Hi Karen,
Thank you so much for sharing that information. Unfortunately, late
yesterday and this morning, we started seeing signs of dystonia (his
elbow would suddenly jump up and then go back down). He also appears
week on his right side today, he'll be running and then suddenly he
dips, but doesn't fall. The only thing that we know that sets him
off is a bang to the head, but it doesn't always set him off (he's
had plenty of falls and a couple other concussions with no episodes
following). However, he is definately starting with a cold so
perhaps that is the trigger for this round. Did your daughter
develop more triggers as she got older or were her triggers pretty
consistent from the beginning? We have a protective helmet for Ian,
but he literally wiggles right out of it. It has been very
frustrating getting him to wear it, but in light of his dips, I'm
afraid we're gonna have to think of something to make him keep it on
(if possible).
Thank you again for sharing.
Best,
Paula

--- In afha@yahoogroups.com, popcornkcv@a... wrote:
>
> Hi Paula
>
> I am glad your are asking questions to this group and hope you can
find some
> more answers.
>
> My daughter is 6yrs now and was diagnosed at 2yrs with AHC. 2
yrs later,
> seizures dx was added/confirmed as well as AHC. She has done
well and is
> somewhat atypical also but doesn't fall into the same episodes as
your child. She
> has a mild developmental delay and still had significant speech
articulation
> issues. She does talk up a storm but it is hard to understand
her. Most of
> her episodes are triggered by lights, outdoors, over stimulation
or excitement
> and not as much as before-colds. In fact, she has more problems
when given
> an antibiotic ( especially coming off the antibiotic) for a
sinus/ear
> infection then from the cold itself.
>
> Hope you get some more information soon.
>
> karen venti
>
>
>
>
>
> [Non-text portions of this message have been removed]
>