Hi Karen,
At least I will have someone to talk to!! We are bringing the whole family,
that way my husband will be able to take our 13 and 14 yr. old to the
Smithsonian, the White house, I have a whole list of things for them to do.
We will take turns taking them. So we are all checked into the Childrens
Inn, but Jim and I will take turns staying with Miranda.
When we were there last January, it was nothing but test after test and
there was no spare time to do anything. I know a little more of what to
expect this time, I hope!
I am so glad that Seth is doing so well. I am very anxious for Miranda to
start. I worry because she is so little that I am going to run out of places
to give her shots!
Keep me posted as to how things are. We will arrive at the Childrens Inn on
the 27th. It will be really nice to put a face with the email!!
Take care.
Sherri
----- Original Message -----
From: "sfokaren2003" <sfokaren2003@...>
To: <nomidsyndrome@yahoogroups.com>
Sent: Sunday, February 22, 2004 9:13 AM
Subject: [nomidsyndrome] Re: Going east


> Dear Sherri,
>
> Guess what Sherri? Seth will be at the NIH from March 28- April
> 8th! He will be there for the big visit, with the flare test (withdrawl
> of the medicine). I am not exactly looking forward to that part , or
> the LP, etc. but it is all worth it. We will have to get together there.
> It will be so nice to meet in person! I warn you, that first visit is
> very busy and intense, but the second is much better (and you
> get to stay at the Children's Inn the second visit).
>
> It has been a lot of fun meeting other NOMID families, and Hello
> to you all that we have met! I am not sure if we are supposed to
> mention names, since the whole HIPPA and patient privacy stuff
> due to the research. Does anyone know about this? It has been
> an amazing and inspiring experience to meet you all, and I am
> truly in awe with what wonderful and talented children we have
> met that have NOMID. Many have suffered more than Seth, but it
> is amazing how there are such similarities in the stories of our
> children, and little details that we have discovered, even from the
> infancy period.
>
> I think the weirdedst thing after talking with other families, is
> many babies have had excessive, toxic looking bowel
> movements, and used over 140 diapers or more a week due to
> this. Seth, and a few others were this way, but no one had a
> diagnosis back then, and nothing has been written in the
> literature on this. Everyone told us, "it is because they babies
> are breastfed" but this is way beyond normal breast fed baby
> excrement! Perhaps this information, although a disgusting
> topic, will be of use to someone for diagnosis of these children.
>
> I am also amazed how many have had pericardial effusions,
> including the mother and daughter that have written in. If that
> had been in the literature, I think Seth would have been
> diagnosed closer to 13 months, when he had a pericardial
> effusion. There is so much to learn, and families getting
> together really brings out these details.
>
> I wish eveyone the best of luck, and thanks to all we have visited
> with through the NIH! Considering the rarity of the syndrome, the
> fact that we have met 5 other families with NOMID since last April
> is an impressive number!
>
> We have been so impressed with this medicine. Seth's labs
> were in the NORMAL range at the second visit, which has never
> happenned, including the C-reactive protein, and ESR! His
> anemia was improved, which is a first ever as well. He does not
> have to take as much iron now, shich has been a nice change.
> He was getting a lot of stomach irritation and problems with high
> dose of iron, which were still not helping the anemia, until the
> Anakinra started. Seth has also had a reduction in his optic disc
> edema, and improved hearing tests, due to the reduction in
> pressure and inflammation in his ears. Of course, the rash was
> gone ther first day after the medicine started, but the best part is
> the reduced pain, and increased strength and stamina. He was
> using the stroller to get around everywhere before the Anakinra,
> since he was in pain and weak, but withing a few days of the
> medicine, he was walking more than riding the stroller, and
> much more active!
>
> I am so thankful that this medicine is available for these patients
> with NOMID, and hope all the people with this syndrome in the
> world can get it. Does anyone know what the cost is per dose? I
> wonder what will be the next phase with this study, once this year
> is up with the NIH. I hear that they may have other studies, and
> we will probably return to the NIH over many years for various
> things, but I am wondering about this. I think that my insuraince
> would cover it, if it is deemed medically necessary (I think that is
> already proven) but you know how insurance is! Any insight is
> welcomed!
>
> Best wishes to all,
>
> Karen Durrant
>
>
>
>
>
> To Post a message, send it to: nomidsyndrome@eGroups.com
>
> To Unsubscribe, send a blank message to:
nomidsyndrome-unsubscribe@eGroups.com
> Yahoo! Groups Links
>
>
>
>
>