Wow. I am beginning to see just how fortunate Ian (and we ) are in
regards to triggers, medications and other illnesses.
Fortunately, the only trigger at this point seems to be the head
bang. We have wondered as has his pedi-neurologist and pediatrician
whether or not the episodes preceded the bang. However, Ian has
banged his head numerous times, despite the fact that his father and
I would be within an arm's reach of him. He scales flat surfaces
quite easily and since he recovered his gross motor skills, quite
quickly. His three therapists (physical, occupational, and speech)
are amazed at how quick he is. One of them pointed out that he
is "fearless" and that label really fits. Fortunately, as he has
gotten older he seems to understand that some of his behaviors cause
more "ouches" than others.
I am going to start a journal and add "colds" as a possible trigger.
I don't think excitement does it at this point because we were able
to celebrate on the 24th and the 25th with both sides of our huge
families without any incident. In fact, both Ian and his baby
brother, tolerated all the relatives and day long activities quite
well. It wasn't until the 27th that we sensed something might not be
right.
I hadn't thought about returning to his behavioral specialist
because of all the evals that the therapists and the neurologist do.
That is definately a great idea! Ian has a specialist because he was
born 9 weeks premature and it is standard procedure to have premies
follow up with one. Ian last saw her at about a year old and we were
told that a follow up wasn't necessary.
Ian will be starting preschool in March. I have been to a PPT and
found the staff to be extremely kind and helpful. They want to know
as much as possible about the illness so I gave them copies of the
articles and of the plans that were provided to us at the
conference. Now that Ian is having episodes more frequently, I think
we are going to have to revise some things and I will have to tell
them what to look for regarding an episode. I also think it is time
to brush up on what to do in case of a seizure. I realize that it
may not happen, but I'd rather be prepared.
I am so glad that I joined this list. I have learned so much already
and now feel that that there are some things that I can do to
help/prepare. Although we have two very large families, (My side
alone has 14 nephews and nieces and 9 great nephews and nieces!) Ian
is the first to have such an illness. Both our families care and are
very concerned, but I just don't think that they get it, and frankly
I really can't find fault with that because it is not an easy thing
to understand.
Thank you so much!
Best,
Paula
--- In afha@yahoogroups.com, popcornkcv@a... wrote:
>
> When Addie was 1yr-2yr she had the eye deviations and some
limpness in an
> arm (on same side as eye deviations. She had some weakness in leg
but not
> much. Sometimes she actually walked in a circle like a dog
chasing its tail.
> That was very scary. Colds definitely brought on episodes but so
did any
> stimulation. If she saw a cousin or anyone came over the house
she would do a
> split and couldn't get up.
>
> When she was put on the flunarazine at 2yrs it significantly
changed any of
> the intermittent episodes she had of weakness or mild
dystonia/eye
> deviations. They pretty much went away. However, she continued
to have life
> threatening seizures with total body arching and jerking and
unconsciousness. When
> she was about 4yrs old she was started on Keppra, an anti seizure
med, that
> made a huge improvement in these seizures. She no longer had 4
hour seizures
> with vomiting and oxygen deprivation. She still has seizures
(not completely
> controlled) but they tend to be shorter (20min-45min) and usually
react
> quickly to rectal valium. We control as best we can, her
exposure to provoking
> factors which means her lifestyle is restrictive. She doesn't go
outside much
> or for any length of time. She can take it better without the
interaction of
> other kids (she gets too excited). We stay away from fluorescent
lights (and
> have actually had the school change old fluorescent with the
flicker b/c she
> seizes). She wears sunglasses or visor in car and in classrooms
and this
> helps. She will complain about sunlight and wind. Loves the
water but it
> makes her seize. Used to spend all holidays in the emergency
room in seizures.
> Now much better and in fact, we convinced Santa to come to the
house this
> year for her first visit with Santa! before the boys in her class
tell her
> otherwise!
>
>
> Do you think Ian's episodes may be preceding the head banging and
that is
> why he falls? I do remember once that Addie hit her head and did
have a
> seizure but she had many falls since and not a similar event.
>
>
> One thing I've learned over time is nothing takes away your
concerns but you
> will get to know all the idiosyncrasies of your child. Stick by
your
> instincts and take notes especially early on. The families on
this sight are very
> helpful. They helped me understand when my daughter's attacks
seemed more
> seizure like and less AHC like. This has always been an ongoing
question of
> mine. They also help with feeding questions, toileting issues,
as well as
> behaviors and meds they might have tried.
>
> the visits get less, the info exchange seems more redundant can be
very
> frustrating over time working with your doctors when they don't
have the answers.
> It helps to put together a good team as soon as you can with a
pedi neuro
> who is willing to work the AHC side ( if this turns out to be the
right
> diagnosis), a developmental pediatrician to help guide you
through development and
> anything you may address with school so your child can be a
happy,
> interactive student when the time is right. These people are
around and will help you
> and your family. And so will this group. Also don't forget, as
we all have,
> to take care of yourself. This is all very exhausting mentally
and
> physically.
>
> Keep asking questions.
>
> Karen V.
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>