Greetings Nancy,
Thank you so much for sharing! I am so sorry to learn of Cameron's
many disorders. My heart goes out to you and your family. I am once
again amazed (as I was at the conference) at the strength and
perserverance that you and many others show when dealing with this
illness (yes, I realize there really is no other choice). The
children are definately our heroes, but so are the parents,
grandparents and other caregivers! I love the idea of a journal, I
think that will be a great asset! Thank you so much!
Best,
Paula


--- In afha@yahoogroups.com, "Nancy Barrett" <arthur.barrett@v...>
wrote:
>
> 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
>
>
>
>
>
>
> Send a mail to the AHC community :
> Send a mail : afha@yahoogroups.com
> Subscribe : afha-subscribe@yahoogroups.com
> unsubscribe : afha-unsubscribe@yahoogroups.com
> Owner of the list : afha-owner@yahoogroups.com
>
> Link to the URL :
> http://groups.yahoo.com/group/afha
> AHC Website :
> http://www.afha.org
>
>
>
>
> SPONSORED LINKS
>
>
> Health
> <http://groups.yahoo.com/gads?
t=ms&k=Health+and+wellness&w1=Health+and+welln
>
ess&w2=Health+wellness+product&w3=Health+and+wellness+program&w4=Diet
+fitnes
>
s+health+nutrition+wellness&w5=Business+health+wellness&w6=Womens+hea
lth+and
> +wellness&c=6&s=193&.sig=PNRLSHFaTqyXp1obv2v4Rw> and wellness
>
> Health
> <http://groups.yahoo.com/gads?
t=ms&k=Health+wellness+product&w1=Health+and+w
>
ellness&w2=Health+wellness+product&w3=Health+and+wellness+program&w4=
Diet+fi
>
tness+health+nutrition+wellness&w5=Business+health+wellness&w6=Womens
+health
> +and+wellness&c=6&s=193&.sig=AFqS_tXnPnpCqwpKNebdSg> wellness
product
>
> Health
> <http://groups.yahoo.com/gads?
t=ms&k=Health+and+wellness+program&w1=Health+a
>
nd+wellness&w2=Health+wellness+product&w3=Health+and+wellness+program
&w4=Die
>
t+fitness+health+nutrition+wellness&w5=Business+health+wellness&w6=Wo
mens+he
> alth+and+wellness&c=6&s=193&.sig=BdigZOYgdpxf9YZh9fklUA> and
wellness
> program
>
>
> Diet
> <http://groups.yahoo.com/gads?
t=ms&k=Diet+fitness+health+nutrition+wellness&
>
w1=Health+and+wellness&w2=Health+wellness+product&w3=Health+and+welln
ess+pro
>
gram&w4=Diet+fitness+health+nutrition+wellness&w5=Business+health+wel
lness&w
>
6=Womens+health+and+wellness&c=6&s=193&.sig=f7gxQtotiuCxOWOqpDkACg>
fitness
> health nutrition wellness
>
> Business
> <http://groups.yahoo.com/gads?
t=ms&k=Business+health+wellness&w1=Health+and+
>
wellness&w2=Health+wellness+product&w3=Health+and+wellness+program&w4
=Diet+f
>
itness+health+nutrition+wellness&w5=Business+health+wellness&w6=Women
s+healt
> h+and+wellness&c=6&s=193&.sig=A_YEjl6nHR8XON05FHgkuA> health
wellness
>
> Womens
> <http://groups.yahoo.com/gads?
t=ms&k=Womens+health+and+wellness&w1=Health+an
>
d+wellness&w2=Health+wellness+product&w3=Health+and+wellness+program&
w4=Diet
>
+fitness+health+nutrition+wellness&w5=Business+health+wellness&w6=Wom
ens+hea
> lth+and+wellness&c=6&s=193&.sig=JpT9ejkuDwKyEqyBnGDFnw> health
and wellness
>
>
>
>
> _____
>
> YAHOO! GROUPS LINKS
>
>
>
> * Visit your group "afha
<http://groups.yahoo.com/group/afha> " on
> the web.
>
> * To unsubscribe from this group, send an email to:
> afha-unsubscribe@yahoogroups.com
> <mailto:afha-unsubscribe@yahoogroups.com?subject=Unsubscribe>
>
> * Your use of Yahoo! Groups is subject to the Yahoo!
> <http://docs.yahoo.com/info/terms/> Terms of Service.
>
>
>
> _____
>
>
>
> [Non-text portions of this message have been removed]
>