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TRAPS
Discussion and support for everyone enrolled in a TRAPS study at the NIH and their family members.
Anyone out there RECENTLY with TRAPS diagnosis?
- By RushRx · New reply May 9, 2009
- 5 replies
- Hey, Just joined this website, but then did not write for awhile because I was looking at a lot of older discussions. Just wondering if there is anyone out there that has recently seen Dr. K and is being ...
Is there anyone out there taking Annikinra and has it helped???
- By Kare · New reply February 9, 2009
- 7 replies
- My son was diagnosed with TRAPS at almost four years of age. He is now six and living a drastically improved life, since he started Etanercept. That being said, he has been hospitalized three times in ...
3 Year Old son with TRAPS and a Lymphatic Malformation
- By noahdavidsjourney · Posted January 24, 2009
- 0 replies
- My 3-year-old son just got diagnosed with TRAPS last August. He has also had a lymphatic malformation since birth. I just found this site listed on the Australia Yahoo group TRAPS Support. I haven't been ...
Just found out my son has the gene
- By kim2 · New reply January 13, 2009
- 2 replies
- my name is kim and i have a 10 year old little boy he has alps and i just found out he has the gene for traps.let me start from the begening when he was probably 6 mounths he was always sick and a lot ...
What Works for TRAPS
- By Momofthree · Posted August 21, 2008
- 0 replies
- I'll spare a lot of details. My son (18 months) was just DX with TRAPS. The MD's here are shocked and said they will start sending us to speacailst to "treat" this disease. I am sure my other two boys ...
Do your child's symptoms change over time?
- By Jessie1 · New reply November 19, 2007
- 1 reply
- My son was diagnosed with TRAPS at age 6 after suffering from symptoms since he was approximately 6months old. He was in the hospital many times and tested for everything under the sun. I just recently ...
New diagnosis of TRAPS
- By lineysmom · New reply October 6, 2007
- 8 replies
- Hi, I am glad to have found this place. My Daughter was just diagnosed with TRAPS. I am trying to read all the literature I can find. I was a little shocked by the diagnosis because her neuro doc was ...
middle ear infections
- By althea · New reply February 20, 2007
- 5 replies
- I am interested to find out if anyone else affected by TRAPS has a significant history of middle ear infections ...
Any Advice Please
- By Gcbec · New reply January 29, 2007
- 5 replies
- Hello, I wrote in FMF area in May and wrote a follow up yesterday. I dont even know where to begin, to make a very long story short. My son was having problems with his health and was having "episodes ...
Trying to find out how this disorder may change
- By Kare · New reply January 8, 2007
- 35 replies
- Hello everyone, I just recently found this site and I can't believe that others have the same stories as our family. My child has just recently been diagnosed with Traps. He is three, soon to be four ...
A new TRAPS related resource
- By fad · Posted November 7, 2006
- 0 replies
- Hi, My name is Fran, I live in Sydney Australia and I have a 2 year old daughter who was diagnosed with TRAPS this year. My family and I have found the Children's Inn discussion board very helpful, especially ...
Exercise, sleep deprivation, and TRAPS
- By althea · New reply October 18, 2006
- 7 replies
- I'd like to hear from anyone who has observations regarding any relationship between physical exertion (like PE class or sports related) or sleep deprivation and the coincident arrival of a TRAPS fever ...
Traps
- By birdnbee · New reply September 9, 2006
- 11 replies
- I have never talked to any other person about TRAPS. I really would appreciated view from someone else. TRAPS trouble can be really overwhelming. Barbara ...
Welcome
- By ChildrensInn1 · Posted March 16, 2006
- 0 replies
- Dear parents, caregivers and Children's Inn residents: Welcome to the Periodic Fever Syndrome- TRAPS discussion group! By Inn resident demand, we can now help you make connections to other families who ...
