[tri-med] Re: 5 month old Trisomy 13 baby

----- Original Message -----
From: "jonathan dixon"
>> I recently saw a neurologist but she just gave him some med for infantile
spasms and sent me on my way.

Did they see seizure activity on an EEG? or are they assuming that they are
seizures based on the behaviour and the Trisomy combination??

I ask because we first suspected that Alex was having seizures when these
events happened (they didn't only happen in the car but when he was at home,
when he was asleep, in fact anywhere any time). But anytime they did an EEG
(and he had at least 6 in the first 6 months) there was no indication of any
seizure activity. As a result he was not medicated for seizures (besides the
drug of choice for babies is usually phenobarb and I HATE phenobarb with a
passion)

As it was it turned out that they weren't seizures (he finally had an
episode when he was actually having an EEG - nothing more conclusive than
that!!) What it was was a combination of central and obstructive apneas.
These can lead to seizures but they are caused by the apneas not the other
way around.

As I said in a previous post - fixed the reflux and treated the apneas and
the problem was greatly reduced.............. As I also said in another mail
I am convinced that Alex had a tonic clonic seizure last week - but again I
think its probably secondary to other problems that he has at the moment
rather than the primary issue.

I also relate to having to be Alex's doctor. Most of us on here have had to
earn our own honarary medical degrees and most of the time its no fun!! I am
lucky in that we now have a wonderful pediatrician who supports us in anyway
that he can. But the reality is that very few doctors have any experience
with children who have a trisomy condition and so they too are looking and
learning for answers. That was the main reason for setting up the list - to
share our common experiences and learn from each other........

A rich child often sits in a poor mother's lap.
  -- Danish Proverb

Keep Looking for Rainbows!!!
Karen, Mum to Alex (8, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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