Conference moira::parenting

I'm interested, too, Scott.  Our son Justin, now 18 months, has started having
regular convulsions.  His first one was 5 (6?) months ago, with me being the
only adult around.  He had slammed the toilet lid on his hand, held his
breath while crying, and then turned slate blue and went into convulsions.
His eyes rulled up and to the side, and his arms were bent upward and shaking
forward and back.  CPR training didn't do a *bit* of good.  I called 911 and
an ambulance came.  That convulsion lasted 7 minutes.

They did a catscan, which showed nothing.  Our pediatrician said to expect
other convulsions, and that he would grow out of it by the time he was 5 years
old.  An MRI we did a couple of weeks ago also came out fine, btw.

Five months passed after that first convulsion and he hadn't had another one.
Then another baby bit Justin on the fingers, and he had one that lasted about 
a minute.  We explained to daycare what we had been taught by our doctor:  

  Watch his fingernail beds while he is convulsing. If they turn blue or if the
  convulsion lasts 10 minutes, then call 911, but otherwise just keep him safe
  and wait it out.  

In the last 3 weeks or so, he has had at least 4 more convulsions that I can
think of.  All but one were caused by an injury to his hand or fingers.  The
other one's cause is unknown because no one was looking at him just then.  All
of the other convulsions have lasted only 15 seconds to 1 minute. 

Shellie saw an ad for a group of parents whose kids had seizures.  She called
them and they turned out to be an epilepsy group (Epilepsy Foundation maybe?).
They say that the definition of epilepsy is 2 or more seizures.  Our doctor
says that he does not have epilepsy.  I don't know who to believe.

     Carol

	Epilepsy is caused by irregular brain waves.  Generally, it is
	characterized by convulsions however, I can tell you of two
	cases in my family where it didn't.  My brother and
	my cousin both had/have epilepsy.  My brothers seizures occured
	when he was sleeping... he would wake up screaming and at
	first we thought it was nightmares... he was not having convulsions
	but something wierd was going wrong and it scared him (hence the 
	screaming).  It eventually turned out to be epilepsy.  He grew 
	out of his seizures which is possible with epilepsy (some types 
	anyhow).  I don't remember much more than this since I was quite 
	young at the time and once he was on medication seizures stopped.  
	He stopped taking his medication voluntarily in his late teens and 
	hasn't had a seizure since.

	My cousin had some minor brain damage at birth which caused her
	irregular brain waves.  Her type of seizures basically involve her 
	going into a trance.  I knew another person with this type of 
	epilepsy and she could never have a drivers license because of it.
	My cousin now has a drivers license... she may have grown out of
	her epilepsy as well but I never asked.

	I'm no expert on epilepsy but if the doctor tells you it is not 
	epilepsy (which can be detected by a cat scan), then he is 
	probably correct.

	FYI... quite a stigma is put on a child with epilepsy since
	epilepsy typically does involve convulsions.  In many states,
	epileptics are not allowed to get a drivers license.  In
	schools, sometimes they are not allowed to participate in
	certain activities.  In addition, children can be very cruel
	if they know someone is an epileptic.  In the case of my brother, 
	my parents elected not to tell the school about his problem since his
	seizures never happened during waking hours.  I do think that
	the school should know though if the child is apt to have a
	seizure in school.

	Karen

    re : .1:
    Carol -- 
    Any chance Justin has had any vaccinations lately? My neighbor's
    daughter had some problems with convulsions when she was younger. She
    took her to a pediatric neurologist who said that the daughter had a
    particularly sensitive parasympathetic nervous system and the
    vaccinations would set it off. He said it would go away by age 4 or 5
    and it did. Same neighbor has a nearly two-year-old son who turns blue
    when he cries hard. After many heart checkups, they have decided that
    their is an abnormality, but it's not life-threatening and they just
    need to monitor him fairly regularly. 
    
    Hope this helps....
    Sue
    

    Carol,
    
    The Epilepsy Foundation here is quite supportive, and Justin doesn't
    have to have a diagnosed case of epilepsy for you not to need a support
    group of other parents that know what you are going through when
    seizures happen.  My best friend's sister was a member for many years.  
    
    My dad had siezures from his asthma which were quite frightening until
    you got used to it.  Then it was a matter of waiting for him to come
    back and his breathing to kick in again.  We were told it wasn't
    epilepsy as his brain waves didn't change, his eyes rolled back in
    his head and he would turn purple and lose consciousness for a few
    minutes.  It scared my entire family half to death when this would
    happen, as it almost looks like stroke or cardiac arrest.  
    
    FWIW, when the doctors finally got the allergies and asthma under
    control, the siezures became a thing of the past.  
    
    Meg

    I started to read .0 and the first thing that came to my mind was:
    
    "Gee, this is what happens to me when I have an insulin reaction."
    
    I am a diabetic and from what my husband has told me, the description
    of your child's "fit" is exactly what my husband told me happens when I
    am in a severe insulin reaction.
    
    You or someone else noted low blood sugar.  That's exactly what it is.
    I would have your child tested for hypoglycemia and diabetes.
    
    Gail
    
    

    My brothers son is 2 years old and was diagnosed with epilepsy.  after
    trying him on may medications - they had to resort to injections which
    finally stopped them. - keep a close watch and good luck 

I never did put an update in here on what we found helped with Justin's 
convulsions.

First of all, let me say that some doctors, perhaps most, don't call what
Justin has a convulsion.  I do.  In the worst cases (which happened twice,
once for 7 minutes and once for 16), he would become stiff, his arms would
shake, his eyes would be rolled back, and he would be really "out of it"
when it was "over".  He would be really calm, but not know where he was or
who was around (including his parents). 

As I believe I mentioned before, these times would be caused by an injury.
He would cry, he would hold his breath (unintentionally), and his eyes would
roll up, etc.  Usually it was quick, 15-30 seconds, and he wouldn't shake.
This happened at least once a week on the average.  If he was already injured,
particularly if it was a severe injury, which for him was a surgery, then
he would go into a breath-holding spell for emotional trauma as well.  He would
be very clingy after a surgery, and Shellie and I would take turns each day,
24 hours, holding him.  If we left even to go to the bathroom in the toilet in
the same room, he would often have one of these spells.

That's how we learned about oxygen.  

We were living in Colorado Springs, Colorado.  More than 6,000 feet above
sea level, it is even higher than Denver.  The higher the elevation, the
less oxygen is in the air.  When we were in the hospital after his many 
hospitalizations, we got a good idea of when he would be more likely to
go into a breath-holding spell.  That would be when we would attempt to
leave the room or when some medical professional would come in to check him
(which happened OFTEN).  When he was on oxygen we would increase the dosage
he was getting at these times, and even though he cried and held his breath,
he had gotten enough oxygen that he never went into a convulsion.  When he
wasn't on oxygen, or was on a "blow by", then we would make sure the oxygen
tube was in his face during those times, blowing right at him.  When we did
that, he didn't have convulsions/spells. 

We also noticed that he didn't have breath-holding spells when we were on
vacation, which was also usually at sea level.

Voil�.  We were planning to move to Massachusetts anyway.  Now that we have
moved, his breath-holding spells have gone from 1 a week to 1 in 3 months.
What a difference.

I hope this can help someone else.  Our doctors had never heard of it.

   Carol

    Carol,
    
    Reading this, I am beginning to get a better handle on what you and
    Shelli have been going through.
    
    It almost sounds like my dad's respiratory seizures.  He never had them
    when he was in the Hospital on oxygen which was when they would monitor
    him.  However, because of his severe allergies, moving to sea-level was
    never an option.  He had taken part in an experimental immune system
    enhancement program for surviving melonoma and the molds and grass
    pollens they shot into him are common at sea level, but not at 6K feet.  
    
    When he would get a coughing fit he would suddenly stop breathing, turn
    purple and his eyes would roll up.  He would fall out of a chair if he
    were sitting in one.  After a few minutes he would come around again,
    and never seem to know that anything had happened, except that he was
    horizontal instead of vertical.. 
    
    We lived for years in constant fear that the siezures would succeed in
    stopping his heart where the cancer wasn't succeeding.  having read
    what you have gone through, and having lived it I really am glad that
    your move to sea level is working.
    
    meg
    
    

When I re-read your previous note about your father I also noticed the
similarities.  It sounds like your father had the same thing, just a different
catalyst.

   Carol

    Carol,
    
    I talked to a friend who also had seizures which were aleiviated with
    oxygen.  It is interesting that , like Justin, hers seemed to start
    with some sort of pain.  Her (rather offbeat but interesting doctor)
    diagnosed this as hyper brady-kennins(sp), and figured she was
    essentially allergic to her own adrenelin.  Seems the brady-kennins
    have something to do with hystamine release and they would dump into
    her system when she was confronted with any allergin or painful event.  
    
    meg

    I'm glad you entered this note, Carol, as I meant to put this in
    here a few weeks back.
    
    A few weeks ago, on Dateline NBC, they had a story about some Hollywood
    producer and his 1-year-old son. The son had seizures and was diagnosed
    with epilepsy. They tried several types of anti-convulsion drugs, none
    of which worked. I guess they kept him pretty sedated too, which is
    pretty sad for a little kid. Then the parents heard of some program at
    Johns Hopkins which involved putting the kid on special high-fat (?!)
    diet. It worked. No drugs. The guy says his goal in life now is to make
    sure that people know that this help is available. Thought I'd help him
    a little by posting a note....
    Sue

    
    
      I've heard of the same diet myself on TV a few weeks ago. It was a
    very interesting show. The high fat diet is something that works out
    of roughly 90% of people that use it. To this day they aren't sure why.
    Many doctors knew not about it...Like a long lost remedie. And then
    other doctors would not believe it. The couple the previous noter 
    mentioned, actually started their own business and many doctors are
    now perscribing this type of treatment.
    
     -A