Hi everybody!

[Ilgen]

I believe that sharing my thoughts and doubts can somehow help me solve the situation I'm in. My son was diagnosed with autism when he was 2 (12 years ago), which I still believe is a case of misdiagnose. When he was 6 he had his first seizure and we had to hospitalize him. He was seizure free for two years although i didn't gave him the anti epileptic drug as described from the doctors, I have this attitude against medications in general. Meanwhile I treated him for gut parasites and applied a GFCF diet. I still remember this period as the healthiest one for Patrik (Patrik is my son's name). But the seizures were back again and although his overall performance was very much improved he was (and still is) nonverbal. So we stopped the GFCF diet and started the anti epileptic treatment (valproic acid). I was told from the medical staff that there was no need for a specific diet unless the examinations show it necessary. A specific examination like antitransglutaminasa showed no allergy or intolerance toward gluten. I felt stupid and disappointed. He started taking valproic acid since then (I always take care to expose him to a minimal dose related to his body weight) and has experienced seizures once or twice a year. All of a sudden he started to have frequent seizure episodes. From last November the frequence got higher and the last two episodes are 5 days apart, which scares me a lot. We had an MRI and an EEG both showing nothing to be worried about. We also had a bunch of blood examinations trying to figure out the situation. The doctors were interested on depakiemia value, which of course was low, and couldn't notice some explicit changes in blood formula showing a parasite infestation. They described a higher dose of valproic acid and another supporting drug.
Yes I hate to expose him to so much poison without even knowing the real cause of the seizure. Now I am planning to treat him once again for gut parasites and the light anemia that is present. I am also planning to go GFCF again. I would really appreciate if someone had any type of similar experience and expertise related. Thanks a lot, I hope that was not too annoying!

 

[Nakamova]

Hi Ilgen, welcome to CWE!

I don't have advice to share, but want to offer support. Like you I am not a fan of the brain meds, but after trying several times to go med-free (unsuccessfully), I am resigned to being on lamotrigine. It has given me full seizure control and the side effects are tolerable. It helps me to think of epilepsy medications as flawed and problematic rather than as poison, especially since many CWe members have found relief using them.

This thread about non-drug approaches might be of interest: http://www.coping-with-epilepsy.com...izure-free-old-member-returning-forums-25502/

And even though you are not confident in the autism diagnosis, you might be interested in threads by KarenB about her search for a dietary approach that will help her son: http://www.coping-with-epilepsy.com...istant-childhood-epilepsies-19673/index2.html
http://www.coping-with-epilepsy.com/forums/f23/update-seizure-free-25003/

Best of luck to you and yours,
Nakamova

 

[Ilgen]

thanks a lot!

 

[Suman]

Ilgen,

Welcome to the group! I'm sorry that you're son has started to have an increase in seizures.

I'm mom to a 21 year young man, who has autism and began having seizures 4 years ago. We have tried several meds, either the med controlled the seizure and it came with terrible side effects or did not work to control seizures.

I just came across this link in Diets for Epilepsy, I do not have any experience yet. Perhaps this is something you'd like to explore:
http://nutritionforseizures.com/research/

-Best wishes,
Suman

 

[Ilgen]

Thanks for your interest Suman. I have always thought that anti epileptic drugs only deal with symptoms and do not treat the cause. We live in Albania and there is a very low understanding of neurological conditions here. I always make my "home works" before I contact a doctor. And very often the conversation ends up with the mere phrase "well at this point you know more than I do" which is devastating said from a doc. I miss being involved in a useful conversationot where I can learn new things! I wish you and your son all the best!

 

[Porkette]

Hi Ilgen,

Welcome to CWE! For many yrs. told valproic acid for my seizures and it worked great along with the drug mysoline also called primidone. I had to go off the valproic acid because the drug can cause anorexia for some people where you can either gain or lose weight and I lost 70 lbs. in 4 months. I've found taking vitamin B12 once a day and putting coconut oil on my skin once a day had helped reduce my seizures a lot the coconut oil builds up ketones in my body which in turn reduces my seizure and the vitamin B12 helps calm the nerves.
It sounds like your son may be at the age where his hormones are changing a lot because he's growing up and sometimes that will trigger seizures for a person. I had this problem when I was younger. I've also found I have "seasonal seizures" which means at certain times of the yr. I have more seizures. I have most of my seizures in the fall and winter and fewer in the spring and summer. This is happening because there's less serotonin in the fall and winter compared to the spring and summer. One thing you may want to do is keep track of your sons seizures by writing down what time of day or night they happen by doing this you may look on your calendar and the Dr. or you may see a pattern as to what days of the month or what time of the day your son has more seizures. I was told to do this and every month between the 18th and the 28 I will have 2 days where I have clusters of seizures. One thing that has really helped me is the medical marijuana I was amazed how that reduced my seizures. I wish you and your son the best of luck and May God Bless the Both of You!

Sue

 

[Ilgen]

Thank you Sue!

 

[Topcat]

Hi