Conference moira::parenting_v3

    Well, I have a call in to the pediatrician but I thought I'd try to get
    some ideas/info here.
    
    I have a 10 month old daughter who has some developmental
    delay...mainly gross motor...possibly cp. Occasionally, I notice her
    staring into space. I try to figure out what she is looking at but
    can't tell. She comes back quickly.
    
    This morning, right after I rinsed her hair (poured water over head),
    I saw her eyelids flutter and her eyes rolled up. 
    
    Any experience ? What sort of tests to expect ?
    Do kids do this when their faces get wet ?

    Are you asking if what you witnessed was a seizure?  From what I read
    it might have been, but then again you are right it may have been a
    reaction to the water.  Has it ever happened before?
    
    Tests?  well most tests for neuro defects are generally nonpainful, and
    unless the kid is terrified by doctors, nurses and technitions, they
    generally do OK.  
    
    Usually the first few tests are simple and painles, an ultrasound of
    the skull, an MRI, maybe a cat scan, and (I can't remember the name of
    it-sorry) the thing where they attached dozens of electrodes-with a
    glue type thing- to the skul.  Sort of like an Electrocardiogram for
    the brain.  This test by the way is usualy done under sedation or
    during the child's normal sleep period.  By the way many hospitals are
    now scheduling these for the middle of the night just for this reason!
    
    Please keep us posted, and I'll keep you in my thoughts!
    Lyn
    (the emt and mom)
    

    Lyn -
    
    You're thinking of an EEG (electroencephalogram) which tracks the
    brain waves.
    
    Mary

    	My son 2.5 years old starting having seizures in November.  There
    are lots of different types of seizures and each person can act
    differently with each type. 
    	I started keeping a very close eye on Shayne and everytime he would 
    seem to go out of it I kept a log with information like;  How long he 
    would go out for (he didn't pass out, just his eyes were fixed and he 
    would not respond to me.)  At first he would have one seizure and be
    out anywhere from 1-5 minutes, later on he started having multiple
    seizures and I would keep track of those also, I would look for 
    physical things too, like he would go limp on one or both sides.  
    	After these seizures Shayne would also become very tired and would 
    sleep for hours, it usually takes him a couple of days to get back to 
    himself.
    	The first test he had was a cat-scan, which looks for things like 
    blood clots or other head injuries.  Then an MRI which can do intricate 
    scans for other damage, after both these tests came back normal we went 
    to the EEG.(the test Lynn couldn't remember the name for.)
    	I must say of all the tests this was the most traumatic for Shayne, 
    none of them are painful, but the procedure for EEG's is not the most 
    pleasant.   	
    	According to our neurologist EEG's are best when done within 48 hours 
    of a seizure, this is when a seizure disorder will most likely still show
    up on the test. 
    	The best scenario is for the child to be sedated, but Shayne got
    wired from the medication and so I spent ALOT of energy holding him
    down and finally he would cry himself to sleep.  
    	They glued 21 probes to various spots on his head, they then start
    the machine (sorry I can't remember the names, but can get them from 
    my notes at home if anyone is interested) and measure his brainwaves
    and look for abnormalities in them.  
    	After 3 separate EEG's we still haven't come up with any answers 
    as to why he is having seizures.  They can definately tell us that it 
    is not Epilepsy, and he DOES have a seizure disorder but don't know 
    what is causing it. 
    	He is on an anti-seizure medication (Tegretol) and seems to be 
    doing fine with it.  The doctor's do keep track of his tegretol blood
    level and adjust his dosage accordingly.
    	If you feel that your daughter is having seizures, and since she 
    does have some developmental delays (Shayne also is delayed), I would 
    suggest that you see a Pediatric neurologist.  Shayne's neurologist 
    specializes in child neurology and child development.
    		 

Just a quick note on EEGs.  Although the EEG itself is not at all painful,
the preparation can be a little painful.  They use an abrasive gunk on the
spots that they attach the probes.  It's a little like rubbing sand in your
scalp.  Not *really* painful, but the spot can get a little raw and sometimes
it's more than just annoying.

       Carol

    Carol, 
    	   The gunk they attach the probes with, is the worst part of the 
    EEG.  The smell reminds me of super glue and I usually feel nauseated
    (sp?) while they do the test since I am holding Shayne and his head is 
    right in my face.  
    	The technician that does Shayne's test usually applies a solution 
    afterwards that is supposed to soften and help the gunk come off easier
    we usually take about 4 to 5 shampoos before it comes off his scalp and 
    out of his hair completely. 
    	I would also like to thank whoever it was that redid this note to 
    include the information on the notesfile.  Since Shayne's seizures
    started I have been looking for all the information possible and am 
    looking forward to the support and information I know I will get in it. 
    
    Thanks,
    Malinda

    Malinda, please keep up posted when you have results.  Until then I'll
    just say a little prayer that things will work out all right.
    
    Thanks for those who remembered EEG, I just drew a blank-guess it's too
    much DECwrite lately!
    
    Oh and I seem to recall that applying baby oil or mineral oil will help
    get the EEG glue off pretty easily.
    
    Lyn

    
    I also have a son (3 yrs. now) that had seizures (mostly petite mal)
    from about 9mos. to about a year ago. One (grand mal) put him in
    Mass Medical center and after having a CAT scan, was diagnosed as
    having Microcephaly. He is developmentally delayed and currently
    in EI (Early Intervention). He will be attending cooperative school
    this summer.
    One thing we craved (and still do) was MORE INFORMATION about what
    the delay (and seizures) were caused by. After repeatedly hearing
    that "nobody can predict the amount of progress....", we were just
    glad to have people to talk to that had similar circumstances.
    If you have a similar situation and would like to talk more, send
    mail and I'd be glad to chat.
    
    Mike
    

    Some people may miss the short note tacked onto the end of the base
    note.  There is a notes file for those who have a seizure disorder or
    are close to someone who does.  Information/membership may be had by
    contacting BEMIS::DIMASE.  Your inquiry will be kept confidential.

					Topher

A couple replies ago it was mentioned that the child had landed in (U?) Mass 
Medical, and wanted to learn more about seizures.

The Medical school library at the UMMC is open to the public.  I have spent some
time there reading on various subjects, from AJ's many different problems to
a little known condition my husband was diagnosed with, while I was pregnant
with AJ.  The people in the library are extremely helpful.  They carry many
more book with more in-depth information than could ever be found in a public
library.

Lyn

    
    Just to help set your expectations, you may never know what caused your
    child's disability. In our group about half the children have been
    diagnosed to that level, the rest of us do not know. In the beginning
    this bothered me a lot, but now I find my energies are best spent
    helping my child through EI.
    
    Chris

    Thanks for the info and support. I've almost convinced myself that what
    I saw was the response to water dripping in her eyes but...the EEG is
    in a few weeks.
    
    Please keep us in your prayers. I need for things to be ok for her.
    

    Moderators: 
    I looked for a note on this subject, but could not find anything.  If
    there is an appropriate topic, then please feel free to move.
    
    
    My 5 year old daughter had some kind of seizure.   It was really weird
    because she had called me at 5:30am and was fine.  Since her
    grandparents are visiting, we were going to leave her with them for the
    day. Right before we left to go to work, my husband checked up on her. 
    She appeared to be awake, but when he called her there was no response.
    Her pillow had a pool of clear saliva on it.  He picked her up and she
    still didn't respond.  It was like she was in a coma.  Her eyes were
    wide and off to the side.  We would wave our hands before her eyes,
    talk to her and press hard on her hands and there would be no response. 
    Her teeth were clenched tight and she would have an occaisional tear
    fall from her eye.  We took her to the hospital and they got her on an
    IV and took blood.  She did kind of fight these procedures but there
    was never any voice response.  Although when they took the blood, she
    did call out for Mommy once.  They decided to try and do a cat scan on
    her and since she was rocking they decided to sedate her.  They gave
    her 4 mg of valium and it brought her out of the seizure.  She started
    talking to the nurses saying "I don't like that, I  dont want that."  
    They came and got my husband and when he walked in there, she
    practically jumped into his arms and clung to him like a leach.   He
    brought her back downstairs and the hospital observed her for about an
    hour, and then we took her to her pediatrician.   She is scheduled for
    an EEG and possibly an MRI(?) and has an appointment with a
    neurologist. We took her home and the valium(she had been fighting it
    the whole time) kicked in and she slept the afternoon.   When she woke
    up, she was a little drowsy, but by evening, it was like nothing had
    ever happened.  When we checked her this morning she was sound asleep. 
    We left her with her grandparents and she seems just like herself.  The
    doctor gave a tentative diagnosis of "PARTIAL COMPLEX SEIZURE".  This
    is just a guess.  This could be an isolted incident, but then again she
    could continue to have them.  When where, why or how long is
    undertermined.  The doctor mentioned that this seizure is "NOT" a life
    threatening seizure.  It does not affect the ability to breathe or the
    heart to beat, it just affects the consciousness of the patient. 
    Needless to say it was the most awful experience that I have ever
    experienced with my  daughter and hope it never happens again.

    I was hoping that some one here could give me some information and/or
    resources for information on seizures.  Has anyone in here had an
    experience like this and could give me some ideas on how to handle it.

     Thanks for any info.
       Sarah 
    

    
    Sarah,
    
    I have no information or experience with seizures, but you definitely
    have my sympathy and support.   I certainly hope that Jessica's seizure
    is an isolated incident.
    
    You're in my thoughts,
    Carol

    Our son Tobias (now 6) had a seizure too, before entering
    kindergarten.  That was maybe 18 months ago.
    
    He's not had another one since.  Apparently it's reasonably
    common for children to have one seizure and then never any others.
    At least that's what his pediatrician told us.  And some of our
    friends have had similar experiences.  A friend of mine said her
    daughter had several around puberty and then never any others.
    
    I know this doesn't relieve the anxiety you get when your child has
    one.  But it did help assure us that it wasn't anything particularily
    strange and rare.
    
    

    Re: 656.1, the EEG was normal. Thank God.
    
    The neurologist did not rule out mild seizure activity that might not
    show up but, for now at least, I am leaving this one behind.
    
    I did find out in the process that it is possible to secure the
    electrodes with a water based paste. They used this on half my
    daughter's head after I put her to sleep. They used that aweful glue on
    the first half and she screamed through it; she also screamed through
    attempts to remove it using nail polish remover.
    
    Thanks for the info and the support.