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TRAPS Despiration
- By MrsMikeyFelter · New reply 6:06 am
- Discussion in TRAPS · 4 replies
- My daughter, Elaina (soon to be 3), was officially diagnosed with TRAPS this summer. She started showing signs at 10 months. Her condition seems to be quite severe, even having an episode that lasted ...
TRAPS - a father from India, Where to get the test?
- By Bappaditya · New reply 12:43 am
- Discussion in TRAPS · 5 replies
- Dear All, My son, 5 years of age, has been suffering from recurrent fever in a gap of 2-3 months, and the fever followed by skin rashes... Extremely worried we went to Christian Medical College, Vellore ...
NIH wait
- By MrsMikeyFelter · Posted yesterday at 3:59 pm
- Discussion in TRAPS · 0 replies
- How long were you on the waiting list before you got an appointment at the NIH? We have been on the list for almost 2 years now. Elaina has only had her diagnosis for about 6 months ...
A Father from India
- By Bappaditya · Posted February 6, 2010
- Discussion in TRAPS · 0 replies
- My 5 year old Son has is suspected to have TRAPS or PFAPA!! Where can I get the gene test donr? Please HELP ...
The Parents Cry Alone
- By JLH1 · New reply February 6, 2010
- Journal · 4 replies
- There is a family we met through CarePages around the same time my daughter Ashley's illness was first diagnosed. This family includes a teenage girl who like Ashley, was also diagnosed with osteo sarcoma ...
Today at the INN: February 3
Today at the INN: February 2
Today at the INN: February 2
Today at the INN: January 28
another visit
- By Jordensmom · New reply January 28, 2010
- Journal · 1 reply
- I have found some quiet time here at the NIH early this morning and thought I would catch up on this journal. We have gone almost 1 year without seeing the inside of an emergency room! the colchicine ...
Today at the INN: January 27
Today at the INN: January 26
Clinical Trails
- By Stephanie123 · New reply January 25, 2010
- Discussion in Familial Mediterranean fever (FMF) · 4 replies
- My son has FMF and he is 5 years old. We are currently doing a clinical trail from the Cleveland Clinic in Ohio with the injections drug rilonacept...is anyone else currently this study also ...
Contradictions
- By JLH1 · New reply January 21, 2010
- Journal · 2 replies
- I wrote the folllowing "post" for my daughter's CarePage (www.carepages.com AshleyHendrick). I thought others might also relate so I decided to post it here as well. Have you ever wondered what thoughts ...
Today at the INN: January 21
ALPS
Today at the INN: January 20
Today at the INN: January 19
Any one else with ALPS?
Normal Living
- By JLH1 · New reply January 15, 2010
- Journal · 7 replies
- I wrote the following essay for my daughter's CarePage some time ago (www.carepages.com AshleyHendrick). I continue to write on her page today, as our lives after cancer go on. Shortly after my daughters ...
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The Children's Inn at NIH Support Community connects patients, families, friends and caregivers for support and inspiration. The Children's Inn at NIH Support Community is sponsored by The Children's Inn at NIH in partnership with Inspire.