Shannon, We are at the NIH as we speak. You're visit to the NIH will be fine. Dr. Goldbach-Mansky and Nicky Plass (nurse) will be your main contacts here. You...
Shannon, I will be there at that time with my son Kieran. We too are staying at the Inn. I would love to meet you and talk to you. I have met several...
I spoke to Nikki and she said for the first appointment they make the reservations at the Inn...Follow ups are up to us. I am a nervous wreck! We are just...
Take a deep breath. It is all going to be ok. Forgive me for not knowing...how old is Ashleigh and what are her main problems? It is probably a good thing...
Dear All, Seth is still suffering from bad headaches daily, even on the increased Anakinra dose. He has been taking Motrin to help the pain, but nothing seems...
Karen, Try switching to a new package of Anakinra. Look at the lot numbers. It might not be that simple, but Kieran had a really bad month a while back and...
hello I'm so sorry to here about seth .I know how he feels with dealing with these headaches.beside taking the diamox i take xanaflex and vapamil to all...
hello I'm so sorry to here about seth .I know how he feels with dealing with these headaches.beside taking the diamox i take xanaflex and vapamil to all...
Dear Michelle, Thanks for the tip, we actually were on the same lot over the past 5 weeks, but just picked up a new batch today (and new lot) so I am going to...
Dear Karen, Zach has had issies all his life with headaches. First as an infant he had ventricle dialation; where he had a shunt placed to relieve the...
Hi everyone, I just got back from running around like a chicken trying to find someone to check Michael out and I am ready to explode. Michael has had a...
Dear Karen A., I am so sorry that you are dealing with such a nightmare up there in Canada. Seth had plastic uveitis/iritis first in 2004, and it started as a...
Thanks Karen for your letter, I am so tired right now and spontaneously combusting! I hope you did not think I was refering to anyone here when I made the...
Hi Everyone, Ashleigh has had some head shaking, side to side for about a month now...also her right eye spasms side to side. We meet with the neurologist on...
Hi Shannon, Alex had this same thing as a baby but nothing came of it, we had a few EEG's and it was blown off. By the way welcome to the group, if you would...
Michele, Thank you so much for getting back. Ashleigh will be 18 months old tomorrow. Her symptoms started at 5 weeks old. A rash that is over mostly her...
Hi everyone, In the never ending saga of Michael's eye issues.... I went to the pediatrician this am only to be brushed off by him too, still no real look at...
They are possibly thinking Ashleigh nystagmus. She had an EEG yesterday and that ruled out seizure activity. She goes tomorrow for her regular appointment...
Today we saw Dr. Valencia, the neurologist at St. Chris's. He believes the reason for Ashleighs Nystagmus may possibly be neuroblastoma...He sent me home with...
Shannon, I am so sorry and so sad that you are dealing with this. Did they do an MRI? When will you know for sure? I don't know your faith, but I strongly...
Shannon, I can't imagine what your family is going through right now, I am so sorry that you are facing so much. It challenges your faith when things like...
I am so sorry to hear of little Ashleigh's current diagnosis. My son, Zachary this past summer developed a nystagmus. They did an MRI here in St,Louis and...
I took the urine sample up today. I know he wants to get the results before the MRI b/c she just had one a few months ago on her head. I guess to limit...
Karen, It was great talking to you! I still got the email wrong! LOL. Email me at FrankandShannon23@..., that way I will have it and I will send the...
Michelle and Shannon, Isaac and I will be there the 9th - 12th. I just received my flight itinerary and we should be checking in around noon on Tuesday. It...
Just want to mention... if you get the Children's Inn Magazine... Seth Durrant is featured with Karen... I was thrilled to put a face to Karen and Seth......
Happy New Year to All!! I pray that 2007 will be an exceptionally great year for all of our families, especially for all of our angels to whom we care for. ...
Happy New Year from us too Louise and Tom in Australia ... From: Terry & Camille Lieffers To: NOMID EGROUP Sent: Sunday, December 31, 2006 7:11 AM Subject:...
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