TRAPS
Discussion and support for everyone enrolled in a TRAPS study at the NIH and their family members.
Discussions
Kids with TRAPS in NH
- By TRAPS · New reply November 15, 2012
- 2 replies
- Looking for other families in NH that have kids with TRAPS. My son is turning 11 and was diagnosed with this disorder at age 7. He has been experiencing the symptoms since age 3. Has been put on Colcyrs ...
Newly Diagnosed TRAPS
- By jkubizna · New reply August 9, 2012
- 1 reply
- My 2 1/2 year old daughter was just diagnosed with TRAPS and had her first injection of Enbrel yesterday. She has been having episodes of fever for the last year. She did have genetic testing done with ...
Girls with TRAPS
- By Jessie1 · Posted December 3, 2011
- 0 replies
- I have an 11 yr old girl who I suspect has TRAPS. Her brother was diagnosed at age 6 and had severe symptoms and flares. He is now 16 and continues on enbrel 2x weekly and uses daily Kineret injections ...
Traps young sufferers
- By rach93 · Posted November 23, 2011
- 0 replies
- Hi , Im an 18 year old girl living in Ireland and sitting my last year in school at the moment and have been diagnosed with TRAPS for the last 3 years, been on enbrel for nearly 2 years now but as of ...
periodic fevers
- By alexaniko · New reply September 24, 2011
- 1 reply
- HI, My 13 year old son has some type of fever syndrome. First they said FMF, now they say TRAPS or CRMO, even though his DNA tests came back negative for all periodic fevers. He has some of the symptoms ...
TRAPS R92Q mutation - treatments / prevention?
- By mom_traps · New reply January 29, 2011
- 2 replies
- My 17 year old daughter was diagnosed with TRAPS at NIH in 2008 and saw Dr Kastner. For the past 3 years, she has taken prednisone when she has flares. Ove the last year her symptoms have changed - fevers ...
Looking for a doctor in MA
- By mom_traps · Posted December 22, 2010
- 0 replies
- We need a local doctor (rheumatologist) to see in between visits to Kastner to help manage symptoms. Our current doctor has lost interest once we confirmed the diagnosis. Anyone have a suggestion for ...
R-92Q, The Misunderstood Mutation
- By marylouise · New reply September 9, 2010
- 5 replies
- I am perplexed about the R-92Q mutation. I heard it said that this mutation results in a milder form of TRAPS. That has not been my daughter's experience. It has caused debilitating symptoms in her life ...
school
- By silky · Posted July 31, 2010
- 0 replies
- I am concerned about my daughter starting preschool this year. She has TRAPS and is on Enbrel injections, so she is unable to recieve her live vacines. She is not supposed to be around sick kids, and ...
another new TRAPS support group
- By addax · Posted April 29, 2010
- 0 replies
- If anyone wants yet another place to meet people...an IRL adult friend of a friend who also has TRAPS has started a TRAPS support and awareness group on facebook. If you're already on FB, you can find ...
Fingernail symptoms
- By PsTraps · New reply April 29, 2010
- 4 replies
- Does anybody notice any fingernail peeling after an episode of traps ...
Anyone out there RECENTLY with TRAPS diagnosis?
- By RushRx · New reply April 28, 2010
- 25 replies
- Stephen has a confirmed diagnosis of TRAPS. New mutation found. Saw Dr. K last year and now seeing him again at the end of March. Have yet to put him on Enbrel. We just see it as a last resort. I don't ...
TRAPS - passing out episodes?
- By MrsMikeyFelter · New reply April 26, 2010
- 2 replies
- My 3 year old, Elaina, who has been diagnosed with TRAPS, has had 3 episodes of passing out. She is becoming completely unconscious with rigid muscles for up to an hour and a half. They think she may ...
TRAPS - a father from India, Where to get the test?
- By Bappaditya · New reply April 25, 2010
- 7 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 · New reply April 25, 2010
- 11 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 ...
TRAPS Despiration
- By MrsMikeyFelter · New reply February 15, 2010
- 13 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 ...
A Father from India
- By Bappaditya · Posted February 6, 2010
- 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 ...
Traps
- By birdnbee · New reply November 20, 2009
- 13 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 ...
Is there anyone out there taking Annikinra and has it helped???
- By Kare · New reply September 6, 2009
- 12 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 · New reply September 5, 2009
- 1 reply
- 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 ...
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