Happy New Year from us too

 

Louise and Tom in Australia

 

 

----- Original Message -----

From: Terry & Camille Lieffers

To: NOMID EGROUP

Sent: Sunday, December 31, 2006 7:11 AM

Subject: [nomidsyndrome] Happy New Year

Happy New Year to All!!

I pray that 2007 will be an exceptionally great year for all of our families, especially for all of our  angels to whom we care for. 

Alice and I will at the NIH the week of the 21st of January for her 3 year check up.  Anyone else scheduled to be there?  Hope so.......

 

Camille

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----- Original Message -----

From: Terry & Camille Lieffers

To: NOMID EGROUP

Sent: Sunday, December 31, 2006 7:11 AM

Subject: [nomidsyndrome] Happy New Year

Happy New Year to All!!

I pray that 2007 will be an exceptionally great year for all of our families, especially for all of our  angels to whom we care for. 

Alice and I will at the NIH the week of the 21st of January for her 3 year check up.  Anyone else scheduled to be there?  Hope so.......

 

Camille

Karen, It was great talking to you!  I still got the email wrong! LOL.
Email me at FrankandShannon23@..., that way I will have it and
I will send the slideshow.  Not sure if would work to go to the kodak
site and type in my email.  Either way send me your email!
Good luck next week!
Shannon

I took the urine sample up today.  I know he wants to get the results
before the MRI b/c she just had one a few months ago on her head.  I
guess to limit exposure...I wish they could just do it all in one day!
I don't think these drs understand the agony of waiting for results!  I
really dont.
Thank you all again.  We will still be at the NIH on January 7 for
check in.  I would like to leave my cell number so that people visiting
at the same time can call and we can meet!  It is 215 669 7905.  My
husband Frank will be there and just our Ashleigh and I.  Our older
four will be staying with my mom.
I hope you all have happy holidays!
Shannon
Ashleigh's Mommy

Today we saw Dr. Valencia, the neurologist at St. Chris's. He believes
the reason for Ashleighs Nystagmus may possibly be neuroblastoma...He
sent me home with U bags and a cup to take a urine sample up to Quest
labs to check for two things in her urine which are metabolic
breakdowns of dopamine and something else...the abbreviations are out
of my head right now. I am sick. As if dealing with the other things
weren't enough...to possibly tell someone there child could have a
tumor? It makes me so sad to look at her...between the rash...the
fever...the eyes spasming constantly and her head shaking, my heart
breaks.

Today we saw Dr. Valencia, the neurologist at St. Chris's. He believes
the reason for Ashleighs Nystagmus may possibly be neuroblastoma...He
sent me home with U bags and a cup to take a urine sample up to Quest
labs to check for two things in her urine which are metabolic
breakdowns of dopamine and something else...the abbreviations are out
of my head right now. I am sick. As if dealing with the other things
weren't enough...to possibly tell someone there child could have a
tumor? It makes me so sad to look at her...between the rash...the
fever...the eyes spasming constantly and her head shaking, my heart
breaks.

Shannon, I am so sorry and so sad that you are dealing with this.
Did they do an MRI?  When will you know for sure?  I don't know your
faith, but I strongly believe in mine, and I will pray for your
strength and for Ashleigh's healing. I have seen miracles Shannon.
Hold tight to your baby and know she feels your love.  Let us know
more as you find out...we're all here for you.
Michele

--- In nomidsyndrome@yahoogroups.com, "irishmommieto5"
<irishmommieto5@...> wrote:
>
> Today we saw Dr. Valencia, the neurologist at St. Chris's.  He
believes
> the reason for Ashleighs Nystagmus may possibly be
neuroblastoma...He
> sent me home with U bags and a cup to take a urine sample up to
Quest
> labs to check for two things in her urine which are metabolic
> breakdowns of dopamine and something else...the abbreviations are
out
> of my head right now.  I am sick.  As if dealing with the other
things
> weren't enough...to possibly tell someone there child could have a
> tumor?  It makes me so sad to look at her...between the rash...the
> fever...the eyes spasming constantly and her head shaking, my
heart
> breaks.
>

Today we saw Dr. Valencia, the neurologist at St. Chris's.  He believes
the reason for Ashleighs Nystagmus may possibly be neuroblastoma...He
sent me home with U bags and a cup to take a urine sample up to Quest
labs to check for two things in her urine which are metabolic
breakdowns of dopamine and something else...the abbreviations are out
of my head right now.  I am sick.  As if dealing with the other things
weren't enough...to possibly tell someone there child could have a
tumor?  It makes me so sad to look at her...between the rash...the
fever...the eyes spasming constantly and her head shaking, my heart
breaks.

They are possibly thinking Ashleigh nystagmus.  She had an EEG
yesterday and that ruled out seizure activity.  She goes tomorrow for
her regular appointment with the neurologist.  Anyone else hear of
this?
Shannon

Hi everyone,

In the never ending saga of Michael's eye issues.... I went to the
pediatrician this am only to be brushed off by him too, still no
real look at his eyes and the "emergency" opthamologist appointment
is not untill Friday.  I know Karen wrote about Seths experiences
with it but is there anyone else here who has had it? Today Michael
was cranky and as the night wears on he is starting to get really
upset about light and now his back is bothering him again, he says
he can't lie or it hurts.  He is doing his spinning thing and he is
really clumsy, this happened almost every time he has a bad flare.
To make things a little more interesting he took a header off some
steps tonight so now he also has a black eye, it is almost funny at
this point, I should put him an isolated padded room before anything
else goes wrong.

Shannon and Frank, Michael has always done strange things with his
head also, as a baby he'd bang his head, hit it, crawl around and
drag it on the floor.  Once he could walk he started to spin around
and put his eyes up in his head funny, he also used to get alot of
strange staring spell where it was like he had lost conciousness for
a couple minutes.  Michael had issues with his knees,hips and hands,
and he took a long time to walk, and when he finally did he had alot
of really bad episodes where he would stop bearing weight completly,
before the NOMID diagnosis they said it was caused by synovitis,
both transient and toxic episodes, his hips took the brunt of the
damage.  Has Ashleigh had a Lumbar puncture or skin biopsy?  I hope
that you find the NIH and the anakinra brings you some help, releif
for your daughter and hope and understanding for you.

Kate, how is Alex doing these days?  Stephen still asks about him.
When are you going back to the NIH again?  Were you able to wean him
off the steriods?

Sheri, how is Miranda, have things gotten better at all?

I wish we all weren't so spread out over the world, I would give
anything to be able to get together and chat.  It is so hard to
really communicate through written word and to ever really share the
little details we often forget.

Bye for now,
Karen (Miko's mommy)

Michele,
Thank you so much for getting back.  Ashleigh will be 18 months old
tomorrow.  Her symptoms started at 5 weeks old.  A rash that is over
mostly her arms and legs and never completely goes away...during
flare ups its red, then fades to pink, then to an off color but you
can always see the rash.  No one knew what was wrong.  She saw
dermatologist...Our pediatician said over and over it was "just a
virus", but I started charting the rash pattern and fevers and knew
it was more than a virus...We evenutally wound up with Dr. Goldsmith
at St. Christopher's in Philadelphia.  We are from Trevose, PA, a
suburb of Philadelphia. During flares ashleigh also has a problem
with her knee, she will not crawl on it. She also loses her appetite
and is extremely cranky and sleepy.  This lasts from a day to 6 days
at the most.  She now is experiencing some other problems with head
shaking and eye spasms.  We see the neurologist here on Thursday.  I
can't wait to get to the NIH and get some medication.  We are having
a hell of a time getting the anakinra.  At first our insurance didn't
give approval.  Then they did, but they were having a problem
figuring out how to dispense it.  Thankfully, Dr. Goldsmith met up
with Dr. Goldbach at a rheumatology convention in washington d.c. and
they got us in as soon as they could which is January 8th.  I
submitted ashleighs story and photos to the nomid site but I am not
sure if it is still being maintained...I will say a prayer for all of
you and your precious little ones!
Shannon
--- In nomidsyndrome@yahoogroups.com, <mmkcgriffin@...> wrote:
>
> Take a deep breath.  It is all going to be ok.  Forgive me for not
knowing...how old is Ashleigh and what are her main problems?  It is
probably a good thing not bringing all the kids, unless you have
someone come with you who can take care of them at the Inn while you
and Ashleigh are at clinic.  Where are you from?
>
> The Inn is a great place.  It is cathartic being there.  It puts
your problems into perspective.  You meet other parents whose
children have rare diseases just like NOMID.  We are the norm there.
There are kids running around with no hair from cancer treatments,
kids in wheelchairs who look sicker than you could ever imagine, and
kids that have all sorts of physical deformities.  My son no longer
takes a second look at these kids.  It is all "normal." to him.  It
warms your heart to see a place where everyone feels at home.
>
> I do remember feeling very overwhelmed at first.  When we started
going, long distance on cell phones was expensive, they have free
watts lines there that you can call anyone in the world for free.
All of the wonderful games, volunteers, food, computers, toys, free
room and board etc..was very overwhelming.  That people would care so
much about the children that they donate sooooooo much to all of us
is quite overwhelming.  You end up spending quality time with your
child and bonding during the experience.  It is sometimes difficult
raising a child with a chronic disease that we know so little about.
None of your friends have any idea what you are going through.  I
probably spoil him more than I should, and have less discipline than
I should, but when you don't know what tomorrow brings, spanking over
eating an extra piece of candy sounds stupid...all you want to do is
love them and protect them for as long as you can.
>
> You will get a really good baseline of Ashleigh's condition and get
to meet all kinds of doctors.  Whatever you need...they provide.  It
is a wonderful use of our tax dollars.
>
> Let me know if you have any questions!!!  IT WILL BE OK!!!
> Michele
> ---- roxie <irishmommieto5@...> wrote:
> > I spoke to Nikki and she said for the first appointment they make
the reservations at the Inn...Follow ups are up to us.  I am a
nervous wreck!  We are just bringing Ashleigh. We have four older
children, 7 year old twins, 5 yr old and a 3 year old, but I can't
see them behaving during all the testing etc.  So they are staying
with my mom.  I haven't received any schedule yet, I should be
receiving information in the mail soon.  I look forward to meeting
you!
> >
> > ---------------------------------
> > Everyone is raving about the all-new Yahoo! Mail beta.
>

Hi Shannon, Alex had this same thing as a baby but nothing came of it, we
had a few EEG's and it was blown off.

By the way welcome to the group, if you would like to send in your story and
photos please send to our home address and John will add them.

Regards, Kate

Ashleigh has had some head shaking, side to side for about a month
now...also her right eye spasms side to side

Hi Everyone,
Ashleigh has had some head shaking, side to side for about a month
now...also her right eye spasms side to side.  We meet with the
neurologist on Thursday at St. Chris's.  Has anyone else had any
experience with this kind of problems?
Please email me or call me at 215-354-1216, you can email me here or at
our shared email, frankandshannon23@....
Thanks so much,
Shannon

Thanks Karen for your letter, I am so tired right now and
spontaneously combusting!  I hope you did not think I was refering
to anyone here when I made the comment about others trivial
problems, god knows that everyone here has many odds stacked against
them and problems that most could not fathom.  I just get so
frustrated when I hear friends, family overdramatize the most
trivial issues.  Well as for Michael, he did improve somewhat over
the day today but in the last 3 hours he has worsened again.  I
can't understand why this happens, but it is a pattern now and his
eyes get worse at night?  I upped his anakinra and I must say I was
pleased that his rash has subsided as soon as it was increased, it
was getting bad after all his troubles crept back.   I also had a
call from Dr Rajan at the NIH today, she was concerned about
Michael.  I am so grateful to have found the NIH, I just can;t
immagine what I'd do without them.  It is a relief (though in a
rather selfish way) to know they also think the lack of concern is
wrong, I ususally relive every interaction thinking I must have sone
something, I expect too much of them.  I am just waiting for morning
now so I can go pound on the pediatricians door and get him looked
at and some answers.  I forced myself to go out and get a Christmas
tree today, once I saw Stephen and Michael get all excited I could
not help but get a little excited for Christmas too, Thank God for
children and their innocence and wonder.  I better go, thanks Karen.

luvs, Karen (Miko's mommy)

Dear Karen A.,

I am so sorry that you are dealing with such a nightmare up there in
Canada. Seth had plastic uveitis/iritis first in 2004, and it started
as a little redness in the outer edge of the eye, then got more red
and moved towards his cornea, and he was light sensitive, etc. It did
not look much redder than pink eye, so I had no idea it was something
so bad, and felt guilty that I waited a day to see someone. He had a
sinus infection that triggered it. The first doctor we saw was over a
weekend, (not my regular MD) and we got blown off too.  They did not
even want to call an eye specialist to see him, and thought we could
wait until the Monday. I remember trying to convince her that maybe we
should see someone over the weekend, but she took a look, and thought
it was conjunctivitis, or a reaction to the eye medication I had
started to use at home (I had some on hand and had started it the day
before we saw the doctor, since Seth had a histroy of conjunctivitis,
and thought maybe that it was happening again.) and did not take us
seriously.  I even had to beg her to treat his sinus infection!

Well, when the eye doctor saw his eyes on that Monday, he was beyond
mad that no one called the on-call MD in, and we had to agressively
treat Seth's uveitis/plastic iritis with eye drops every 1-2 hours,
and were in contact with Dr.Rubin at the NIH to suggest treatment.
Between him and our eye doctor here, Seth's eyes were spared permanent
damage. I freaked when I found out how severe his eyes really were,
since the outer eye was not that red, but the inside anterior chamber
of the eye was white-out on the CT scan with inflammation! I had to
keep Seth home from school for 2 weeks, since he was getting all those
eye drops all the time, and also had one pupil dilated due to the
medications.   Seth had a few more bouts of this eye problem until he
got his tonsils out in 2005, which stopped him from having chronic
sinus problems. Luckily, whenever I see any eye issue, I start the
prednisone drops, and get him in to the eye doctor fast, and things
have never gotten as bad ever again.

You are in my thoughts and prayers.  I should not ever complain at
all, you have it way worse, and so do many others, but we all get
frustrated. Even though going to the NIH right before Christmas is not
my idea of fun, and we may even have to be there on the holiday, I am
glad to be going there so that we can figure out what is going on with
Seth.

I am tired of wondering what is going on, and nothing we are trying
here is working, but we are waiting to do the LP and stuff at the NIH,
since Seth has so many problems with them, and I dread having doctors
that do not know his history or the sysdrome mess with him in that way
here.

I feel your pain, anger and aggravation.  It is ok to be mad, you are
going through a lot, and all you want is your child to get some help,
and no one is helping! That makes me mad too, and I want to get more
of these doctors outside the NIH to "get it" about the odd things with
this syndrome that are not in the literature yet, but are real
problems.  It seems that we as parents are the only ones that seem to
know what is up when we go to regualar doctors at home, and that is
frustrating, since we are at their mercy. Then, we start to feel like
a lioness protecting her cubs, which is not pretty!

Sometimes it would be nice to be able to make commitments and plans
with life, work, etc. and actually get to follow thorugh with them! I
guess that is more what I was feeling about having to change our
holiday plans, and disappoint our family, cousins and our kids more
than about the trip itself. (It is always easier to do Christmas at
home.)  We all have to cancel out on so many things so much, that you
wish that once in awhile, things would just go as planned.  I have
even started to plan that something will happen so that if it never
does, I am pleasantly surprised and delighted, but if something
happens I figure that I had already figured it would, and try not to
let it throw me as much.

I am sorry that work sounds bad too for you. It seems that whenever
the kids are not well, it hits at the worst time in life, with work,
etc. Not that it is ever convenient, but it is uncanny how often
things happen at the worst possible times. I wish that the sweepstakes
people would land on your doorstep, so you could have tons of money,
and get to be home with your boys!

I hope that you can get some peace over the holidays.  I am so sorry
that Christmas is not bringing you joy this year, but more stress.  I
wish that we lived closer, and could give you a break.

If you continue to have trouble with getting care in Canada, see if
the NIH can bring you down ASAP to have your son seen. I feel for you,
it is so hard to have some health care system be the gatekeeper to
your child's care and health, and it can drive you crazy!

Have you been able to find any good pediatrician there, hopefully one
that knows lots of specialty doctors?  One good pediatrician can get
you in the door to anyone.

I agree going to the ER is often a waste of time, and money, and I am
so sorry that you had to deal with that. I have only found them
helpful if my child is near death, but other things, especially the
eye issues are never dealt with well.  Seth's eye doctor said to just
call him instead now!  We are lucky that the eye doctor Seth was sent
to with his uveitis gave me a direct line to call him ,and even his
home number, if needed, during our crisis.  I cannot tell you how
thankful I was to have that, and we are lucky to have a good
pediatrician too, but he was out of town during the first uveitis, and
it was on a weekend, so we saw some doctor that was moonlighting, and
a waste of time.

Now, it is hard to fully trust unknown doctors back home, since they
usually have never heard of NOMID, and do not really get it.

I too am concerned that so many kids are struggling right now too.  I
just started a now lot number of Anakinra, since I discovered that
Seth has had one full month on one lot ,and our other box had the same
lot number that we had started last week.  If there is a dramatic
change, I am going to have the other lot # syringes tested, and
contact the NIH and the company. I wish that there was more options
out there for these kids, besides the Kineret, and corticosteroids,
and a few other potent drugs.  The Kineret is good, but I am worried
that now, after almost 3 years on it, Seth may be developing
resistance or something.  I have always worried about this
possibility, but there's not much else one can do but hope that they
can find something that will help.

Call me any time-night or day, if you need to talk.  I am SERIOUS!  I
would call you right now, but fer I may wale you up, and you need the
rest. My number is: 415-831-8782

Best wishes, and hugs from afar!

Karen Durrant

Hi everyone, I just got back from running around like a chicken
trying to find someone to check Michael out and I am ready to
explode.  Michael has had a lingering flare that is going on a
couple weeks, it has beed under control enough that I have been able
to manage him and aside from not getting any sleep was doing OK.
That was untill the last 3 days when Michael started freaking out
about his head and eyes, and his reaction with his eyes is unlike
ever before.  I know he needs to be looked at, I called my doc, no
answer all day Friday, called local optometrist, no luck, no one
that was open would see him citing he is too young and no one knows
NOMID (surprise surprise).  I called Nicole at the NIH to see what
they thought after explaining his symptoms Nicole called back and
asked me to take him to emerg to rule out anterior (plastic)
uveitis.  My experiences with hospitals in Canada have been horrible
(i.e. the time I brought him in with severe neurological symptoms
and they sent him home, he then had a stroke).  I decided to take
the advice of friends and took him to a new hospital, well they are
all the same.  I swear NOMID here in Canada is comparable to the
AID's virus 20 years ago, they run from him everytime.  I sat in the
waiting room for 4 hours (which is actually good, the average at my
other hospital is 8 hours) and then another 2 in a room waiting for
the doc, the only interaction I had was with the Triage nurse and
that was a whopping 2 minutes.  They never did vitals, no questions,
never queried his meds, asked if he was OK, I was dumbfounded,
literally NO CONTACT.  When the doc finally came in he snapped at me
that I should never have gone there in the first place, he did not
listen to so much as a word I said, refused to take Dr GB's # and
just left the room, he grunted he'd be back in a minute, 1/2 hour
later I was fit to be tied and just walked out.  The funny thing
about that is no one did anything, no calls to see what happened to
me nothing, I wonder is they even noticed I even left yet.  I think
that is unacceptable when you think Michael is an infant with a
complex medical history and was checked in to an ER, then
disappeared?  I will never go there again needless to day.  When I
got home I called the NIH again cause I really am worried and Dr
Goldbach called me back (at 11:00pm Friday night) it just reinforced
my absolute amazement with the NIH and what an amazing woman
Raphaela is, she truly cares about our kids and the committment is
not limited to office hours.  I am so grateful for her and at the
same time it angers me beyond reason that my son allways has to
suffer here, no one is accountable, I can't immagine what I'd do
without her! I spent the day today again trying to find someone to
look at him and nothing, I am so angry and scared.  I am so scared,
I know my son and I know when something is really wrong and when it
could wait, but I can do nothing for him.  We all know how serious
things are with these kids and I should not know more than the
doctors, I am terrified of him when he gets sick, I now have to wait
untill Monday and hope.  It is strange that it seems alot of our
kids are haveing flares now.   I think of you all constantly.  I
think the stress is getting to me, I am worn out, angry,
overextended.  I am not even looking forward to Christmas (bah
humbug), I have an audit at work next week and now with Michael's
issues I know I am going to get crapped on by everyone, no doublt
every problem will be because of me.  I just hate it! I don't want
to make my life public there and when I hear the crap people say I
could scream! I think to myself as I listen to some people, I wish
attending a dreaded family function over Christmas was the only
problem in my life I would be a completly different person".  Karen,
I totally know what youre saying and maybe it is a bit of PMS for me
but I am liable to explode on the next person who looks at me
cockeyed!  Well I better go, I think I hear someone getting up.  I
have you all in my thoughts and hope we can all shake this out soon
and enjoy a happy, somewhat healthy holiday.

Luvs to you all,
Karen (Miko's mommy)

Dear All,

Seth is still suffering from bad headaches daily, even on the
increased Anakinra dose. He has been taking Motrin to help the pain,
but nothing seems to do much for him. He saw his eye doctor on
Tuesday, and the papilledema has not really gotten any worse, and was
mild to begin with, but the headaches are a big indicatior of
increased spinal fluid pressure. Also, Seth is now having double
vision, sometimes triple vision with the headaches, which is not good
either. (Evidently, he sees things stacked on top of each other, like
a totem pole of heads of one person.)

So, I am awaiting Nikki's call or e-mail about when we will return
this month to the NIH. It will probably be the week of the 17-23rd.
but I am not sure yet of the dates. I fear that it will be a
challenge to get a flight too. This was not what we were planing for
the beginning of Christmas, but it is necessary. He will have the MRI
and umbar puncture under sedation, neurology and opthomology
appointments. I am not sure what else.

Thanks to all that have written about their headache issues,
especially Becky! I guess she shares the bad luck of NOMID headaches
and Diamox problems too. I wish that there were some other drug to
help the pressure. Diamox worke well, but Seth's body could not
tolerate it without toxic effects. Luckily, his liver labs are better
now that he is off the Diamox, but the negative is these headaches!

IF anyone will be there at the NIH the same week as us (if we get
appointments, and a flight) please let me know. It would be nice to
see someone else, and make this trip better. I am sure it is nice at
the Inn before Christmans, but so sad as well. We were planning a
trip to see relatives in Utah for Christmas, now that my husband's mom
has moved back there. We may now have to cancel the trip. We will
see what happens.

Dori, how was your trip? I am glad that there is some good news for
Kayla's eyes. I hav sent you and Jennifer, and the other Board
members of the NOMID Alliance some important documents, and things to
sign. Thanks for your help, and I will talk to you all as soon as I
can. Between all the stuff going on for Seth, and other things, I
have had no time. I can't believe that Christmas is right around the
corner!

Seth's C-reactive protein is high with all these headaches, so it is
all related to the syndrome. How is Alex doing? I think of him
often, especially now since Seth is having brian pressure issues. For
some reason, so far he has been spared mental or cognitive damage from
the high CSF pressure, but I worry about this, and how things will be
for him now. Luckily, he is doing well at school, but is very
fatigued, and not wanting to play on the playgorund when he is having
bad headache days, so that has been the hard part for him. He usually
has no problems with the school work, but the headaches make it hard
at times.

I am trying to be optimistic, but we really need a lot more research
and treatments for this syndrome. The Anakinra has been good for him,
and for 2 years, it was miraculous, but I worry now that it is not
enough anymore. The rashes are still gone, and he has good labs, but
his C-reactive protein is higher now with these headaches and flare
behavior. Sometimes I wonder if maybe it is just a bad batch of the
medicine this month, and maybe now that we are on a new box, as of
today, that maybe things will get better again, but it probably isn't
that simple.

Sorry to be down right now. I am also on my period, my birthday is
tomorrow, and I have been naughty on my diet this week, so I probably
should not have even posted!

Sherri-how are you all doing? I hope that no one gets sick the rest
of the year! How is Miranda doing? Say hi to all your great kids!

Best wishes,

Karen Durrant

Dear Michelle,

Thanks for the tip, we actually were on the same lot over the past 5
weeks, but just picked up a new batch today (and new lot) so I am
going to switch to it tomorrow and see what happens this week.

I am glad I am not the only one that thinks about this kind of stuff
as a possibility! It would be nice if that was all it was, but we
shall see.  It is so hard sometimes, because you would like it to be
something easy and simple, but that is not often the case. However, it
is just as easy to always think it is the NOMID, and not something
simple, so it can drive you crazy.

Good luck on going back to school for your NP degree!  I have always
planned to do that too, but figured I would wait until I really wanted
to do it, and work a lot more, since it takes time and money to get.
It is great that you are getting it done, and let me know what it is
like back in school.

I am just glad I turned down a new job a few months ago, even though
the money would be good, because I would have had to quit, or miss a
lot of work, due to Seth's bouts of trouble over the past few months.
I just had a strong feeling it was not  the right time for me to make
that commitment, and then a few weeks later, all the problems started.

I am trying to get excited about a trip to DC at Christmas time.  We
will be there from Dec 19-22nd, and are then going to fly to Utah to
join up with my husband Nate and older son, Ethan to see his family.
It all depends on what the doctors think about Seth, and his brain
pressure, since Utah is considered to have high elevation, and now
Seth cannot take Diamox  due to his toxicity issues in October. For
now, the flight is booked, but they are trying to decide if it is a
good idea or not.  Luckily, Nate and Ethan will be driving (although
not fun, and I worry about that too) so as long as we know what to do
about the trip by Thursday morning, they can change their minds and
stay home. It would be sad if they took off, and then we could not
join them, or if something goes badly ,and we have to stay at the NIH
for Christmas.

Considering Seth's track record for bad headaches and problems after
LP's I am always prepared for trouble now,  He stays on flat bedrest
for 8 hours or more, sometimes longer, to reduce the spinal headaches,
and has lots of IV fluids, but still he always has trouble.  (And this
was when he was not so symptomatic with higher CSF pressure!)

I may try to get tickets to see the White House at Christmas, but it
may be too late.  I will try, once I know our schedule better this
coming Monday.  It would be fun to see all the decorations. I am sure
the Children's Inn will be great, and luckily we are going to be
staying there this time, instead of inpatient.

Thanks for the support,

Karen Durrant




--- In nomidsyndrome@yahoogroups.com, "mmkcgriffin" <mmkcgriffin@...>
wrote:
>
> Karen,
> Try switching to a new package of Anakinra.  Look at the lot
> numbers.  It might not be that simple, but Kieran had a really bad
> month a while back and it stopped right about the time we switched
> boxes.  ?????  who knows, but a simple trial...  Thank goodness
> Kieran continues to do excellent on the Anakinra.  He has been on it
> for 1 1/2 years now.  Good luck.
>
> --- In nomidsyndrome@yahoogroups.com, "sfokaren2003"
> <sfokaren2003@> wrote:
> >
> > Dear All,
> >
> > Seth is still suffering from bad headaches daily, even on the
> > increased Anakinra dose.  He has been taking Motrin to help the
> pain,
> > but nothing seems to do much for him.  He saw his eye doctor on
> > Tuesday, and the papilledema has not really gotten any worse, and
> was
> > mild to begin with,  but the headaches are a big indicatior of
> > increased spinal fluid pressure.  Also, Seth is now having double
> > vision, sometimes triple vision with the headaches, which is not
> good
> > either.  (Evidently, he sees things stacked on top of each other,
> like
> > a totem pole of heads of one person.)
> >
> > So, I am awaiting Nikki's call or e-mail about when we will return
> > this month to the NIH.  It will probably be the week of the 17-
> 23rd.
> > but I am not sure yet of the dates.  I fear that it will be a
> > challenge to get a flight too.  This was not what we were planing
> for
> > the beginning of Christmas, but it is necessary.  He will have the
> MRI
> > and umbar puncture under sedation, neurology and opthomology
> > appointments.  I am not sure what else.
> >
> > Thanks to all that have written about their headache issues,
> > especially Becky!  I guess she shares the bad luck of NOMID
> headaches
> > and Diamox problems too.  I wish that there were some other drug to
> > help the pressure.  Diamox worke well, but Seth's body could not
> > tolerate it without toxic effects.  Luckily, his liver labs are
> better
> > now that he is off the Diamox, but the negative is these headaches!
> >
> > IF anyone will be there at the NIH the same week as us (if we get
> > appointments, and a flight) please let me know.  It would be nice
> to
> > see someone else, and make this trip better.  I am sure it is nice
> at
> > the Inn before Christmans, but so sad as well.  We were planning a
> > trip to see relatives in Utah for Christmas, now that my husband's
> mom
> > has moved back there.  We may now have to cancel the trip.  We will
> > see what happens.
> >
> > Dori, how was your trip?  I am glad that there is some good news
> for
> > Kayla's eyes.  I hav sent you and Jennifer, and the other Board
> > members of the NOMID Alliance some important documents, and things
> to
> > sign.  Thanks for your help, and I will talk to you all as soon as
> I
> > can.  Between all the stuff going on for Seth, and other things, I
> > have had no time.  I can't believe that Christmas is right around
> the
> > corner!
> >
> > Seth's C-reactive protein is high with all these headaches, so it
> is
> > all related to the syndrome.  How is Alex doing?  I think of him
> > often, especially now since Seth is having brian pressure issues.
> For
> > some reason, so far he has been spared mental or cognitive damage
> from
> > the high CSF pressure, but I worry about this, and how things will
> be
> > for him now.  Luckily, he is doing well at school, but is very
> > fatigued, and not wanting to play on the playgorund when he is
> having
> > bad headache days, so that has been the hard part for him.  He
> usually
> > has no problems with the school work, but the headaches make it
> hard
> > at times.
> >
> > I am trying to be optimistic, but we really need a lot more
> research
> > and treatments for this syndrome.  The Anakinra has been good for
> him,
> > and for 2 years, it was miraculous, but I worry now that it is not
> > enough anymore.  The rashes are still gone, and he has good labs,
> but
> > his C-reactive protein is higher now with these headaches and flare
> > behavior.  Sometimes I wonder if maybe it is just a bad batch of
> the
> > medicine this month, and maybe now that we are on a new box, as of
> > today, that maybe things will get better again, but it probably
> isn't
> > that simple.
> >
> > Sorry to be down right now.  I am also on my period, my birthday is
> > tomorrow, and I have been naughty on my diet this week, so I
> probably
> > should not have even posted!
> >
> > Sherri-how are you all doing?  I hope that no one gets sick the
> rest
> > of the year!  How is Miranda doing?  Say hi to all your great
> kids!
> >
> > Best wishes,
> >
> > Karen Durrant
> >
>

Dear All,

Seth is still suffering from bad headaches daily, even on the
increased Anakinra dose. He has been taking Motrin to help the pain,
but nothing seems to do much for him. He saw his eye doctor on
Tuesday, and the papilledema has not really gotten any worse, and was
mild to begin with, but the headaches are a big indicatior of
increased spinal fluid pressure. Also, Seth is now having double
vision, sometimes triple vision with the headaches, which is not good
either. (Evidently, he sees things stacked on top of each other, like
a totem pole of heads of one person.)

So, I am awaiting Nikki's call or e-mail about when we will return
this month to the NIH. It will probably be the week of the 17-23rd.
but I am not sure yet of the dates. I fear that it will be a
challenge to get a flight too. This was not what we were planing for
the beginning of Christmas, but it is necessary. He will have the MRI
and umbar puncture under sedation, neurology and opthomology
appointments. I am not sure what else.

Thanks to all that have written about their headache issues,
especially Becky! I guess she shares the bad luck of NOMID headaches
and Diamox problems too. I wish that there were some other drug to
help the pressure. Diamox worke well, but Seth's body could not
tolerate it without toxic effects. Luckily, his liver labs are better
now that he is off the Diamox, but the negative is these headaches!

IF anyone will be there at the NIH the same week as us (if we get
appointments, and a flight) please let me know. It would be nice to
see someone else, and make this trip better. I am sure it is nice at
the Inn before Christmans, but so sad as well. We were planning a
trip to see relatives in Utah for Christmas, now that my husband's mom
has moved back there. We may now have to cancel the trip. We will
see what happens.

Dori, how was your trip? I am glad that there is some good news for
Kayla's eyes. I hav sent you and Jennifer, and the other Board
members of the NOMID Alliance some important documents, and things to
sign. Thanks for your help, and I will talk to you all as soon as I
can. Between all the stuff going on for Seth, and other things, I
have had no time. I can't believe that Christmas is right around the
corner!

Seth's C-reactive protein is high with all these headaches, so it is
all related to the syndrome. How is Alex doing? I think of him
often, especially now since Seth is having brian pressure issues. For
some reason, so far he has been spared mental or cognitive damage from
the high CSF pressure, but I worry about this, and how things will be
for him now. Luckily, he is doing well at school, but is very
fatigued, and not wanting to play on the playgorund when he is having
bad headache days, so that has been the hard part for him. He usually
has no problems with the school work, but the headaches make it hard
at times.

I am trying to be optimistic, but we really need a lot more research
and treatments for this syndrome. The Anakinra has been good for him,
and for 2 years, it was miraculous, but I worry now that it is not
enough anymore. The rashes are still gone, and he has good labs, but
his C-reactive protein is higher now with these headaches and flare
behavior. Sometimes I wonder if maybe it is just a bad batch of the
medicine this month, and maybe now that we are on a new box, as of
today, that maybe things will get better again, but it probably isn't
that simple.

Sorry to be down right now. I am also on my period, my birthday is
tomorrow, and I have been naughty on my diet this week, so I probably
should not have even posted!

Sherri-how are you all doing? I hope that no one gets sick the rest
of the year! How is Miranda doing? Say hi to all your great kids!

Best wishes,

Karen Durrant

__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Dear All,

Seth is still suffering from bad headaches daily, even on the
increased Anakinra dose. He has been taking Motrin to help the pain,
but nothing seems to do much for him. He saw his eye doctor on
Tuesday, and the papilledema has not really gotten any worse, and was
mild to begin with, but the headaches are a big indicatior of
increased spinal fluid pressure. Also, Seth is now having double
vision, sometimes triple vision with the headaches, which is not good
either. (Evidently, he sees things stacked on top of each other, like
a totem pole of heads of one person.)

So, I am awaiting Nikki's call or e-mail about when we will return
this month to the NIH. It will probably be the week of the 17-23rd.
but I am not sure yet of the dates. I fear that it will be a
challenge to get a flight too. This was not what we were planing for
the beginning of Christmas, but it is necessary. He will have the MRI
and umbar puncture under sedation, neurology and opthomology
appointments. I am not sure what else.

Thanks to all that have written about their headache issues,
especially Becky! I guess she shares the bad luck of NOMID headaches
and Diamox problems too. I wish that there were some other drug to
help the pressure. Diamox worke well, but Seth's body could not
tolerate it without toxic effects. Luckily, his liver labs are better
now that he is off the Diamox, but the negative is these headaches!

IF anyone will be there at the NIH the same week as us (if we get
appointments, and a flight) please let me know. It would be nice to
see someone else, and make this trip better. I am sure it is nice at
the Inn before Christmans, but so sad as well. We were planning a
trip to see relatives in Utah for Christmas, now that my husband's mom
has moved back there. We may now have to cancel the trip. We will
see what happens.

Dori, how was your trip? I am glad that there is some good news for
Kayla's eyes. I hav sent you and Jennifer, and the other Board
members of the NOMID Alliance some important documents, and things to
sign. Thanks for your help, and I will talk to you all as soon as I
can. Between all the stuff going on for Seth, and other things, I
have had no time. I can't believe that Christmas is right around the
corner!

Seth's C-reactive protein is high with all these headaches, so it is
all related to the syndrome. How is Alex doing? I think of him
often, especially now since Seth is having brian pressure issues. For
some reason, so far he has been spared mental or cognitive damage from
the high CSF pressure, but I worry about this, and how things will be
for him now. Luckily, he is doing well at school, but is very
fatigued, and not wanting to play on the playgorund when he is having
bad headache days, so that has been the hard part for him. He usually
has no problems with the school work, but the headaches make it hard
at times.

I am trying to be optimistic, but we really need a lot more research
and treatments for this syndrome. The Anakinra has been good for him,
and for 2 years, it was miraculous, but I worry now that it is not
enough anymore. The rashes are still gone, and he has good labs, but
his C-reactive protein is higher now with these headaches and flare
behavior. Sometimes I wonder if maybe it is just a bad batch of the
medicine this month, and maybe now that we are on a new box, as of
today, that maybe things will get better again, but it probably isn't
that simple.

Sorry to be down right now. I am also on my period, my birthday is
tomorrow, and I have been naughty on my diet this week, so I probably
should not have even posted!

Sherri-how are you all doing? I hope that no one gets sick the rest
of the year! How is Miranda doing? Say hi to all your great kids!

Best wishes,

Karen Durrant

Karen,
Try switching to a new package of Anakinra.  Look at the lot
numbers.  It might not be that simple, but Kieran had a really bad
month a while back and it stopped right about the time we switched
boxes.  ?????  who knows, but a simple trial...  Thank goodness
Kieran continues to do excellent on the Anakinra.  He has been on it
for 1 1/2 years now.  Good luck.

--- In nomidsyndrome@yahoogroups.com, "sfokaren2003"
<sfokaren2003@...> wrote:
>
> Dear All,
>
> Seth is still suffering from bad headaches daily, even on the
> increased Anakinra dose.  He has been taking Motrin to help the
pain,
> but nothing seems to do much for him.  He saw his eye doctor on
> Tuesday, and the papilledema has not really gotten any worse, and
was
> mild to begin with,  but the headaches are a big indicatior of
> increased spinal fluid pressure.  Also, Seth is now having double
> vision, sometimes triple vision with the headaches, which is not
good
> either.  (Evidently, he sees things stacked on top of each other,
like
> a totem pole of heads of one person.)
>
> So, I am awaiting Nikki's call or e-mail about when we will return
> this month to the NIH.  It will probably be the week of the 17-
23rd.
> but I am not sure yet of the dates.  I fear that it will be a
> challenge to get a flight too.  This was not what we were planing
for
> the beginning of Christmas, but it is necessary.  He will have the
MRI
> and umbar puncture under sedation, neurology and opthomology
> appointments.  I am not sure what else.
>
> Thanks to all that have written about their headache issues,
> especially Becky!  I guess she shares the bad luck of NOMID
headaches
> and Diamox problems too.  I wish that there were some other drug to
> help the pressure.  Diamox worke well, but Seth's body could not
> tolerate it without toxic effects.  Luckily, his liver labs are
better
> now that he is off the Diamox, but the negative is these headaches!
>
> IF anyone will be there at the NIH the same week as us (if we get
> appointments, and a flight) please let me know.  It would be nice
to
> see someone else, and make this trip better.  I am sure it is nice
at
> the Inn before Christmans, but so sad as well.  We were planning a
> trip to see relatives in Utah for Christmas, now that my husband's
mom
> has moved back there.  We may now have to cancel the trip.  We will
> see what happens.
>
> Dori, how was your trip?  I am glad that there is some good news
for
> Kayla's eyes.  I hav sent you and Jennifer, and the other Board
> members of the NOMID Alliance some important documents, and things
to
> sign.  Thanks for your help, and I will talk to you all as soon as
I
> can.  Between all the stuff going on for Seth, and other things, I
> have had no time.  I can't believe that Christmas is right around
the
> corner!
>
> Seth's C-reactive protein is high with all these headaches, so it
is
> all related to the syndrome.  How is Alex doing?  I think of him
> often, especially now since Seth is having brian pressure issues.
For
> some reason, so far he has been spared mental or cognitive damage
from
> the high CSF pressure, but I worry about this, and how things will
be
> for him now.  Luckily, he is doing well at school, but is very
> fatigued, and not wanting to play on the playgorund when he is
having
> bad headache days, so that has been the hard part for him.  He
usually
> has no problems with the school work, but the headaches make it
hard
> at times.
>
> I am trying to be optimistic, but we really need a lot more
research
> and treatments for this syndrome.  The Anakinra has been good for
him,
> and for 2 years, it was miraculous, but I worry now that it is not
> enough anymore.  The rashes are still gone, and he has good labs,
but
> his C-reactive protein is higher now with these headaches and flare
> behavior.  Sometimes I wonder if maybe it is just a bad batch of
the
> medicine this month, and maybe now that we are on a new box, as of
> today, that maybe things will get better again, but it probably
isn't
> that simple.
>
> Sorry to be down right now.  I am also on my period, my birthday is
> tomorrow, and I have been naughty on my diet this week, so I
probably
> should not have even posted!
>
> Sherri-how are you all doing?  I hope that no one gets sick the
rest
> of the year!  How is Miranda doing?  Say hi to all your great
kids!
>
> Best wishes,
>
> Karen Durrant
>

Dear All,

Seth is still suffering from bad headaches daily, even on the
increased Anakinra dose.  He has been taking Motrin to help the pain,
but nothing seems to do much for him.  He saw his eye doctor on
Tuesday, and the papilledema has not really gotten any worse, and was
mild to begin with,  but the headaches are a big indicatior of
increased spinal fluid pressure.  Also, Seth is now having double
vision, sometimes triple vision with the headaches, which is not good
either.  (Evidently, he sees things stacked on top of each other, like
a totem pole of heads of one person.)

So, I am awaiting Nikki's call or e-mail about when we will return
this month to the NIH.  It will probably be the week of the 17-23rd.
but I am not sure yet of the dates.  I fear that it will be a
challenge to get a flight too.  This was not what we were planing for
the beginning of Christmas, but it is necessary.  He will have the MRI
and umbar puncture under sedation, neurology and opthomology
appointments.  I am not sure what else.

Thanks to all that have written about their headache issues,
especially Becky!  I guess she shares the bad luck of NOMID headaches
and Diamox problems too.  I wish that there were some other drug to
help the pressure.  Diamox worke well, but Seth's body could not
tolerate it without toxic effects.  Luckily, his liver labs are better
now that he is off the Diamox, but the negative is these headaches!

IF anyone will be there at the NIH the same week as us (if we get
appointments, and a flight) please let me know.  It would be nice to
see someone else, and make this trip better.  I am sure it is nice at
the Inn before Christmans, but so sad as well.  We were planning a
trip to see relatives in Utah for Christmas, now that my husband's mom
has moved back there.  We may now have to cancel the trip.  We will
see what happens.

Dori, how was your trip?  I am glad that there is some good news for
Kayla's eyes.  I hav sent you and Jennifer, and the other Board
members of the NOMID Alliance some important documents, and things to
sign.  Thanks for your help, and I will talk to you all as soon as I
can.  Between all the stuff going on for Seth, and other things, I
have had no time.  I can't believe that Christmas is right around the
corner!

Seth's C-reactive protein is high with all these headaches, so it is
all related to the syndrome.  How is Alex doing?  I think of him
often, especially now since Seth is having brian pressure issues.  For
some reason, so far he has been spared mental or cognitive damage from
the high CSF pressure, but I worry about this, and how things will be
for him now.  Luckily, he is doing well at school, but is very
fatigued, and not wanting to play on the playgorund when he is having
bad headache days, so that has been the hard part for him.  He usually
has no problems with the school work, but the headaches make it hard
at times.

I am trying to be optimistic, but we really need a lot more research
and treatments for this syndrome.  The Anakinra has been good for him,
and for 2 years, it was miraculous, but I worry now that it is not
enough anymore.  The rashes are still gone, and he has good labs, but
his C-reactive protein is higher now with these headaches and flare
behavior.  Sometimes I wonder if maybe it is just a bad batch of the
medicine this month, and maybe now that we are on a new box, as of
today, that maybe things will get better again, but it probably isn't
that simple.

Sorry to be down right now.  I am also on my period, my birthday is
tomorrow, and I have been naughty on my diet this week, so I probably
should not have even posted!

Sherri-how are you all doing?  I hope that no one gets sick the rest
of the year!  How is Miranda doing?  Say hi to all your great kids!

Best wishes,

Karen Durrant

Take a deep breath.  It is all going to be ok.  Forgive me for not knowing...how
old is Ashleigh and what are her main problems?  It is probably a good thing not
bringing all the kids, unless you have someone come with you who can take care
of them at the Inn while you and Ashleigh are at clinic.  Where are you from?

The Inn is a great place.  It is cathartic being there.  It puts your problems
into perspective.  You meet other parents whose children have rare diseases just
like NOMID.  We are the norm there.  There are kids running around with no hair
from cancer treatments, kids in wheelchairs who look sicker than you could ever
imagine, and kids that have all sorts of physical deformities.  My son no longer
takes a second look at these kids.  It is all "normal." to him.  It warms your
heart to see a place where everyone feels at home.

I do remember feeling very overwhelmed at first.  When we started going, long
distance on cell phones was expensive, they have free watts lines there that you
can call anyone in the world for free.  All of the wonderful games, volunteers,
food, computers, toys, free room and board etc..was very overwhelming.  That
people would care so much about the children that they donate sooooooo much to
all of us is quite overwhelming.  You end up spending quality time with your
child and bonding during the experience.  It is sometimes difficult raising a
child with a chronic disease that we know so little about.  None of your friends
have any idea what you are going through.  I probably spoil him more than I
should, and have less discipline than I should, but when you don't know what
tomorrow brings, spanking over eating an extra piece of candy sounds
stupid...all you want to do is love them and protect them for as long as you
can.

You will get a really good baseline of Ashleigh's condition and get to meet all
kinds of doctors.  Whatever you need...they provide.  It is a wonderful use of
our tax dollars.

Let me know if you have any questions!!!  IT WILL BE OK!!!
Michele
---- roxie <irishmommieto5@...> wrote:
> I spoke to Nikki and she said for the first appointment they make the
reservations at the Inn...Follow ups are up to us.  I am a nervous wreck!  We
are just bringing Ashleigh. We have four older children, 7 year old twins, 5 yr
old and a 3 year old, but I can't see them behaving during all the testing etc. 
So they are staying with my mom.  I haven't received any schedule yet, I should
be receiving information in the mail soon.  I look forward to meeting you!
>
> ---------------------------------
> Everyone is raving about the all-new Yahoo! Mail beta.

Shannon,
I will be there at that time with my son Kieran.  We too are staying
at the Inn.  I would love to meet you and talk to you.  I have met
several families throughout the years.  We started 4 years ago, before
Anakinra was ever an option.  Bring books or computer games to play
between appointments, the kids tend to get board.  Also, make sure
Nikki emails you your schedule before you go.  If you don't get it,
call her.  The Inn has some food and does a grocery store run Sunday
or Monday evenings, but I always bring some cereal and snacks to tide
us over.  It is VERY expensive to eat at the clinic.  Let me know if
you think of any questions.  Kelle, Kieran has gut problems.  Dr. G
said it was probably inflammation in his intestines. It is MUCH better
since we started Anakinra.  Hope you all are well, I don't get much
time to write.  Karen, I am asking people to donate to our
foundation.  Hopefully I'll be able to get at least a little money.
You have done a great job.  Thank you for all you do, and thank
everyone else for their time on the board.  I am in grad school right
now so I have very little time.  I hope to be able to use my position
to education on NOMID. (Nurse practitioner)  Hopefully God will find a
way to use me to help out our kids somehow.  Take care all!

--- In nomidsyndrome@yahoogroups.com, "irishmommieto5"
<irishmommieto5@...> wrote:
>
> Hi Everyone,
> I was wondering if anyone will be at the NIH around the 8th of
> January?  I spoke to Dr. Goldbarch (sp?), and she said it would be a
3
> or 4 day stay.  We will be staying at the inn...this is all new to
me
> so I would like to talk to anyone who has been there for the initial
> evaluations...
> Thanks,
> Shannon
>