Doose epilepsy & Onfi wean

[Marley Fields]

Hello-
I am new to the forum, and looking for insight to help my 5 year old son with Doose syndrome.

We have been battling varying seizure types (GTC's, drops, absense, myocolonic jerks, etc. for about 16 months now. Failed 7 AED's, and currently on Keto diet and 35mg Onfi daily. Still not controlled, so wanting to wean Onfi as it is not helping.

Looking for insight on the wean. Going slowly taking 2.5mg every 4 weeks but its been bad!!! Constant clusters of absenses, and non-convulsive jerks, very foggy and not steady on feet, barely talking. While weaning other AED's we gained so much clarity. We are slowly adding CBD to hopefully help with wean.

Glad to find this group!!

 

[Nakamova]

Hi Marley, welcome to CWE!

I looked through the archives for some threads that might be helpful and/or of interest. The ones below are from a CWE member who was particularly focused on using dietary methods to control her son's seizures as well as providing research on studies related to childhood epilepsies.

http://www.coping-with-epilepsy.com...et-drug-resistant-childhood-epilepsies-19673/
http://www.coping-with-epilepsy.com/forums/f42/thinking-weaning-your-child-off-seizure-meds-21414/
http://www.coping-with-epilepsy.com/forums/f23/staying-safe-during-eeg-med-changes-18428/
http://www.coping-with-epilepsy.com...togenic-diet-kids-intractible-epilepsy-17504/
http://www.coping-with-epilepsy.com/forums/f28/gluten-free-sugar-free-reduced-carb-meals-18858/
http://www.coping-with-epilepsy.com...-behavior-violence-low-impulse-control-21376/
http://www.coping-with-epilepsy.com/forums/f23/1-month-seizure-free-19791/
http://www.coping-with-epilepsy.com/forums/f23/update-seizure-free-25003/

 

[Nakamova]

One more more link! I imagine you've seen this already, but just in case you haven't: http://reset.me/story/cannabis-saved-my-life-myoclonic-astatic-epilepsy/