Hi, im new! Both my children have Epilepsy

Michelle - posted on 04/05/2009 ( 1 mom has responded )

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Hi my daughter Ashley is 7 almost 8 now, she was DX'd with Epilepsy @7mths she was having 3 different type of seizures, Grand Mal, Absence, and Drops. She was 7mths when she had her 1st Grand Mal and Drop Seizure, but they believe that she was having Absence seizures since she was born. She wears a Seizure helmet.
She is Developmental Delay, she never crawled, at 8mths she started scooting around on her Tushy. And she was 16 1/2 months when she started walking. She wasnt talking either only had 2 words, we learned sign language so we could teach her how to communicate with us other than pointing and crying. She does talk now but is still in Speech Therapy. She is also in Physical therapy, Occupational Therapy and Social Therapy. She has tried many many many Seizure meds and none of them worked, she was having Grand mal's once a week, Drops everyday i can't remember how many, and 40-50 absence seizures Everyday.
The doctors did ask us if we wanted ashley to have surgery but we didn't want that if they could be controlled in other ways.
Then in 2007 at the end of my "Let's try another medicine" i asked the Doctor about the KETOGENIC DIET(and he did mention at this time that if the diet didn't work the next step would be surgery). We started the Diet in July 2007, within a week Ashley had 0 seizures. At the time she was on 15 medication's, over these almost 2 years she has gone down to 1 seizure medicine(Lamictal) and a bunch of Supplements that she has to take with the Diet. She is able now to go without her helmet in certain places, and has to wear it still during physical activity. In July of this year we will start weaning her off the Diet and Hopefully(crossin fingers) she won't have any seizures.
Ashley was in such a fog before this DIET and now she has come out of her shell, and is jumping leaps and bounds developmentally. She was having so many Absence seizures a day that she just wasn't taking in any information.
Ashley was also born with Cleft Mitral Valve. And has ODD and Seperation Anxiety.

My son Jordon is 9 he was DX'd with Epilepsy in 2002 he was 2, he has Grand Mal's and Absence seizures. He is taking atm Depakote ER, and Zonegram(sp?). These have controlled his Grand Mal's and he is now only having Absence seizures 1-2 times a day, so somewhat controlled. Jordon also has Type 1 Diabetes Mellitus DX'd when he was 14mths old, Sensory processing Disorder dx'd in 2002, Juvinile Rheumatoid Arthritis dx'd in 2007, and a couple more issues. He can not go on the Ketogenic Diet due to 2 other medical issues he has.

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Connee - posted on 04/06/2009

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my daughter megan is now almost 13. She was diagnosed with absence seizure disorder when she was about 8 yrs old. The docs have uped her meds to three pills twice a day to try and control her seizures but she still has them. She recently started playing volleyball and seems to be doing ok. i still worry about her having a grand mal but(knock on wood) she hasn't had one. it gets frustrating as a parent when other parents see her having a seizure( and they don't know her condition) and they look at her funny. it's one of those things(do i have to explain to them that my daughter is having a seizure?) that i hope one day will be understood and people realize that this too is a sickness that needs to be brought up. i just hope one day they find a "cure?" to help control these seizures.

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