Dear Kathe,

I think that if you call Scott Canna, that is working
with the doctors at the NIH, he can give you all the
details about travel, and everything. His number is:
301-402-9633. You have to have your doctors, or
yourself contact the NIH, then they will set things
up. Your doctor has to fax or mail medical records,
etc, and a letter, but it is not too difficult.

As far as travel costs, etc., that depends on the NIH,
the study, and your needs. Often, for the first trip,
they want both parents there, and you do have to pay
your way for that first trip. however, this can all
depend on the studies, etc. The NIH and the Social
workers there can also arrange for travel with some of
the airlines programs for families traveling for
medical care, such as American Airlines" Miles for
Kids in Need".

We live in San Francisco, CA, but traveled on
Southwest very cheaply. We did bring our older son
too, since both my husband and I had to travel there
for the intitial evaluation and testing. This was
before the NOMID treatment protocol was esptablished,
so I do not know if you have to pay for the first trip
now that there is a protocol. The Children's Inn is
free for the families, and is a wonderful place to
stay. You may have your child's first visit as an
inpatient, I do not know what they will do for you,
but the rest of the family can stay at the Inn, and
you can leave the hospital on a pass to go to the Inn
for a few hours.

All the medications, medical care, tests, etc. are all
paid by the NIH (government)! This is really quite a
blessing, considering what it would cost us on our
own to duplicate the care they give. Seth's meds,
orthotics, etc. are all from them, so we are very
blessed right now. Eventually, our insurance will
have to cover (hopefully) the Anakinra, which I am not
looking forward to battling to get that covered.
Anyone have any advice on this?

You have the choice to drive, fly, or whatever you
prefer to get to the NIH. With a baby, I would fly!
The travel expense will be you biggest cost, other
than that, it is all covered, and you can take the
shuttle at the Children's Inn to the grocery store for
food to cook at the Inn, but as an inpatient, your
child will get meals.

As far as the fevers go, that is a regular occurance,
and Seth still gets them , even on the Anakinra, but
more often if he is needing an increased dose
adjustment, or something. He still gets them after he
is healing from a bad illness, it is like his body is
doing something after it is done fighting the
infection off, and is well again!

I do not know how many other kids do this, but I just
have gotten used to his patterns. before Anakinra, he
would be feverish for many days, or at least every
other day. This made day care, preschool ,etc
difficult. I confess that I have sent Seth to school
many times with a fever, if he is not ill, since it is
just his syndrome. If I kept him home for every
fever, even on the Anakinra, he would be out of school
more than would be wise!

He is a germ magnet, and there is the concern that
they can get more ill while on the Anakinra, but I
have not seen much change. Seth gets sick a lot even
before the Anakinra, and gets very ill, (such as sinus
infections, bronchitis, croup, pneumonia) before the
medication, so being on it is no different for us. He
still gets sinus infections, but needs his adenoids
out soon. Hopefully that will help.

I think he is healthier in general, now that he is on
the Anakinra, and does not get as long of illness
phases as before. Perhaps its is because his labs,and
anemia are ok now, so he has more reserves. Plus he
has grown and gained weight, and is on the growth
curve again, so that may help. Maybe it is because he
is older now, and getting more immune, I do not know.
I am just happy if we don't spend all winter sick!

Call me any time at 415-831-8782 if you need any other
info. The NIH is great but can be overwhelming at
first. You do in one week what on the outside would
be spread over months of appointments! The schedule
is packed, but it is worth it.

After the first trip, it is easier, since you will
know where to find things, the doctors, etc. ( Of
course, with the opening of the new hospital wing, it
is all going to be new to us old timers too) Also,
you will not have to tell his life story over and over
again! Be prepared to also have all his developmental
milestones written down, since they ask about when he
did sit up, get his first tooth, etc. at Rehab
appointments, and if I hadn't come prepared, I would
have been clueless because of all the business of the
week. Life can become a blur!

Best wishes to you, and all. Hopefully this info
helps you, Kathe, and any others new to the group.
Call Scott, or have your doctor call for you as well.
I do not know what protocol you will be on, so I do
not have specifics for you, but they will.

I also have no idea how young they will start a
patient on Anakinra either. However, considering it
is less horrible to the body than all the steroids and
other stuff they could do, I cannot think that it
would be any worse to start him while young. The
issue is that they probably have no data on young
children. It seems that many things they have no data
on, until after age 2, and that is not common.

Perhaps they will make a new protocol for babies! I
do hope that things go well for you all, and that
your child gets help soon. It sounds like you have
had an interesting and busy life with your family,
with a preemie, and now NOMID. The path may be
different than expected at times, but is all good in
the end. Things do get better. Both my kids were a
bit preemie, but Seth was at 33 weeks, so it was more
involved. Both have had years of speech therapy too,
but Ethan is now 7 1/2, and is doing great (he
graduated from speech at 6). There are still some
issues, and he still has some mild reflux, but nothing
like as a baby, where he had many porblems with his
stomach!

Karen Durrant









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