Hi Paula. Welcome and thanks for telling us about Ian.



My name is Nancy and I am the grandmother to Cameron who is 7-years-old and
has AHC. Cameron's mom, Cameron, and I were at the Boston conference in
July. What an intense experience! What we noticed was that Cam seems more
adversely affected than most, since he is completely non-verbal and unable
to walk without help. AHC symptoms do vary from one person to another and a
lot of times there are accompanying disorders, just to keep things
confusing. We just figure that since AHC is such a rare disorder, whatever
symptom we see should be considered typical! :-) The clincher for Cam's
neurological team was that sleep relieved the symptoms.



Cameron takes clonazepam for seizures and a lot of supplements to treat his
complex 3 mitochondrial disorder and his under-active thyroid, but his most
important medications are the flunarazine for AHC and the Diastat as needed
for severe "episodes." What a difference it made to his quality of life
when we started those! We keep a pretty detailed log which includes
whatever we suspect may have triggered an episode. While fatigue and stress
cause him to shut down and be paralyzed on one side or the other, it seems
severe episodes are cyclical and he's just going to have a hard time every 4
weeks or so no matter what.



Like you, we don't know what the future holds. Thank God we get there just
one day at a time. Good luck with Ian and your new baby!



Nancy







_____

From: afha@yahoogroups.com [mailto:afha@yahoogroups.com] On Behalf Of
pgpalmerino
Sent: Sunday, January 01, 2006 4:12 PM
To: afha@yahoogroups.com
Subject: [ahc] New Member looking for answers



Greetings 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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