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