Karen,
I think I remember Janet telling us, the medicine is about 10-15 thousand
for a year. I'm guessing maybe $41 per shot??
Not sure how the insurance will work.
----- 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
>
>
>
>
>
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