Dear Michelle and everyone,

Congratulations to Zach!, Hello as well to the Sherri,
and happy belated Birthday! We missed seeing you by a
few days. I hope Miranda did well. Sherri, did you
get to meet the Walker family?

Also, good luck to Kieran. Michelle, you will have a
very busy week, but it is all worth it. Seth is doing
very well right now, and has improved greatly in every
way. More than we ever could imagine. Of course, he
is a milder case than many, but was starting to
develop some more significant problems, which were
halted and partially reversed with the medication.

We feel so blessed that Seth has been able to get this
medication at a young age, to hopefully prevent the
progression of damage to his body. He is growing, and
has so much more energy and strength, compared to his
lethargic and very weak self prior to the medication.
He was having to use a stroller to get around on most
days, and now runs and walks and can jump and even is
learning to skip! His anemia is gone, and most of his
labs are normal, or closer to it, which was unheard of
in the past!

Seth tolerates the medication ok on some days, but if
he is tired or ina bad mood, or we switch to a new
site, he can fight it. I have a reward system with
little linking plastic chains, and he gets a links
depending on his level of cooperation. 5 is the top
mark! We use these for other things, like doing bonus
chores, etc, and when we have used up all the chains
in the bag, then we count them up, and each is worth a
penny. It works in our house, but Kieran is older, so
he may requre more (or maybe not much) insentive.

My nephew is diabetic, and I have told Seth about how
many finger sticks for blood tests, and injections of
insulin Dylan takes every day, and Seth feels lucky he
has to do only 1. Dylan got Diabetes around age 6,
and has never had his parents do the injections, he
has always done himself! His parents watch him draw
up the medication, but he does it all. They told me
that they have actually never given him a shot! I
think this is exceptional behavior for his age, but he
is now 10, and is a real pro. I don't think my older
son, now 7, would be so brave!

Have fun in DC, and try to get out on pass as much as
you can before the Anakinra starts, since you will be
trapped after it starts. Also, keep Kieran lying down
and hydrated well after the LP, if possible. Seth has
had a rough time with spinal headaches and had a
spinal fluid leak the first time we went on the
protocol. I know that has been a problem with some
other children too.

Best wishes to all and have a great 4th of July! We
will be gone on a month-long trip to visit family we
have not seen in a long time. If you don't hear from
me, that is why! We would not be able to consider the
trip if we did not have Seth on this medication! The
doctors at the NIH were very helpful last fall when we
told them our hopes to take a longer trip, and they
have been so helpful, and also worked Seth's schedule
so we could make our plans. I don't know if this is
something others have considered, but it can be done.
I need to now finish packing, since we leave tomorrow!

Karen Durrant



--- nomidsyndrome@yahoogroups.com wrote:
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>
>
> There are 2 messages in this issue.
>
> Topics in this digest:
>
> 1. NIH Visit and update
> From: "mmkcgriffin"
> <mmkcgriffin@...>
> 2. Re: Zach's Graduation
> From: "mmkcgriffin"
> <mmkcgriffin@...>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 1
> Date: Tue, 29 Jun 2004 02:28:20 -0000
> From: "mmkcgriffin" <mmkcgriffin@...>
> Subject: NIH Visit and update
>
> Hello Everyone,
> My email has been down for a month. I have wanted
> to tell you that
> Kieran and I leave for the NIH July 4th. We will be
> there all
> week. He has had labs the last 3 weeks and is doing
> so good. I am
> so proud of him. Is anyone else going to be there?
> Camille, so good
> to hear Alice is doing so well. I can't believe she
> medicates
> herself. Kieran is so impressed. He is gearing up.
> His strength,
> when it matters most, amazes me. Has anyone been to
> the NIH
> recently? Anyone who has been have any advice?
> This will be our
> second visit, 1st in the trial. I will keep a diary
> and try to
> update you all when we return.
> Hope all are well.
> Michele
>
>
>
>
________________________________________________________________________
>
________________________________________________________________________
>
> Message: 2
> Date: Tue, 29 Jun 2004 02:30:38 -0000
> From: "mmkcgriffin" <mmkcgriffin@...>
> Subject: Re: Zach's Graduation
>
> Yea Zach!!!!! Congratulations Jan and Zach. Jan
> are you still at
> Cardinal Glennon? Is Dr.Moore Zach's Associate
> Investigator?
>
> --- In nomidsyndrome@yahoogroups.com, jand71054@y...
> wrote:
> > Well, he graduated last evening. I thought you
> would like to see
> him in his cap and gown. He did great and walked all
> the way. Jan
>
>
>
>
________________________________________________________________________
>
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>
>
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