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.






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