Having problems with message search?
Hello Karen and all the NOMID families,
Does anyone know if Dr. G. is out of town this week? I know she was going to Yellowstone soon, a well deserved vacation I might add.. I have tried to call her and Nicole today regarding Zachary's eyes. I just noticed last week before sending him off to camp that his left eye; not eye lid was twitching. I called her last week and she said if the symptoms do not clear when he gets back to see a Neuro-opthalmologist. He was seen yesterday and I noticed in the reception room that both eyes were involved now. The Doctor here feels it's part of the disease progression and to increases meds. to get everything under control. He called it Disconjugate micropendular vertical nystagmus-probable cerebellar vermis dysfunction. I actually called the eye clinic a few minutes ago, to see if I could leave a message for Dr.
Rubin. Just waiting now for someone to return my calls. I even paged Dr. G. and called her cell phone. Zach has had a rough year emotionally, had to put his dog of 17 years to sleep, his best and really only friend moved to FL., and is happy to be an uncle, but at the same time really wants a relationship and would like to have a family of his own someday. Hard at times to find answers to comfort him and continue to encourage him. If anyone has any suggestions on how I can contact someone at the NIH please respond back or call me at 636-938-4393.
Take Care all of you,
Jan DaPrato- Zach Eise's mom.
speech58 <louise@...> wrote:
Hi Karen
I'm still having email problems.
The links both appear to have been archived.
I think I've added a photo of the front page to the files section.
We do have a PDF of the article but I can't seem to upload that.
We do have the TV story recorded on the vcr!
Louise
Tom in Australia's mum
--- In nomidsyndrome@yahoogroups. , "sfokaren2003"com
<sfokaren2003@...> wrote:
>
> Hello to all,
>
> This is a long shot, but if any of you will be near the NIH, or
live
> close enough to visit the NIH tomorrow (Friday July 28 around noon)
> call Dr. G! She can explain it to you, but there is someone very
> important (no idea at all who or what this is about) wanting to
meet a
> NOMID patient tomorrow, and there are non NOMID patients at the NIH
> this week. Too bad there was not much notice, or this person
doesn't
> have a more flexible schedule, since so often there are some of us
out
> there!
>
> I think that someone with NOMID lives in Maryland, but I am not
sure
> if they go to the NIH.
>
> Had I known sooner, I would have tried to make plans to move up our
> trip, since this could be a very good thing for increasing
awareness
> about NOMID, and these things do not happen very often, or ever!
>
> Again, no idea who this is, or how important the VIP is, or how
much
> it will be of benefit for increasing awareness for NOMID, but I am
> just hoping that someone may be able to make it there!
>
> By the way, the NOMID Alliance is in the final top pick for the
> LegalZoom.com non-Profit of the Year Award! I will let you know if
we
> win, or not next week, when they announce the winners. The prize
is
> $5000 grant for the non-profit. I never thought that we would be
in
> the running! Keep your fingers crossed! The money would go towards
> printing a brochure about NOMID, FCAS and MWS to be sent to
specific
> doctors that take care of kids that have these syndromes and may
not
> even know it!(Neonatologists, Allergists, Rheumatologists,
> Dermatologists, etc).
>
> What an exciting week for NOMID, and awareness for these syndromes,
> from Australia to the USA. Louise, please send me the links for
the TV
> and newspaper bits on your son! I have been trying to search for
the
> m online, to no avail. I wish I knew who the VIP was that wanted to
> meet a NOMID patient. If they had even called me yesterday, I
would
> have been able to make it, but now the only way would be a red-eye
> flight, and insane packing!
>
> Well, I hope someone shows up, or they reschedule a meeting another
> time! Who wants to meet us??? Why??? Are they a politician, a
> celebrity or a medical person???
>
> If nayone figures this out, please post!
>
> Karen
>
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