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

No we did not do an EEG mainly because I didn't want to drive 2 hours to have 
it done.   But ever since he was about 2 weeks old he has had this reflex 
action with his arms.  We thought that it was the normal scare reflex that an 
infant would normally have but it was getting worse and it was happening more 
and more frequently.  So my doctor had us visit with a neurologist and she saw 
him do it and said that it was infantile spasms.   But the ride to see her was 
so overwhelming for him so I chose not to do it again for the EEG.  So after 
everyones advice (Which I am so greatful for!) I talked to Daylins doctor today 
and I asked him if there was any where local that I could have an EEG done and 
he found a place.  So tomorrow I have an appointment!  And it will only take 
about 10 min. to drive there.  
The medicine they put him on was called Zonagram and it has taken some of the 
spasms away but he still has them.  Since he has been on that med. he has been 
a much happier baby though.  He smiles at us now and he is very vocal!
When he was first born the doctors told me he would go from an apnea spell.  So 
I stayed awake every night and watched him sleep and if I wasn't awake my 
husband was.  He never stopped breathing.  But one thing I noticed him do which 
I guess would be obstructive apnea. is he would look like he was breathing his 
body would still move but no air would be coming out.  And then a few seconds 
later he would gasp for air.  I was guessing that he had saliva in his throat 
or maybe it was positioning.  He doesn't breath well when sitting up in any 
kind of seat.  
My doctor is working on getting him some med that will help him digest his food 
faster.  We are not sure if he has reflux.  Sometimes I notice some milk come 
back up in his mouth after his feed but he is tube fed so it could be wrong 
positioning after a feed.  But after he eats he likes to cough and make himself 
throw up!  I know he doesn't do it on purpose but I get so frantic when he 
starts coughing after a feed.  My husband thinks I am funny because I start 
running for a towel even before anything happens.
Thanks for all of your advice!
Nancy
 Karen Schuler <karens@xxxxxxxxxxxxxxxx> wrote:
----- 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

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www.trisomyonline.org
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