Dear Louise,

I was able to see the photo in the files, and would love to read this
article! If you ever are able to upload it, or even cut and paste the
text into an e-mail it would be great. Wow, front page news!

You all look great, and I am so glad that things are going well for
your son. The anakinra is an amazing drug. Seth is doing so much
better too!

Seth and I just got back from the NIH late last night. IT was so
great to see the Putvins, and also another NOMID family that we had
met right at the start of the Anakinra treatment. It is so amazing to
see how much better they are doing now, after only a few months!

Sherri, I will call you once I get things taken care of back here.
There is so much that piles up in just a few days away!

Jan,

Yes, Dr. G is out of town right now, but she should be able to be
reached, and I am not sure whay Nikki is not answering back, and I
hope she has by now. Nikki was out of town until this Tuesday, and
really messed up on all our shcedules, in such a big way, it angers me
to even think of it now!

Long story, but I vow to get things taken care of so this NEVER
happens again, since one of the worst of the many errors she made to
all the NOMID kids schedules this week included not scheduling some of
their sedated MRI/ LP's! The worst part of it was for the past 2
months , whenever I have called and asked about Seth's schedule and if
this was ordered, she said that this was scheduled for a Weds. so I am
not sure why it wasn't at all! Rhonda did get it scheduled, at the
last minute for him, since she was having to deal with the schedule
during Nikki's vacation, and luckily she was able to get a sedated MRi
slot. At first, we thought that it would not be possible, and I was
so upset!

So, anyone going in the next few weeks, please beg her to e-mail, fax
or mail your schedule ASAP and look for errors, and get them taken
care of immediately, so your children will not have to suffer. I hope
that she will not let this happen anymore, but the buzz from EVERY
department we went to this time had given me the impression that this
is the norm of late with her scheduling, so beware!

Our schedule was totally messed up in Feb. but at least the sedated
MRI and LP was ordered, so it was not as hard to fix. However, all
the last minute changes made life way more stressful, and so many
things were wrong that I kept discovering some more, even once we
arrived at the NIh, and it made me very concerned.

I would recommend calling the page operator at the NIH to have Dr. G
paged, wherever she is (she left on vacation Thursday) because I was
under the understanding that she would be able to be reached, for some
other things related to the study.

The page operator is: 301-496-1211

You can also have Nikki paged! I would also consider having Dr. G's
team of doctors paged if you get nowhere with Nikki. I really think
Dr. Louie is great. Another option is to call Rhonda Foxworth, to see
if she knows how to reach Dr. G. Her number is 301-402-8679.

Have you tried reaching Dr. Rubin directly? His number is
301-435-8034 and the eye clinic number is 301-496-7295 ext. 0 from off
his business card. I also have his e-mail, but could send you that
priovately.

I am sorry to hear that Zach is having trouble with his eyes, and his
concerns for his desire to have a relationship. That sounds so
heartbreaking to hear, and I think that he is a wonderful young man.
My heart goes out to you all, and I hope that you get the help you
need for him.

Generally, I have only good to say about the NIH, and all the doctors
are great, and most all the nurses. I am just wishing they had hired
someone like Janet, because things are really not the same since she
retired, and it is not fair to the patients, the families, the other
staff, and departments in the NIH when Nikki does not take the effort
to do things right. It also offends me greatly because I am a Nurse,
and have even done a few years of Pediatric research nursing, and how
she is doing things is an embarrassment to the profession.

I am glad to be home, and I will be on her tail for the future! I
would not be even writing this to you all, except that I do not want
others to suffer.

Karen

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