You will find lots of support and information.
I hope things calm down for KS and she is feeling better is no time.

 

[Farmwife]

Hi and welcome to the forum.
Sorry you find yourself making your way here.
I'm so happy to year that you had good doctors.
That seems to be the biggest hurdle for some people.
My Grace has Colitis, specifics of her disease are yet to be determine.
I hope you make your way over to the parents forum.
Lots of support, advice and even a laugh or two when needed!

 

[SarahBear]

Welcome to the forum, KS Mom!

I'm so sorry to hear what you and KS have gone through. It must be rough at that age, but it's great that she has a caring and supportive mother to get her through it!

Wishing you both the best!

 

[Stephyjane]

Hi KSmom, sorry to read about your daughter, I have a daughter who was diagnosed with Crohn's June2012 just before her 10th b'day. It has been a very bumpy road and are still in the process of getting her medications right and symptom free. She is also a keen dancer and has a question mark over her to whether she has Crohn's related arthritis.
It's fantastic how your daughter is carrying on with her interests and the children I read about on this forum amaze me with their strength. I hope your daughter improves quickly and the advice you can get from the parents on here has been a God send to me. Take care x