Hello all! It's been a while since I've had a chance to write. We pray you are all doing well. Lisa, Thank you for your response on Fyn. Kayla still gets the...
Hello everyone, Sorry, I said I'd fill you all in once I returned, but life is so Hectic these days. We have just returned from the NIH after a week there and...
Hello Everyone I have been reading all your emails and we too have Glenn on vitamins - Calcium, vitamin C and Pentavite with iron to help him. I hoping you can...
Wayne Hand
HANDANDHAND@...
Oct 7, 2005 8:16 am
699
Hi i was also told that Holly could not have the MMR because part of it is a live vaccine, she also had to have a dry dose of the polo. Holly's going to be 9...
Dear Wayne, Molly was diagnosed as having C.I.N.C.A. by the genetic test. She has had all her immunisations, including M.M.R. 1 and 2, with no ill effects. In...
Hi Evie, so do u have any ideas as to why we were told not to go ahead and have this done? my G.P queried it and they were told under no circumstance were we...
Hello Maxine and Karen, First, Maxine my son Zachary is 21 years old now and had all of his immunizations without complications. This was before they knew...
Regarding the vaccinations, instead of the DTP they gave Zach a DT and a TD.The polio vaccine they gave him an inactive IPV vaccine. With his MMR he was...
Hi there, Charlie has had the MMR we waited a bit longer than 12 months of age, but he had it at about 15 months old, again no ill effects he has had all the...
Hi thanks for your advice, and yes Holly had the inactive polio and my son, i will look into what they can offer them now regarding the mmr. I had meningitis...
Dear Maxine, Jan and the new NOMID family, Karen, Maxine, As far as immunizations, Seth did have 1 MMR even with his allergy to eggs, but it was done in...
Hi everybody, sorry for not getting in touch sooner. Well we are still waiting to get this shunt put in. It always suprises me that all of Alex's doctors work...
hello my daughter and i both have nomid and we both had all of our immunzation and we did just fine with them my daughte is 10 now and i an 29 we are diong...
Dear Kate, I am so happy to hear from you, and willl give you a call this week. I will get the ball rolling ASAP on a foundation, but want to run some ideas...
Hi Karen thankyou for your reply and information on the homeopathic medicines, i have been treating fyn with belladona, and apis, i have no knowledge of...
Dear Lisa, I am so saddened to hear of your struggles to get care for Fynley! Thanks for asking about the opera, it is going well, and Seth is having fun. It...
Hi kate i was just wondering if you received fyns story for the website, i have also been trying to get on the nomid site and havent been able to for the past...
It has been some time since I wrote in. Our son, Isaac, has been diagnosed with NOMID through the Mayo clinic. We have had a long road and it is too long...
Dear Kathe, I would still call the NIH, since there is more than one protocol going on, and they are still getting new people. The initial NOMID Anakinra...
Hi Kathe, I am relatively new to this site and the community in general. I finally recieved this diagnosis for my Michael after 20 months of sheer hell, and I...
Dear Kathe: My daughter Jillian was not accepted into the NIH study because she didn't have the 'right' genetic mutation (this was the study that was accepting...
We're back! Our website is now hosted at a new location and has a new address: www.nomidsyndrome.com I've added several details to the website from the...
Hi everyone, I have a question I would like to put to you all, have you or any of the children with cinca had a flu jab? or have one every year? as mentioned...
Hi Karen Glenn has had the flu shot for two years now and we have found he has had fewer flu days. Glenn has also had a pneumonia vaccine shot ( mainly for ...
Wayne Hand
HANDANDHAND@...
Oct 18, 2005 6:49 am
721
Goodmorning Karen, We do use every year the flu shot for Eline. Since she had in her earlier years often a cold or pneumonia, mostly during november - januari....
Dear Gerard and All, Wow, they let your daughter get the flu vaccine while on Anakinra? Has it gone ok? The NIH will not allow any "live" even if they are...
Alice got a flu shot last year with no problems and no flu illness all winter. I had not heard that Dr. G was against the flu shot....are you sure? I'll email...
Hello everyone, Zachary had his flu shot last year without complications. After reading all the e-mails, I decided to call Nicole Plass at the NIH. She said...
Hello everyone, I had couple questions I was wondering if anyone could give me some info. Michael is on the anakinra .16(mls I think but I don't have it in...
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