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Walter
  • By Walter · New reply 10:27 am
  • Journal · 35 replies
  • Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...

Why are we here?

Brian
  • By Brian · New reply November 28, 2008
  • Journal · 134 replies
  • When we started this community, each of us faced important health issues in our lives. Some of us have family members with medical conditions. Many of us have medical conditions of our own. All of us ...

Join Educate Inn for Thanksgiving Poems

BKuz
  • By BKuz · Posted November 25, 2008
  • Journal · 0 replies
  • I hope you can join us today, Weds Nov. 26, up in the Bistro area at 7pm as we come together to try writing new types of poems about the things we are most thankful for. There will also be fun thanksgiving ...

Join Educate Inn tomorrow for Thanksgiving Poems

BKuz
  • By BKuz · Posted November 25, 2008
  • Discussion in General · 0 replies
  • I hope you can join us today, Weds Nov. 26, up in the Bistro area at 7pm as we come together to try writing new types of poems about the things we are most thankful for. There will also be fun thanksgiving ...

worried mom

bonn250
  • By bonn250 · New reply November 24, 2008
  • Journal · 4 replies
  • my 7 year old daughter has had fevers every4-6 weeks since she was 4.5 years old she also has swollen lymph nodes,mouth ulcers,rashes,& joint pain. This last 7-10 days. The Drs. think it might be hibernian ...

Periodic Fever Syndrome Conventions?

rybrans07
  • By rybrans07 · New reply November 24, 2008
  • Journal · 5 replies
  • Hi my name is Kim and my daughter Sarah has FMF. I read on someone else's journal that there are Conventions for families dealing with Periodic Fever Syndromes to get together for the weekend. This journal ...

Still going strong!

Jordensmom
  • By Jordensmom · Posted November 24, 2008
  • Journal · 0 replies
  • Wow, the last few months have been so unbeleivable. In June Doctor Goldbach-Mansky increased Jordens dose of colchicine by .3 mg/day, and the difference is incredible. Jordens last HIGH fever was at the ...

New feature: video!

Brian
  • By Brian · New reply November 23, 2008
  • Journal · 24 replies
  • I am pleased to announce that we have updated Inspire to support video. You can now share a video of yourself, videos that you find inspirational or informative, and more. I've included one of myself ...

More Native American Heritage Month Facts

dmlw1
  • By dmlw1 · Posted November 21, 2008
  • Discussion in Alumni · 0 replies
  • Did you know: that Senator Ben Nighthorse Campbell was captain of the US Olympic judo team in 1964 and was a three-time U.S. judo champion. that there are still over 200 Indian and Eskimo tribes in the ...

More Native American Heritage Month Facts

dmlw1
  • By dmlw1 · Posted November 21, 2008
  • Discussion in General · 0 replies
  • Did you know: that Senator Ben Nighthorse Campbell was captain of the US Olympic judo team in 1964 and was a three-time U.S. judo champion. that there are still over 200 Indian and Eskimo tribes in the ...

My 5 1/2 year old son

Map
  • By Map · New reply November 21, 2008
  • Discussion in PFAPA · 1 reply
  • Hi, I have a 5 1/2 year old son who was born three weeks early and has had therapy on and off since he was born due to Hypotonia and Coordination Disorder. He has had fevers on and off since he was 2 ...

ALPS

lroublick
  • By lroublick · New reply November 21, 2008
  • Discussion in General · 3 replies
  • hi..I am a parent of an 8 year old girl who was diagnosed with ALPS at the age of 2...I have yet to meet or speak with other parents who have a child/children with this disease. Hoping to conect with ...

Sarah has protein in her urine as well as blood-anxiety ridden Mom

rybrans07
  • By rybrans07 · New reply November 19, 2008
  • Discussion in Familial Mediterranean fever (FMF) · 7 replies
  • Today I received the phone call none of us want to hear. Sarah's doctor called to tell me that her urine was positive for proteins and blood. He didn't say much else except that he was going to discuss ...

Periodic Fever Conventions?

rybrans07
  • By rybrans07 · Posted November 17, 2008
  • Discussion in Familial Mediterranean fever (FMF) · 0 replies
  • Hi my name is Kim and my daughter Sarah has FMF. I read on someone else's journal that there are Conventions for families dealing with Periodic Fever Syndromes to get together for the weekend. This journal ...

Sharing our Experiences

rybrans07
  • By rybrans07 · Posted November 17, 2008
  • Discussion in Familial Mediterranean fever (FMF) · 0 replies
  • My daughter Sarah is a patient at NIH as well as Children's Hospital of Philadelphia. After 2 long years of sickness she was finally diagnosed with FMF in April 2006 by the Doctors at CHOP (Children's ...

Feeling more lost then ever! with medical and education

CanadaNuse
  • By CanadaNuse · Posted November 17, 2008
  • Journal · 0 replies
  • A lot has been happening on the home front. Ash's medical team including mental health are changing her dosage of medications, times given etc. In hopes that the current combination of medications will ...

Looking for others

mommymanda
  • By mommymanda · New reply November 17, 2008
  • Discussion in HIDS · 6 replies
  • We are looking for other families dealing with HIDS. We have an almost 3 yr old son who was diagnosed at about 19 months. We have been going to the NIH since April 2007 about every 3 months. We have met ...

Its been a while since I last posted!

CanadaNuse
  • By CanadaNuse · New reply November 17, 2008
  • Journal · 2 replies
  • There has been alot going on, since our last post, and honestly I don't know where to start. We had over TEN doctor visits and still not closer to anything. But we keep on getting more clinical DX for ...

Explore Inn: Fun Science Experiments

BKuz
  • By BKuz · Posted November 17, 2008
  • Journal · 0 replies
  • Don't miss this wonderful opportunity to enjoy hands on activities and cool demonstrations with Scientist Mr. Freiland this Thursday, Nov. 20th at 7:00pm in The Art Room! You've never been to a Science ...

Explore Inn: Fun Science Experiments!

BKuz
  • By BKuz · Posted November 17, 2008
  • Discussion in General · 0 replies
  • Don't miss this wonderful opportunity to enjoy hands on activities and cool demonstrations with Scientist Mr. Freiland this Thursday, Nov. 20th at 7:00pm in The Art Room! You've never been to a Science ...

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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.