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13 y.o.: remission for 3 years!


Sun, July 01, 2012 8:49 AM

Like many you you, we went through the emotional heartbreak of seeing our child very ill for many months. She had an initial diagnosis of severe pan Crohn's colitis and gastroduodenal disease.  We went through the gamut of p.o. & I.V. medications, allergic reactions, terrible side effects and prednisone bloat.  Take heart, there is relief in site!  Fortunately there are many drug options available and the right combination can be found.  She has been blessed with few problems for 3 years (taking MTX weekly now.) Her peds GI is both "surprised and pleased" that she has maintained remission this long. As parents, we asked her to manage her own condition from the beginning (with our help if she wants it.  Yes, it took me a year to resist asking about her BM's).  We refused to engage in power struggles about meds and food.  She learned on her own, the relationship between how meds help and certain foods don't help. We took advantage of Camp Oasis in Michigan (4th year).  The staff is awesome and they do a wonderful job helping kids self manage. I keep my FMLA paperwork active each year as a precaution. 
Encourage and healthy life style and help your child to stay active.  We have always supported the theory that regular exercise helps boost the immune system.  Our daughter plays school sports and did club volleyball year round.  She is a normal BMI and the only problem we are battling is low Vit. D levels.

Looking forward to 8th grade and normal teenage woes smiley  

FPO ibdamom
Joined Jul 4, 2008

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FPO jolezytocu
Joined May 27, 2021

Sat, July 07, 2012 3:20 PM

 Reply posted for Lizzies Mom.

Thank you very much! 

FPO loving mother
Joined Nov 28, 2008

Thu, July 05, 2012 8:38 PM

 Reply posted for loving mother.

Camp Oasis is the single best place to insist the kids go.  I know the feeling of not wanting to send them off all too well.  Before Camp Oasis, she had only slept over at her grandparents house twice!   I was a nervous wreck, had a large lump in my throat saying goodbye, and sat in the parking lot and cried the first time the bus departed.   Guess what, she had the time of her life!  This will be her fourth year and she can't wait!   It is a place where the kids feel they "belong". 

FPO lizzies mom
Joined Sep 9, 2009

Wed, July 04, 2012 2:04 PM

Thank you for the encouraging words.  My son was diagnosed with Crohns at age 7 in 2008.  He is doing very well. 
He is going to Camp Oasis for the first time next week also Michigan!  He is very excited but I am nervous.  I know it will be
a good experience for him to see other kids like himself. Take care!

FPO loving mother
Joined Nov 28, 2008

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