Re: [nomidsyndrome] Re: Fwd: FW: Interview With God
We are hoping to be able to start Anakinra. Do you know if it is available for a child 8 months old? The study says for children 2 and older. I have been reading the reports of the great results with this drug, it sounds very promising.
Hello again, I thought if anyone needed a pick me up, this would do it. It's beautiful. Jan and Zach Note: forwarded message attached. Note: forwarded...
Hello, I am new to this group. We are waiting on blood test results from NIH for our 8 month old son. We believe he will be diagnosed with NOMID/CINCA. He...
Dear Kathe, My son Zach along with Alice, the Leifflers daughter are the oldest on the protocol at the NIH. The good news is the drug has already been...
Glad you found our group.Have you managed to read any of the other children's stories. It's not a disease that fits into one box as each child has different...
Thank you all for your replies and information. What does it cost to go to NIH? Do you fly or drive there? We live in Omaha, Nebraska. I see that they...
Hello everyone, Did all of you go through genetic testing? And did you all have positive genetic mutation results? I have read that only 50% of those with...
Kathe, Have you read the stories on the CINCA/NOMID website? My son Zachary does not have the specific mutated gene that Dr. Kastner discovered. The way I...
Hello Jan, Thank you for your reply. I have read the web site, I just have no brain right now with all the stress I am feeling. :) I looked through our...
What a blessing that you can get a diagnosis for your son at such a young age. There is help and hope for him!! Our daughter, Alice, is almost 20 and she had...
We live in Nebraska. Isaac is the youngest of our four boys. We do have another child with different disabilities, so we have learned to navigate and ...
We are hoping to be able to start Anakinra. Do you know if it is available for a child 8 months old? The study says for children 2 and older. I have been...
Hello, My son, Isaac, is 8 months old. He also has delays. He just started rolling over after doing it earlier and quitting for several months and does not...
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