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#1
09-08-2009, 07:44 PM
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New, need hope.  Aidan was diagnosed at 6 mos but had seizures before that. He's turning 4 in Nov. He has cluster seizures normally about a month or so apart but this week he started on Thurs, went into the hospital, got discharged on Saturday then started another cluster last night, maybe one of the worst clusters I have seen since I've been in the picture almost 2 years. We are on medicinces 13 and 14 I think. Has a VNS set to rapid cycling. He's not a surgical canditate due to his seizures not being localized. We are out of ideas and hope some others have some that we hadn't heard of. Tried the modified atkins, no luck, not a candidate for keto, he had failure to thrive and has a feeding tube and already so drastically under weight. Tim     |
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#2
09-08-2009, 11:59 PM
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Hope is always here...you've found a place to make plenty of friends, and find lots of information. Support a'plenty here. Don't worry, we'll be here for ya.  Take care, Meetz  Last edited by epileric; 09-09-2009 at 12:03 AM. |
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#3
09-09-2009, 06:29 PM
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| Check out some of the info on alternative treatments here. Feel free to ask questions, vent in the padded room, etc. And just remember, you aren't going through this alone. We're here for you.
__________________ "Watch your words, for they become actions. Watch your actions, for they become habits. Watch your habits, for they become character. Watch your character, for it will become your destiny." Epilepsy 101 |
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#4
09-10-2009, 05:15 AM
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| I'm not sure what the type that will help you where you are at. You must feel quite isolated. I hope you find maybe some new ideas or at the very least find some comfort and support. Chestnut_mare |
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#5
10-05-2009, 06:22 AM
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| God bless you and Aidan. There are many great parents on this site who might be able to help. My Kaylee began having seizures when she was 5 months old and hers come in clusters also. Her largest cluster was 21 seizure's in 24 hours. We've tried numerous meds the past three years, but we finally found a combo that works. She's on phenobarb, trileptal and keppra, and she's been seizure free for almost 10 months. Everybody's different. You never really know what is going to work, but there is always hope. Don't give up, and please let us know if you ever need a shoulder a lean on. Hugs and prayers, Leslie G. |
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#6
10-05-2009, 08:32 AM
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| Hi Tim -- Welcome to the forum. There are all sorts of epilepsy stories here, and a wealth of information and support. I hope you and Aidan find the right treatment soon. Peace, Nakamova |
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#7
10-05-2009, 09:21 PM
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| Hello Tim - My heart goes out to you. I hope the support you receive here will help you to remain strong. It isn't easy watching your loved one. I will pray for Aidan.
__________________ Robin Neurofeedback - Rebecca's Story Feedback Matters- blog Knowledge is power and knowledge shared is power multiplied. -- Bob Noyce |
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