Hi Kate, How is Alex feeling today? I do hope he gets to feeling better soon. Poor little guy. I sure wish they would hurry up with this so called protocol. I ...
Jim & Sherri
mintcrik@...
Jun 2, 2003 2:51 am
405
Dear Everyone, I hope that you all are enjoying summer! I also hope that all the children are doing well, and that Miranda and Alex are feeling better.I have...
Hi Karen,and everybody. I have spoken to Dr Goldback- Mansky and Janet Jones. It seems that they had to do some word changes to the protocol and so it was...
Hi all, Good to hear from you. As usual our summer has been crazy. Not enough time for fun. Sorry to hear some of the children are doing poorly. Camille,...
Hello everyone, just like everyone else we are anxiously awaiting the go ahead from the NIH. Zachary hearing continues to worsen. The left ear no longer ...
Karen, my son Zachary wears orthotics. His fit inside his shoes. When we were up at the NIH they had suggested two different braces for each foot. This is...
Dear Michelle, Sorry to hear about the mouth sores. What works for this is a 1:1 ratio, about 1/2 tsp. of maalox liquid and !/2 tsp. of liquid Benedryl to...
Dear Jan, thanks for the information about orthotics, it was helpful. Seth has some inserts from the NIH, and I need to get some new ones, but the Podiatrist...
... From: John and Kate Barton [mailto:jkbarton@...] Sent: Saturday, July 12, 2003 2:46 PM To: 'nathan durrant' Subject: RE: NOMID Clinical Trial NIH...
It's nice to see there is a place I can go to chat with people about this syndrome. My great-daughter has NOMID. Tiffanie will be 8 next Monday. My daughter...
It's been awhile (I know) but we finally are in the process of getting my grandaughter Erika into the NIH. Last visit to the doctor my daughter was told that...
An extended hug to you friend. I know just what turmoil and anguish you all have been through......Searching for answers,pleading in prayer,and worrying not...
Juice PLUS+ Juice PLUS+ Juice PLUS+ Juice PLUS+ Juice PLUS+ Juice PLUS+Where God wants me to be Next time your morning seems to be going wrong and the children...
We do not like to open attachments, for fear of getting a virus, can you paste the text into an email? Terry ... Outgoing mail is certified Virus Free. ...
Hi All, Our son Charlie has been diagnosed with CINCA Syndrome by Prof Woo at Great Ormont St hospital. However after reading some of your stories on the web...
Dear Karen, From what you've told us, Charlie is like our Molly. Until now we thought she was unique in having the CINCA mutation yet mainly presenting skin...
Hello Karen, Glad you found the Nomid website and newsgroup. Our son Alex is 7 and has NOMID. He had the MMR jabs until he was 6 months. Shortly after, he...
Hi Karen, Welcome to our group! This is a great place to find out about the disease when no one else has any answers for you. It took us almost 3 years to get ...
Jim & Sherri
mintcrik@...
Sep 8, 2003 1:44 am
423
Hi John, When did you get the call for the NIH"? We have been waiting and no one has even called yet. Are they officially starting the drug now"? Please keep...
Jim & Sherri
mintcrik@...
Sep 8, 2003 1:47 am
424
Dear Karen, Our son Zachary, who is 19 years old was diagnosed with CINCA when he was 9 years. He had all the classic symptoms that are described in this ...
Dear John, Kate and Alex, I hope Alex begins to feel better with the Anakinra drug. It sounds very promising. Zachary has a great support group and I will...
Hello, I just want to wish you all that are on your way to the NIH, or are already there, the best of luck, and I am hoping and praying that this medicine is...
Hi Everyone, I just wanted to post a Thankyou to everyone who has emailed me regarding 'Our Little Boy' Charlie, (as its taking me ages to reply to everyone)....
Hello to you all. Well, let me first say that the protocol will start as soon as they have a number, but it has all been approved by the FDA and as soon as ...
Hi Kate, That is great news about Alex, I hope all is going well since you wrote this mail. can you confirm the name of the drug Alex is trying, also if it...
WILL SOMEBODY PLEASE ANSWER MY EMAILS?????? I have sent off at least 3 and am getting no reply. Maybe they have gotten lost or somthing somewhere between me...
Jacie, Sorry to hear about your grandaughter.I hope that you can get her up to the NIH soon. I think that a few of the children have shunts and It would be ...
Hi Karen. thanks for the words. The new medication works on the IL-1 pathway which is responsibe for inflamation and it works very quickly. it is a daily ...
THANKYOU SO MUCH! Jacie, Sorry to hear about your grandaughter.I hope that you can get her up to the NIH soon. I think that a few of the children have shunts...
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