Please remove me from your mailing list.
Lieven J. Van Riet

-----Original Message-----
From: sfokaren2003 [mailto:sfokaren2003@...]
Sent: Monday, April 12, 2004 6:55 PM
To: nomidsyndrome@yahoogroups.com
Subject: [nomidsyndrome] Re: We are back

Dear Sherri, Camille, Jacie and everyone,

Sorry that I have not been able to write until today, but we were very busy
at the NIH, then back into a ton of stuff once we got home! I hope that
every one had a wonderful Easter (or
Passover) too! It was so great to meet Miranda and her older brother and
sister, and her great parents! You all were so nice to Seth and I, and we
really enjoyed meeting you in person! You would think that we all would
have had tons of time to gab and all, but some days, we were lucky to see
each other in passing, since the NIH schedules were crazy.

As far as Seth and the withdrawl went, I am so glad we NEVER have to do that
ever again! He had very mild rash and a headache within hours of not
receiving the medicine on the first day, then was up for 4-5 hours that
night with vomiting and nausea, and screaming about his neck, back and head
hurting, and woke up with glassy, red eyes. They count the flare days as
from 9 a.m. the first day you stop medicines to the next morning at 9 a.m.
as one day, so Seth flared for them on day one. He had a few more rough
nights, and was lethargic and wiped out and suffering like he did before the
Anakinra, then on Sunday, (the morning of day 4) he woke up covered in
rash, (in fact his feet were almost completely full of rash) and having a
horrible flare, dehydrated, screaming in pain and suffering, and he had met
all the criteria so he got to go back on the Anakinra.

However, first they had to get labs, and he had no IV since it infiltrated
and got yucky on Friday. Well, there were multiple things that happened to
make a "routine" lab draw turn into a nightmare, and he was also flaring so
strong that he kept clotting almost instantly, so many labs had to be
redrawn. I lost track of how many pokes he had that morning, but it was
possibly at
least 8 or more times, including the feet, etc. I started to cry
during the last few attempts, once Seth started to scream " Stop, I love my
rash, I like to be sick , I like my rash......" He didn't understand that
we were not giving the medicine (yet) but still
getting labs! I was afraid he would have post traumatic stress
and nighmares, but so far, he is ok. However, the next NIH trip with labs
may be a real spectacle!

Eventually, the labs were all collected and then we finally got to start the
Anakinra, hours later! Yet again, the unthinkable occurred, and as I was
giving the Anakinra, the plunger inside the syringe broke, and so he only
got a partial dose, and I had to redraw the rest, and poke him again! I
have never had this happen in all my life giving shots as a nurse, or with
Seth, and of all days to have this happen, I was numb with shock and
sadness. Everyone felt horribly for Seth, and I felt the worst, so they
allowed him to go out on pass that afternoon, once the medicine kicked in
(which worked within a few hours, and he noticed too).

Of not to future sufferers of the withdrawl: BEFORE anyone draws the flare
bloods, insist that they double check with the doctors about if they have
all the right vials, and if they are doing just 5 day bloods alone, or the 5
AND the 7 day blood at the same time (This is what they do for cases like
Seth, that had met the flare criteria prior to the 5 day mark). I had asked
the nurse casually prior to the FIRST poke, "Is that all you need?" and she
said yes, (I found out later that she was not familiar with the protocol),
and drew only the 5 days bloods. Then she came back 10 minutes later for
the rest, and for a new ESR since the first one had clotted. Then of
course, we were on the downward spiral into venipuncture prugatory for the
next few hours!

I wanted to kick my self for thinking that they had it all together! I was
nice, and never got mad, but was so sad for Seth, and knew that we really
needed these labs, especially the ESR, and the nurses I think the NIH is
very lucky this happened to us and not someone else, I have had the
experience of being a nurse and having to be a part of the rare but
difficult bloods draws, etc. and knew that these things can happen, or else
I would have probably been ready to get very upset!

I hope that no other child has to endure this like Seth, and I write this
only to warn you, to be vigilant and make sure before the pokes start that
everyone is on the same page. Dr. Golbach- Mansky was so sad to see what
had happenned, since she was not present at the initial blood draw, that the
nurse did not draw the right amounts and vials for to complete the flare
bloods for both days. I wished I had known how it all was supposed to work,
because I would have insisted on a few things, or had them wait until Dr.
Golbach-Mansky was present or went over it all.

They let us out on pass after Seth was feeling better after finally getting
his Anakinra, and done with labs. This really made the day much better, and
I hope, has helped to erase the trauma from Seth's mind a bit! We did get
to see the gorgeous cherry blossoms in DC, and Seth slept in the stroller
for 2 hours while I walked all over DC, to let off some stress and emotions!
I walked down to the river, over looking the Jefferson memorial, then behind
the Washington monument, past the Lincoln and construction of the new WW II
memorial, and then up to see the White House, and over to the Spy museum! I
love to walk, and really needed it that day, and since Seth was napping, I
just kept moving! I wish I had the time to do that every day. We took the
metro back to the NIH, and then I had to figure out how to get back to
clinic 10 on foot, but I eventually found my way and got in through the
garage!

Seth had been over to the Children's Inn for 1 hour before he went off the
Anakinra, but he was still having a lot of pain from his LP the day prior,
so we had to make it short. He did a lot better this time, since he was on
the Anakinra, and not flaring like before, and we also cancelled his
appointments the afternoon of his LP/MRI/biopsy and anesthesia, and kept
him down in bed, and on IV fluids the whole day, and a lot of bed rest the
next day too. He had 2 1/2 days of spinal headaches, and some weird sciatic
nerve pains down his buttocks, back and legs, but nothing like in January!

We finally went home last Tuesday. They kept Seth there for 3 doses of the
medicine (Sun, Mom and then Tuesday ). He was so tired after all his flare
days, and lack of sleep, and all, that he really needed to rest on Monday
before we flew home across the
country. He slept a lot on the plane, and was still very fatigured
for the past few days, even with the Anakinra, and at the maximum dose (2
mg/kg) The withdrawl phase is really taxing on the children. I was
surprised that Seth got really strong flare symptoms fast, but it took 4
days to really get a ton of rash, like how he used to look before the
medicine. I thought it would be the reverse. I supposed it is good for us
to now know what life with out the drug would be like, and how the symptoms
would come on, but we hope he never has to be off it ever again!

I am so happy to hear that Alice is doing so well with the Anakinra, and I
sure hope it does miracles for MIranda and the others. Camille, I have heard
that litle Alexandra is doing really well on the medicine, and they have
even gotten her to stand on her legs! I sure hope it works as well for
Miranda. She is such a
beautiful little ray of sunshine! Truly so sweet. I was also so
impressed with her older brother and sister, but I have forgoten their
names, so sorry Sherri! They were really such great kids, and so mature and
amazing for their age! After Miranda left, I was talking with some of the
nurses, and they thought that they were much older teens than 13 and 14
since they were so mature and responsible! I am sure that it was not the
trip that they had hoped for, since they got very little sight seeing, but
we hope that maybe future trips will be better.

I really have enjoyed being around you all, and will try to give you a call
Sherri! If anyone wants to call me, my number is 415-831- 8782. I will be
gone for a few days this week to visit family, but will be back next Monday.
I can't believe I am actually going to go somewhere so soon, but it is just
a few hours to the grandparents house. I finally got the laundry done, etc.
and now the luggage is out again! I am hoping to relax for a few days!

Sorry for the long letter, but I hope that it can be helpful to any of the
future withdrawl patients! I would love to hear from the rest of you brave
trailblazers that have gone through this too! Despite it all, it is worth
it, and Seth is doing wel with the medicine, and is starting to get over his
needle issues (the lab fiasco was a real setback).

Best wishes,

Karen Durrant



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