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alternative meds for seizures

Sun, 10/20/2013 - 11:57
my daughter is 4 years old. she has been hospitalized at least 10 times because of febrile seizures that last 1 to 3 hours. she has been on 3 meds for a while and she has used two others in the past. all with no results. I was wanting to hear some stories from other people who have tried other methods such as cannabis oil, ketogenic diet. please help me in my search to help my daughter.

Comments

Re: alternative meds for seizures

Submitted by aprilrunge on Thu, 2013-11-14 - 15:32

Hi my daughter had febile seizures too and 3 times in status epilepticus like you.  But my daughter's longest seizure was 1.5 hours....I'm so sorry, it is so scary.

After 5 failed meds and hundreds of thousands of seizures we INSISTED to try the ketogenic diet. Within 4 months she became seizure free. We used dietary therapy (which is a medical treatment) for 5 years. She is seizure free, med free and diet free. Released from epilepsy care and now 10 1/2. I cannot say enough about the diet. It saved my daughter physically and cognitively. I'm not anti-medication, but I am pro food and after 2 failed drugs you have just a 5% chance to become seizure free on monotheraphy.  For keto 33% can become seizure free. Check it out at a center who has a fairly large dietary therapy program...Modified Atkins and Low Glycemic diets can also be used. 

April Runge mom to Nevin, Doose Syndrome, seizure free, med free and diet free co-author, www.gordyandthemagicdiet.com

Hi my daughter had febile seizures too and 3 times in status epilepticus like you.  But my daughter's longest seizure was 1.5 hours....I'm so sorry, it is so scary.

After 5 failed meds and hundreds of thousands of seizures we INSISTED to try the ketogenic diet. Within 4 months she became seizure free. We used dietary therapy (which is a medical treatment) for 5 years. She is seizure free, med free and diet free. Released from epilepsy care and now 10 1/2. I cannot say enough about the diet. It saved my daughter physically and cognitively. I'm not anti-medication, but I am pro food and after 2 failed drugs you have just a 5% chance to become seizure free on monotheraphy.  For keto 33% can become seizure free. Check it out at a center who has a fairly large dietary therapy program...Modified Atkins and Low Glycemic diets can also be used. 

April Runge mom to Nevin, Doose Syndrome, seizure free, med free and diet free co-author, www.gordyandthemagicdiet.com

Re: alternative meds for seizures

Submitted by just_joe on Thu, 2013-11-14 - 16:12

DIet can and do work for some people. If it works don't fix it as they say.

Rhere was no diet when I waas diagnosed but I also had a garden and food was grown in it. You name it and I generally had it somewhere.

Sometimes meds don't work and with me I have been lucky. They found medications I took for many years and it kept me under pretty good control. Not completely seizure free but a seizure now and then I was not worried about.

Hope your daughter stays seizure free

Joe

DIet can and do work for some people. If it works don't fix it as they say.

Rhere was no diet when I waas diagnosed but I also had a garden and food was grown in it. You name it and I generally had it somewhere.

Sometimes meds don't work and with me I have been lucky. They found medications I took for many years and it kept me under pretty good control. Not completely seizure free but a seizure now and then I was not worried about.

Hope your daughter stays seizure free

Joe

Re: alternative meds for seizures

Submitted by aprilrunge on Thu, 2013-11-14 - 15:55

One more thing..,,people are moving to Colorado in droves....The Realm Of Caring... they have one of the largest cannabais treatments for pediatric epilepsy.  I know several families who have not achieved seizure freedom by meds, diet or surgery and finally achieve it with cannabais oil.  Good luck! 

April Runge mom to Nevin, Doose Syndrome, seizure free, med free and diet free co-author, www.gordyandthemagicdiet.com

One more thing..,,people are moving to Colorado in droves....The Realm Of Caring... they have one of the largest cannabais treatments for pediatric epilepsy.  I know several families who have not achieved seizure freedom by meds, diet or surgery and finally achieve it with cannabais oil.  Good luck! 

April Runge mom to Nevin, Doose Syndrome, seizure free, med free and diet free co-author, www.gordyandthemagicdiet.com

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