[tri-med] Re: brain damage?

Julia,

Your experience sounds horrible. I am so sorry you went through it. I 
am not sure if I can help. But I will try.

I am a veterinarian who did my specialty training in internal medicine 
and neurology. I have lectured all over about refractory epilepsy in 
pets. I am pretty familiar with the mammalian brain physiology. AND, my 
oldest son, Reilly, who is 8, had severe seizures as a youngster 
(between 1 and 4). (Reilly does not have a genetic disorder, his sister 
does, but seizures and epilepsy in general are not limited to special 
kids, they are quite common.)

One thing I will say is that the mammalian brain is very resilient when 
it comes to seizures and the low oxygen associated with them. Even when 
there is a long seizure (meaning one lasting 30min or greater), brain 
damage and death only occur about 10% of the time. You say you gave 
Daniel CPR--do you mean you helped him to breathe after his seizure, or 
did he actually require chest compressions??? If you had to do chest 
compressions on him, that is much more concerning than if you had to 
stimulate him or give him extra 02 because he got a bit blue. Becoming 
a bit blue is really common with seizures, and usually the low oxygen 
is so short lived, no damage occurs.

My son had a generalized (grand mal) seizure that lasted 75 minutes. He 
was evacuated by helicopter to a Children's hospital an hour away. He 
was 14 months old at the time. He was in respiratory arrest--meaning 
not breathing at the time. He was intubated and the heli doc breathed 
for him for about and hour. His subsequent seizures were not as severe, 
but he did turn blue during every single one of them. When he turned 4, 
they just went away. YEA.

My son is 8 years old. in second grade and doing fine. His horrible 
seizures appear to have had no ill effects on him. He has a higher than 
normal chance of developing seizures again as a preteen (when most 
epilepsy shows up), but so far, so good. Developmentally, he is ahead 
of the curve.

It is difficult to impossible to predict if Daniel suffered any damage 
due to that horrible night. Because of his genetic disorder, his delays 
are somewhat expected, and I don't think you will find a doctor 
anywhere who could tell you which event (his chromosomal disorder or 
that night) has caused his delay. Having seen HUNDREDS of severe 
seizures, refractory to all therapy in animals and reading about the 
same in humans, I am always shocked at how much the brain can take and 
come out completely normal.

I know the feeling of replaying a horrible event over and over in your 
head. I can easily conjure up the emotions of our most severe seizure 
with Reilly. Just thinking about it gets my heart racing and my palms 
sweating. I talked to a lot of people about it for a long time before I 
could let go of some of the anger and horror of that night. I hope you 
have some supportive friends who can help you with that.

I don't know if this helps at all. But I hope so. Thinking of you..

Mimi (wife to Doug, Mommy to Reilly 8, Keegan 5 and Tierney T18 6months)
Chicago


On Nov 26, 2003, at 7:18 PM, Julia wrote:

>  Last night I watched Law and Order SVU and little girl was shook to 
> death.
> I couldn't stop thinking about how little it takes to cause brain 
> damage,
> which also made me think if any harm was done to my son. At age 4 mos 
> old he
> started having seizures, which caused him to stop breathing. Doctor 
> told me
> that over 45 seconds without breathing will cause brain damage. One 
> night
> seizures were really bad and we drove to ER. We spent 3 hours! in a 
> room
> waitnig for doctor. I cried and yell but was unheard. My son kept 
> going in
> and out of seizures. He was very relaxed when he was out of seizures 
> and
> suddenly he would go in again.
>
> On today's show Strong Medicine there was a little girl who had 
> seizures and
> treatment was immidiate to her. Now, could that night actually cause 
> some
> damage to my son's development? Doctors told me that its not possible.
>
> I don't remember everything, taking in consideration that that night
> happened 4 years ago but one thing I know, my son should have had 
> immidiate
> care and not keeping us in the waiting room for 3 hours. In addition, 
> that
> night was so stressfull that I can't even recall how many times me and 
> my
> husband gave CPR. I can't recall how long my son was in the seizures 
> either.
>
> Sorry for a long letter but what your opinion on this situation. I 
> need to
> mention that my son is about 40% "typical" development and doctor says 
> that
> his genetic (partial trisomy 19q) caused slow development. In argument,
> there is no kids with similar conditions, so they can't possibly know 
> what
> this condition would cause. Pediatrician did say that it is 
> unacceptable
> that ER kept little kid waiting for that long esp with seizures but 
> nothing
> was done since. Are there tests that we can do to check little one's 
> damage?
>
> Thank you for reading,
>
> Julia, mom of 5yo Daniel (partial trisomy 19q)
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>

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

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