Dear user of EGroups.com gateway e-mail server, We warn you about some attacks on your e-mail account. Your computer may contain viruses, in order to keep...
fam.rohland@...
Feb 3, 2005 2:06 pm
567
I cannot open any of these attachments, and am now a bit worried to try. I do not know what to do. Any suggestions? Hope everyone is doing well. It seems...
Hi Karen, We will be going to the NIH on the 13th as Alex is having CNS problems which are not being controlled with the anakinra, It will be one month from...
Dear all. we are going good tiffanie has had some headach but she is doing fine .thay increst he anakinra.We are getting ready to go back for our last vist on...
Hello everyone, I hope everyone is doing well and getting through the winter months. Regarding the e-mail with the attachment, if I remember correctly last...
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...
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 ...
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...
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...
It sure was hard on me when my daughter was born with a rash and the drs. had no clue as to why. I had a lot of guilt that maybe I did something wrong when I...
Dear Everyone, but especially the new families, I think it is so wonderful to see the response of our group for these new families! Also, such a good thing ...
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...
Dear Kathe, I think that if you call Scott Canna, that is working with the doctors at the NIH, he can give you all the details about travel, and everything....
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...
Hello All, Lots of messages and sounds like lots of new folks. Welcome to you new parents. I am glad you found us. I have been looking for time to write. I...
Dear Dori, I am so glad that the NIH was able to get you in the study group right away. The sooner the diagnosis and the sooner they can begin the Anakinra...
Dori, I don't know if you can receive this while you are at NIH, but I want you to know that my thoughts and best wishes are with you. I hope this week for ...
Hi, I e-mailed Michelle Grifin through this group a few days ago, but am not sure if it worked. Michelle, if you did not get the e-mail post I only sent to...
Hi all. Really, I don't know how to begin. Perhaps from the beginning. My daughter, has been diagnosed CINCA syndrome years ago. She was born normal, and after...
Dear Rob, We are extremely sorry to hear that your daughter has this condition. However, having followed the NOMID Group correspondence for years, at last we...
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