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Seizure-like behavior UPDATE |
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Written by Lauren Snyder
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Monday, 08 March 2004 |
First off – Sheila, Joanna and Cathy – THANK YOU so very, very much
for responding to my post. I have been beside myself all weekend. I
was up all night Friday and drank up your words on Saturday
morning. I went to church on Sunday and couldn't stop crying. I've
just been so weepy. I haven't felt that way since my daughter was
very, very sick back in the NICU almost a year ago.
Just to update: Saturday morning I thought I was watching
her "twitch" sporadically, but my husband wasn't seeing it. It
definitely wasn't the same thing we saw the night before, but would
be alarming because she was up and playing around. I kept calling
the different Pediatricians on call throughout the weekend to
explain what happened and see what their opinion was (I talked to
three of them and my home health nurse). By Saturday night my own
pediatrician was the one on-call. When I told her what I thought
Brooke was doing (even though my husband couldn't really see) she
asked me to try to get something on video tape. She would be more
concerned if she were having this kind of activity "awake", as
opposed to going to sleep. We made an appointment to meet on Monday
(if we had tape or I felt we needed to come in) or to call with an
update of no more activity. Sunday we didn't really see anything,
but Sunday night she did it again (just two twitches- but
unmistakable) I went to get my husband to video tape. We taped for ½
hour – and nothing. But shortly after we stopped, she twitched and
my husband could see that she had done it again. By Monday morning,
she was visibly twitching regularly (1-2 twitches) and we got one on
video tape. So off we went to the Pediatrician's office with the
tape.
My Pediatrician was not sure about what she was seeing, but was
concerned by what she saw on the tape and that it was happening
while she was awake and playing. She was able to get us into a
Neurology appointment for this Friday.
So that's where we're at. We won't have any definitive answers until
after our visit with the Neurologist. At one point, we considered
that perhaps her Albuterol was causing the twitching. She's been on
at least a daily dose of Albuterol since October and was taking in
quite a bit within the last two weeks because of her upper
respiratory infection. Tremors (and even seizures) can be a side
effect of the drug. I hadn't realized that before. I haven't given
her any Albuterol since Saturday morning just in case that was/is
the cause. I don't plan on giving her any until at least the
Neurologist appointment and really I'm looking into switching to
something else. Miraculously she's hasn't really needed it. My
husband and I can't be sure, but it seems to us that Brooke is a
much happier/normal baby without it. That's so strange!? We are
stunned. My husband said to me this morning…well the good news is
that our little girl is happier and livelier…that bad news is that
she's twitching.
Well, I feel stronger emotionally today and much better prepared to
deal with reality however it shows up. I suspect that she is having
seizures. I hope not and of course I just want whatever it is to go
away. I had a lovely talk with my "oh so accomplished and
beautiful" SIL who found out 5 yrs ago that her "dizzy spells" were
in fact seizures from a head trauma she experienced in the 8th
grade. She reminded me that if they are seizures, with medication,
it didn't have to be an overwhelming, life-stopping event. She
helped put perspective in my "worse case scenario" thinking
pattern. Thank you so much for listening and responding to my post.
It has meant so much to me.
I'll post an update after the Neurology appointment.
Lauren
Mom to Brooke (ex- 26.5 wkr – now 11 mos actual; 8 mos adjusted)
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Last Updated ( Saturday, 25 March 2006 )
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