Thank you Kelly, I definately will!
Best,
Paula

--- In afha@yahoogroups.com, <renny01@v...> wrote:
>
> >From: pgpalmerino <gpalmerino@s...>
> >Date: Sun Jan 01 15:12:24 CST 2006
> >To: afha@yahoogroups.com
> >Subject: [ahc] New Member looking for answers
> Paula My name is Kelly All three of my children have ahc that
present in different ways but ian seems alot like my middle son
max. Feel free to call me at home 978 667 9601 I would love to help
if I can. I remember that feeling. Call me any time Everyone,
> >Please let me begin by wishing everyone a happy and healthy new
> >year! I'd also like to apologize for the length of this post, but
I
> >am looking for as much info as I can. I have been reading past
posts
> >and have found many of them to be very helpful, but because I
don't
> >want to miss anything and because I am looking to truly figure
out
> >(if possible)whether or not my son has this illness, I feel I
need
> >to share his story. My son Ian (who will be 3 in March)was given
a
> >working diagnosis of AHC this past June. We attended the
conference
> >in July, but in truth were still quite overwhelmed (we had also
just
> >had our second child in June). We watched, listened and
questioned
> >as much as we could and when all was said and done we were most
> >grateful for the opportunity to meet so many wonderful people and
> >learn so much about the illness. We were also entering a period
of
> >denial because Ian doesn't fit "the typical" description of AHC.
His
> >first episode came at 20 months, he was hospitalized and it
lasted
> >for one week in which he initially appeared to have the flu and
then
> >lost the use of his right side. After he came out of the episode
he
> >started to regain lost abilities, albeit he needed some
occupational
> >therapy to help him with his fine motor skills. After about four
> >months he appeared to be almost fully recovered. In the fifth
month
> >he evidenced some unusual blinking when watching videos, but that
> >only lasted for about a week. It was thought that he had caught a
> >fluke virus which caused some encephalitis, but that it had
passed
> >and he would recover. In June, 20 minutes after hitting his head,
he
> >had another episode. Almost immediately, he couldn't stand, and
was
> >limp.We thought it was a concussion, and after three hours in the
> >E.R. we realized that we had seen this behavior before. This time
it
> >was the left side and his episode lasted another week. Again, he
> >came out of it and again he started to recover. His gross motor
> >skills are now within his age group (we call him spiderman!)but
he
> >still needs to work on some fine motor skills. Again, to the
> >untrained eye, he appears fine. However, his speech is
approximately
> >10 months behind. He had another episode about one month ago
which
> >lasted about 6 or 7 hours. Again, it started about 20 minutes
after
> >hitting his head and again he was lethargic with flu like
symptoms
> >(vomiting and fever). The next day he was tired, but appeared
fine
> >again - no abilities lost. Just last week his calcium channel
block
> >test came back negative and it was bittersweet because on that
same
> >day he had started having another episode. It lasted on and off
all
> >day. There was no head bang preceding it and there was no
vomiting.
> >He was lethargic and had a fever. At first we thought he was
> >starting with a cold, but began questioning ourselves and
ultimately
> >the erratic eye movements confirmed the episode(s). He'd have one
> >episode, sleep, wake up and be fine and then become irritable and
> >we'd have him lie down. Another episode would start shortly
after,
> >and he would become lethargic and feverish. It happened at least
> >three times that day and then once the following day. Since then
we
> >have watched him like hawks and are seeing brief bouts of erratic
> >eye movement usually when he watches a video, and only sometimes
> >when he is playing or reading. Needless to say, we have cut down
on
> >the video watching. Fortunately, he does not appear to have lost
any
> >of his abilities, but he has been EASILY irritable all week. His
> >neurologist saw him on 12/17 and was very pleased with his
overall
> >health, strength and recovery, but still feels very strongly that
he
> >has AHC. So, after the recent round of episodes, I finally
decided
> >to check out the chat group (read: I finally got the courage up)
and
> >found some similarities with other children, but I was hoping to
> >find more (or less). We spoke with Dr. Silver in July and he
posited
> >that Ian may have more of a migraine version of the illness (if I
am
> >wording that correctly), and also Dr. Swoboda who commented that
if
> >he doesn't have AHC it is definately a cousin of AHC. Dr. Swoboda
> >said that she knew of two families who had children with stories
> >similar to Ian's but hadn't heard from them in a while so she
didn't
> >know how the children were doing. We were told, at the
conference,
> >that Ian's atypicalness could mean that he will be mildly
affected
> >or could mean that down the road he could have a severe episode
and
> >lose many of his abilities. Frankly, we are trying to prepare
> >ourselves for what may lie ahead. We would love to hear from
anyone
> >with any advice/suggestions.
> >Thank you so much for taking the time to read this.
> >Sincerely,
> >Paula Couture-Palmerino
> >
> >
> >
> >
> >
> >
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> >
> >
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