Dear Kim,

Thanks for writing. It was very comforting to hear your feelings about
people's statements about your child. I have sometimes been tempted to
say some things as well to people, but usually I keep it in. Maybe I
should let it out sometimes, but often I feel that the people who say
things wouldn't understand anyways, since they obviously are not keen
enough to be subtle in what they say!

It is interesting that others have noticed a correlation with sickness
and rash in their children. I am going to share this with Seth's
doctors, since they have been puzzled by this for years, and had never
heard of any other children having this symptom. For Seth, the rash is
a barometer with illness, because if the virus is severe, he is rash
free (If only he wasn't so sick looking in other ways I would try to
get a nice photo done!) but if it goes into a bacterial infection,
even an ear infection, the rash will flare up quickly. The rash has
even fared up specifically in large amounts on the side of the face
with the ear infection! In some ways, we are thankful for this,
because it really helps us to know better when he needs medical
attention. Yes, the doctors thought we were crazy at first, but now
that they have seen this in him for years, they accept it as truth.

As far as the appearance of the rash, it looks sometimes like the
ringworm description, but it changes. At the start of the rash flare
ups, the "spots" (that is what Seth calls them) are small and reddish
pink, but start expanding to big blotchy areas, with faded to yellowish
centers on some, and others are huge red, to almost purpulish pink red
blotches. He always has a rash, since a few days after birth, but over
the years, the rash has gotten more severe. As an infant he always had
some of the blotchy ringworm looking rash, and it like to be on his
face (why not somewhere else?) back, upper arms and legs, upper chest,
and sometimes on his soles and palms of his hand, and at the wrists.
This pattern continues today, but in the past 1 1/2 years, he can also
get dark pruplis raccoon eyes on bad flare ups, and the spots get big
and raised up in some areas. The skin is never rough or flaky, and the
rash fades to a pale dusky rose color before it goe away. Seth usualy
wakes up with. Until he went onto around the clock Naprosyn and
Zyrtec, we were treating him only on flare up days with Motrin and
Atarax. Once the flare ups became so frequent, and almost every other
day, we got him onto regular medicines, which have helped.

He also has bad head and back aches, stomach aches, leg and joint aches
and irritability with the flare ups, and has occasionally vomited bile
for a few hours until the fevers go down. Since being on the Naprosyn
and Zyrtec, he doesn't have a lot of visible face rash, unless it is a
flare up day, but he always has rash spots on his upper back, upper
arms and legs, and upper chest. Luckily, the severe suffering with the
flare ups has improved with the medicines, although Seth does still
complain about them during flare ups. I have to say it was scary to
see him wake up like that, and the first few times (the severe flare
ups with symptoms started at 9 months) we took him into the doctor's
since we were not sure what was going on. Now that we have dealt with
this for a few years (Seth is 3 1/2 years old now) we do not go in
unless it doesn't improve after a few hours, since he does get over it,
and once things subside, he eats and drinks well. He usually is very
tired, and will take a long afternoon nap, and wakes up dripping with
sweat and his bed is drenched in sweat, but the rash has faded a lot.
Its seems like his body has to release something.

Seth had a skin biopsy in 2001 that showed concentrations of
neutrophils around the eccrine coils (something with the sweat glands)
that is characteristically seen in NOMID children, so maybe this has
something to do with his sweating episodes. It is not just from the
fever, since that comes down with the medicines a few hours prior to
him going down for a nap.

We will be putting photos up soon, and we have some rash photos if you
want to see them as well. Hope this information helps to answer your
questions about the rash, and other who wondered about stomach aches.
Sorry it is so long. Thaks again for your interest and support. This
forum has really helped to increase my knowledge about this syndrome,
and find answers to questions I have had for awhile. Thanks to
everyone for sharing!

Karen Durrant

--- In nomidsyndrome@yahoogroups.com, "kim wisniewski" <
kalbert11@m...> wrote:
>