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Neurology (Expert Forum)
Possible Seizures??
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Possible Seizures??
by mom2five, Apr 10, 2001 12:00AM
I'm writing concerning my child who is a 3 year old little girl.
She was born with a two vessel umbilical cord and a small vaginal
cyst.....I'm not sure that any one of these things makes any
difference but I feel like it's important to see the big
picture.
Nine days after her birth she had her first "episode". She
continued to breathe normally but for about a minute broke
out in a cold sweat, was clammy white and then went completely
limp in my arms. After all that we had been through with her
birth I rushed her to her Dr. thinking that something was
terribly wrong. Her Dr. told me that her stomach was probably
upset and that she would be fine. That type of episode happened for the next two years averaging about 1 a year until this year.
We've had it happen 3 times since Oct. The neurologist is
hesitant to diagnose her with a seizure disorder because she
always turns so clammy.
We've had the following tests done.
Normal EEG, Normal EKG, Normal MRI. We were fortunate in that
one of these episodes happened in the Dr.'s office. They drew
a prolactin level that came back at 28 and was back a day later
to 8.
The following things always happen with these episodes.
She always comes to me saying that her tummy is hurting. One
time I didn't pick her up and her head slumped over to one
side, even though she was still standing she turned clammy and
then started going off to sleep. Our latest episode was Saturday
she came to me saying her stomach was hurting. I asked her if
she could tell me her name, she said 3. I picked her up as
she was getting clammy. The episode seemed to last about 1 min.
and then as always she went off to sleep. This time I tried to
wake her. She began to vomit and complain that her body around her sternum was hurting. The thing that was different this
time was that her color didn't return to normal very quickly.
She stayed this color for a good 45 minutes. The Dr. told
us she could go ahead and put her on Tegrotol (sp?) but my
husband and are not sure because she is also saying that she's
not convinced that these are seizures.
Are their questions that we should be asking?
Are we wrong to refuse medicine at this time?
Are there things we should be asking for that we're not?
Any advice would be appreciated.
Thanks,
Tracy
She was born with a two vessel umbilical cord and a small vaginal
cyst.....I'm not sure that any one of these things makes any
difference but I feel like it's important to see the big
picture.
Nine days after her birth she had her first "episode". She
continued to breathe normally but for about a minute broke
out in a cold sweat, was clammy white and then went completely
limp in my arms. After all that we had been through with her
birth I rushed her to her Dr. thinking that something was
terribly wrong. Her Dr. told me that her stomach was probably
upset and that she would be fine. That type of episode happened for the next two years averaging about 1 a year until this year.
We've had it happen 3 times since Oct. The neurologist is
hesitant to diagnose her with a seizure disorder because she
always turns so clammy.
We've had the following tests done.
Normal EEG, Normal EKG, Normal MRI. We were fortunate in that
one of these episodes happened in the Dr.'s office. They drew
a prolactin level that came back at 28 and was back a day later
to 8.
The following things always happen with these episodes.
She always comes to me saying that her tummy is hurting. One
time I didn't pick her up and her head slumped over to one
side, even though she was still standing she turned clammy and
then started going off to sleep. Our latest episode was Saturday
she came to me saying her stomach was hurting. I asked her if
she could tell me her name, she said 3. I picked her up as
she was getting clammy. The episode seemed to last about 1 min.
and then as always she went off to sleep. This time I tried to
wake her. She began to vomit and complain that her body around her sternum was hurting. The thing that was different this
time was that her color didn't return to normal very quickly.
She stayed this color for a good 45 minutes. The Dr. told
us she could go ahead and put her on Tegrotol (sp?) but my
husband and are not sure because she is also saying that she's
not convinced that these are seizures.
Are their questions that we should be asking?
Are we wrong to refuse medicine at this time?
Are there things we should be asking for that we're not?
Any advice would be appreciated.
Thanks,
Tracy
Doctor's Answer
by CCF Neuro[P]-M.D.-RPS, Apr 10, 2001 12:00AM
Dear Tracy:
I am sorry to hear about your daughter. You didn't tell me much about the birth process, "after all we been through with her birth" but I will assume that she is a normal little girl, developmental milestones have been met on time, no family history of epilepsy, no chronic illnesses, etc. Does she have reflux? Is there a family history of breath holding spells? Is there a family history of migraine headaches?
It is difficult to tell you much over the internet. The normal EEG and MRI are good signs. It sounds like your daughter has infrequent bouts of an autonomic dysfunction, akin to breath holding spells. When the sympathetic/parasympathic system is really activiated we can get cold and clammy, have a rise in prolactin (sympathetic system activates the pituitary-adrenal axis) and change in color. If in doubt then I would try a sleep deprived EEG, but likely this will be normal. I would bet on the dysautonomic breath-holding like episode.
Sincerely,
CCF Neuro MD
I am sorry to hear about your daughter. You didn't tell me much about the birth process, "after all we been through with her birth" but I will assume that she is a normal little girl, developmental milestones have been met on time, no family history of epilepsy, no chronic illnesses, etc. Does she have reflux? Is there a family history of breath holding spells? Is there a family history of migraine headaches?
It is difficult to tell you much over the internet. The normal EEG and MRI are good signs. It sounds like your daughter has infrequent bouts of an autonomic dysfunction, akin to breath holding spells. When the sympathetic/parasympathic system is really activiated we can get cold and clammy, have a rise in prolactin (sympathetic system activates the pituitary-adrenal axis) and change in color. If in doubt then I would try a sleep deprived EEG, but likely this will be normal. I would bet on the dysautonomic breath-holding like episode.
Sincerely,
CCF Neuro MD
She is definitely a normal little girl with the exception of
these episodes.
I would like to respond to a couple of the comments that you
made and see if you can give me any other suggestions.
I know that she's not holding her breath. When she was an
infant, I watched especially for this. This is one of the
first things that I looked for because of the color change.
I did have to have and emergency C-section with her. Unknown
to us before birth, she had a 2 vessel umbilical cord
and she became very stressed during the delivery process.
At birth, her first apgar was low but it came up for the
second. She only weighed 5lbs and 15oz. (My other children
have been around 9lbs.)
There is a family history of epilepsy in my husbands family. There
are several women who have had it but none of their seizures
resemble this. I do however see resemblances to her activity
in a movie about seizures that the Dr. gave us to watch.
I can tell you that each of these episodes have followed
a night of disturbed sleep (the last, another child in our
house wasn't feeling well and we were up taking care of her),
it usually is not a result of her naps in the daytime being
disturbed. I do agree with you in that I'm not sure if we
would be able to catch them with a sleep deprived EEG just
because of their infrequency.
So what are your thoughts on beginning meds before a positive
diagnosis? Are my husband and I being unreasonable about this?
Should we be agressive in finding out what is going on since
our Dr. is still thinking it could be a cardiac problem?
Thanks again for your time,
Tracy
Good luck.
The only thing that doesn't fit the picture is the prolactin level and I know nothing about it. With what the doctor here said about the breath-holding spells, it is something I would want to check out first because he's been a blessing to me in helping with my son and I would bank on whatever he said. I just wanted to tell you about my son just as something else for you to consider.
I pray you get a diagnosis soon.
I'm an adult, but have had similiar symptoms as "Mom" describes in her daughter. Just wanted to mention that I find the doctor's response here to be very logical and most likely you should follow through with his advice. However, I needed to let you know that it is common for prolactin levels to elevate just after a seizure. So, "Katie", your info about seizures seems to be something that is right on target.... AND the prolactin issue would indeed fit into the picture.
very troubling thing for my husband and I to deal with.
After reading the advice of the Dr., I've decided to take things
a little further than I have before. I called my ped. and
asked for a referral to a 2nd ped. neurologist. The only
explanation I could get for the first wanting to go ahead
and put her on meds is that it could possibly make our lives
a little easier? She still says she doesn't think that it's
epilepsy, nor will she agree to do any further testing.
When I spoke again with my ped. she agreed to send me to another
neurologist and this time also to a cardiologist (just to be
sure it's not cardiac related).
It's so hard to watch your child go through something like this.
This last time she stayed pale and clammy so long afterward,
and all of the vomiting really scared us. I hope that we
get a diagnosis soon.
Thanks again,
Tracy
If your daughter has epilepsy, and it certainly sounds as though she does, she will be in a lot of good company.
Warm regards.