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Old 07-23-2002, 12:31 PM   #1
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Join Date: Jul 2002
Location: Clovis, CA USA
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hayley's mom HB User
Unhappy My beautiful 19 month old with seizures

My husband and I had a beautiful healthy happy baby but when she was 7 months old she suffered a massive grand-mal siezure. I called 9-1-1 because I had no idea what this seizure meant. They gave her valium to stop it and then she went into respiratory arrest. Well several days, tests, tears and panic attacks later she came home. Only to have another one a month later, and so on. She has had 7 in total. MRI's, CT scans, EEG's, lumbar punctures, bone marrow taps, x-rays, blood work, etc all show nothing. They call it idiopathic status epilepticus. Her seizures at first last upwards of 30 minutes. Now we can stop them at home in a minute or so. Several medications later, she is on lamictal. She seems to tolerate it but I, like any other parent, worry about side effects. She was on phenobarbital for a few months, but it was like having another baby. She was so lifeless and without smiles. I couldn't stand it. Since they weened her off of that she is "back to normal". I was just wondering if there is another parent out there with the same or similar situation. I have so many questions and comments and just need someone to talk to. I wish all of you health and happines. Thank you for taking your precious time to read this. I appreciate it greatly.

 
Old 07-23-2002, 02:41 PM   #2
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Join Date: Jul 2002
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hayley's mom HB User
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Thank you for responding. She is on regular food now. Completely off of baby food and formula. She drinks whole milk and eats a lot of vegetables but only recently discovered she likes meat. She didn't eat a lot of it at first I think because of the texture but now eats it. Her favorites are peas, corn, and carrots. The meat she prefers is chicken but also loves beef. She eats green apples galore. Have you heard of an overload of vitamin A being connected to seizures?

[This message has been edited by moderator1 (edited 09-18-2002).]

 
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Old 09-21-2002, 02:54 PM   #3
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Join Date: Sep 2002
Location: NSW Australia
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J'S MUM HB User
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Hi Hayley's mom ,
I have a 5yr old with Epilepsy and also post at this site .
God bless Hayley .
J's mum .

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This message has been edited by Skeetercatt (edited 09-21-2002).]
Sorry for the trouble ,
Cheryl

[This message has been edited by J'S MUM (edited 09-25-2002).]

 
Old 09-21-2002, 02:57 PM   #4
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Join Date: Jul 2002
Location: Clovis, CA USA
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thank you - i have been a member there for a couple of months - after i saw this place. I find there is a lot more support there. Thanks J's mom!

 
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