She had a seizure.
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| Fri, 04-14-2006 - 8:00pm |
Some weeks should just not exist I think. When it rains it pours.
I think Cait had a generalized seizure this afternoon at church. We were half way through the stations when I start to hear a crash. I look over and she is going down face first onto the floor and shaking. Took a few seconds to get her to respond and I walked her outside. She was pale as a ghost and has a nice bruise on her chin.
For those who haven't been around for a while, Cait has a history of partial seizures and an abnormal EEG. She was on seizure meds for 4 years. We seemed to be past the worst of it and she didn't have any significant seizures for over a year and she had started her period a year before, so we weaned her seizure meds last summer.
She told me after "I thought it was like those other times I see spots and then it clears" WHAT!!!!!!!!!!!!! Of course she never thought to tell me that was happening. Those all could have been tons of partial seizures.
Heading to the doctors in 5 minutes. Couldn't get a hold of the neurologist so I am going to the peds office to hopefully at least get some help prior to the weekend. Maybe they can get in touch with the neuro.
Renee


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Oh Honey,
I am so, so sorry. What a week you have had! I guess the good news is that you know she responds to meds, and which ones. I know If it turns out to have been a seizure (and it sound like one all right), there are other implications, and my heart is breaking for you right now. Call or IM me when you get back from the doc and have a minute -doesn't matter how late it is my time.
-Paula
visit my blog at www.onesickmother.com
(((((((((((Renee)))))))))))
Two steps up and three steps back!
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Well, and update for those who don't know.
Yet again the medical profession has let me down. I saw a pediatrician at my doctors office and he basically patted me on my back, had Cait's vision and hearing screened and sent me on my way saying he thought it a simple fainting episode and to have her walk 40 minutes a day (she is low tone - no kidding). If it happens again come back. He poopooed everything I mentioned about her past history of partial seizures, her Aspergers (1/3 of kids with ASD can have seizures), about her symtpoms during the seizure and symptoms she has now told me about that she regularly has. He actually seemed completely clueless about seizures. Told me he saw no neurological signs when she was ticcing the whole time and I saw at least 2 other neuro signs in his testing. Been to enough neuro appointments to know what he was doing and what to look for.
So now I have to wait until monday and try to get ahold of her neurologist and try to get in there. I am going to hear it from her because we haven't been in over a year. I basically gave up on all medical doctors then.
Frustrated,
Renee
((HUGS))
I hope you don't mind but I showed your posting to DH because he is in Pharma sales and his specialty drug is Keppra(seizure med). He deals with neuros everyday and knows a lot about seizures. First off he agrees the ped doc you saw is an idiot and he said if you feel she had a seizure you should call your neuros office to see who is on call and they may see her sooner than Monday. He also said if they suggest you put her back on meds that he thinks the newer meds are much better for a young girl like Cait. He thinks his own drug Keppra is good and he also thinks Lamiltral is also a good one. He was wondering why they had taken her off her meds even though she had an abnormal EEG? Keep us posted! You'll be in my thoughts and prayers.
Teresa
Theresa,
THANKS! I would love to pick his brain some more. Cait was on Keppra for 3 years actually but it never changed or cleared her EEG and she continued with symptoms. Then she started to have this wierd tic in her walk they attributed to her "movement disorder". Caits tics always faded a bit when the meds were working and it was felt that her tics were related to her seizrue symptoms.
Well, when she started this complex tic and having other sensory symptoms (tingling) plus mood issues with the keppra. She couldn't be raised anymore because higher doses of keppra made her a ABSOLUTE beast! they switched her to Trileptal. after a year or so on that her EEG was STILL the same. But she really wasn't having any different or more seizure symptoms. The doctor wasn't sure the symptoms she was having were seizure related. Cait is not good at relating symptoms she is feeling due to communication challenges.
At anyrate, the plan was always if Cait could get through puberty without generalized seizures we would stop meds. Last spring her EEG was the same and no generalized seizrues so the doc said if she doesn't have any by the end of the school year you can wean her over summer. Cait wanted to be off meds so I said fine. Didn't see the meds making a dif since her EEG never cleared at all.
This same doc is very busy and I think we have become a number to her. I am not sure now why we stopped. I thought all was cool and clear. I guess Cait has been having symptoms for a while but because of her communication issues I didn't know until she mentioned it in passing today in relation to this episode.
GRRRRR
Thanks for the info. If he has any other advice I would love it.
Renee
I wish I had some comforting advice or words, but I don't. I don't know anything about seizures, but I can imagine your experience was very scary! I hope you get some answers soon.
Kelly
Dear Renee,
Oh I am so sorry, and you must be very worried. I do hope you are able to get in to see your neurologist quickly and start on some real answers soon.
Anyways, big (((((HUGS))))) to you. You are in my thoughts and prayers tonight, as is Cait, Mike, and rest of family.
Sara
Dear Renee,
Just sending you more hugs, positive thoughts,and prayers. What a rough week for you all. You are right to be disappointed in your ped. I hope you can get a neuro visit right away Monday and help Cait.
Love and hugs,
Katherine
OMG OMG OMG!!!
Thinking about you guys! Glad she didn't bump her head worse.
Chrystee
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