Seizures from 10 days old thru 9 years old

Heidi - posted on 07/22/2009 ( 1 mom has responded )

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Our oldest daughter Adgre Anna had her first seizure at 10 days old - May 24, 2000. She was hopitalize with thrush and we where sitting in the room and had a seizure. She had Febrile Seizures, they last for 20 seconds and she had 4 seizures in 24 hours. They started her on Phenobarbital until she was 1 year old. Baby's on medication not a good thing. We found a medication pacifer = WORKS GOOD= She had Neonatal Seizures 10 days to 2 months= Pedaling leg and arm movements and drooling. She had 4 of these. AND Infantile Spasms = head and arms fell forwards. She had 2 of these. From 1 - 3 years old she was on different medication (2001 -2003). From Phenobarbital, Dilation, Valproic Acid, Keppra, and Topamax. Every medication didn't work, until we tried Valproic Acid. This medication made her seizures almost stop. She had Absence Seizures Also called Petit Mal = blank stare, eyes blinking, lip smacking, and when you call her name she never respond. She had 6 of these. We had her Pre-K teacher call us when she did this. She had HIGH FEVERS = 100 - 103 and also got alot of ear infection = 6 ear infections in 10 months. She had SETS OF TUBES (2002). Her fevers disappeared and the seizures were stable. She was also struck with Amonia in Aug 2003, with a tempature of 104, and hospitalized but no signs of seizures. And she was struck again with strepp throat in April 2004, with a tempature of 105 and was hospitalized, but no signs of seizures. She had her adnoids and tonsils out with surgery. Seeing she had no seizures since 2003. We took her off her medication and she did good thru Pre 4 -5, K, 1st grade, and 2nd grade = 2003 - 2008. 2006 she ran a high fever and they put tubes in her ears. AND NO SIGNS OF SEIZURES..... BUT, March 22, 2009 our 4 years old (Adgre Anna's sister) was sick again. We where taking her up to the E.R. This was our 4 years old = 2nd ear infection in 2 months. WHILE where on the interstate about 20 mins. from the hopital. Adgre Anna had a GRAND MAL SEIZURE. Dad held her down so she will not hurt herself and I called the hospital. I told them that our daughter was having a seizure and tell the police not to stop us. I drove 75 miles per hour and it took us 1/2 the time. WE HAD 2 KIDS IN THE E.R. (NOT FUN). They started her on Keppra. We had to go and get the Keppra from Wal-mart (they didn't carry it at the hospital). 4 hour later we went home Adgre Anna had 3 seizures in the last 5 months. She had a EEG = needed more info= and a MRI = it found she had a spot on her brain from the seizures and had no signs of a stroke= Her medication was updosed 3 times and still waiting for the Keppra to take effect.... SCAREY == SHE HAS GRAND MAL SEIZURES IN THE MIDDLE OF THE NIGHT = SHE WILL GET OUT OF BED AND COME IN OUR ROOM= SHE CAN WALK BUT HER HEAD IS TILTED BACK, CHOKING ON HER SELIVA, EYES ROLLED BACK, HER HEAD JERKS, AND HER ARMS AND HAND ARE STIFF. THIS HAS HAPPEN 2 TIMES AND WE PUT A BABY MONITIOR IN HER ROOM. She is HIGH RISK for seizures.... We never know when the seizures are going to come on. When she has the seizures == she sleeps with us for 1 to 2 weeks == her safe net............. Aug 12th we go back to the doctors office. If we don't get a good reason why this happens. We are going to have a 2nd opinion........................

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Rebecca - posted on 07/24/2009

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Hi ....I totally understand your fears and anxieties. This sounds like my daughter, but hers were silent and the Dr...didn't believe me from the time she was born until she was 5 and flat lined. After that I got a new nero. She is on Keppra and Depakine and Diazapan. We also found her L-caratine levels to be dangerously low...have her tested for that. It's how they absorb carbs. she was in the 16% -deathly low. Also, Ranitidine was add to help with the acid reflux from the seizure meds. I hope this helps! And...a second opinion is always good.

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