Hello All and to you especially Kathe,
We just got back from the NIH. Kieran is doing great! We had a
HORRIBLE time there. He was sedated the first day we arrived for
his MRI and his LP. The good news is that he has NO elevation of
his pressure, no WBC's in his spinal fluid and his MRI was normal.
The bad news is that those were the only 2 tests they got to do all
week because he did not do well with the medication they used to
sedate him. He got horrible stomach pains with lots of gas and
bloating and ended up extremely constipated. He layed in bed in the
day hospital for 3 days and ended up getting admitted when he
started throwing up. Poor kid. Around day 4 it all started moving
and life got much better. Those day hospital nurses were GREAT and
the peds fellow Dr. Lang was great too. We will take him back in a
month to get the rest of his tests done. Kathe, I will give you the
date when we get it. Nichole was on vacation last week so I will
email her this week. Needless to say, we won't be giving him that
medication again. It happened last time as well but we thought it
was a fluke.

Karen, the NOMID Alliance looks great. I really like the t-shirt
idea. I would be happy to try to sell some if you get them made.
Have you looked at pricing to see what we might need up front? You
have done so much work.

I met Salvador and his mother while we were there. They don't speak
English but we sort of talked through broken spanglish. He has
hearing problems but he looks really good.

Hope everyone is doing ok. Camille are you out there? How is Alice?
Kate, how is Alex? Did he have to have a new shunt placed? By the
way, we had increased Kieran's anakinra because he was having an
exacerbation about 4 months ago. He has grown so much his dosage is
down now and he is maintaining. That's good news for us all. I
also spoke to another doctor who works with proteins alot and said
they are very fragile. He said any temperature changes in the
Anankinra has the potential of decreasing its efficacy. He also
said he knows people that have been taking anakinra for a very long
time and it is still working for them. I thought that was good news
for us!

Best to all,
Michele



--- In nomidsyndrome@yahoogroups.com, kathebarch@... wrote:
>
> Hello all,
> We are back from NIH again. We are going every four weeks now for
I do not know how long. I am meeting some wonderful families each
time I go. I am not so good at keeping in touch but find that
everyone of you are warm and caring. Michelle, I am saying hi as I
said I would. Maybe I will be there when your husband and Keiren
are there. I will let you know the dates when I have them. I
really enjoyed talking with you. You are very clever in your
approach to all this. I would love to be able to meet up with you
again. I talked quite a bit with Gabby's Mom and sister(I am so bad
with names). They are going through a lot right now. Isaac really
took to both Keiren and Gabby.
> We are still at the cautious wait and see with Isaac. They are
not able to taper the steroids because he has lost weight and we
must find out why. He is only 2 years old and is so tiny anyway, he
cannot afford to lose weight. He also is showing some liver
involvement with the blood work, so we will be doing further testing
when we go back in four weeks. I am so humbled when I go there and
see so many others with so much more to go through, but this is my
child and my heart breaks for him. He cries so hard that they
cannot get tape to stick to him to hold his IV in from all the
sweat. The nurses are so great and care so much. I know they were
upset to have to poke him again because his IV slipped right out.
> I feel so fortunate to be able to take my son there. We were
feeling so desparate for too long and now feel hope. I cannot
imagine what it was like for the families before.
> Hoping you are all having a great season.
> Kathe
>
>
_____________________________________________________________________
___
> Check out AOL.com today. Breaking news, video search, pictures,
email and IM. All on demand. Always Free.
>