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IS / LGS Meds not working

Thu, 02/22/2018 - 16:42

Topic: Lennox Gastaut Syndrome

Hello, Here is our backstory. My son was diagnosed with infantile spasms at 6 months, we went through alot of meds to get it under control. Started with ACTH, Sabril, Pheno, Onfi, Banzel, and a few more I can't remember off hand. Nothing seemed to work. We were having up to 200 seizures a day. We have progressed into LGS as he is now 2 1/2 years old, with the development of a 2 month old, he is also gtube fed due to too many seizures to safely eat. He is currently on Keppra, Omfi, Depakote sprinkles and the Keto diet. We feel the keto has been the most helpful dropped his seizures from 200 a day to about 25 a day. We have tried so many meds and nothing seems to work and we need help getting any information on CBD. We've been doing alot of research on CBS. We want to try it but don't know where to start. We don't know where to look up trials or how to talk our doctor onto it. Sorry is some of this makes little sense, hard to put the whole story out.

Comments

WelcomeReducing the seizures

Submitted by just_joe on Thu, 2018-02-22 - 19:27

WelcomeReducing the seizures from 200 to 25 is very good. I did notice they you posted 4 and a few others then added what he is currently on Keppra, Omfi, Depakote and the KETO diet. One thing you might not have considered is the fact that as his body changes either medications or their dosages need changed or adjusted. The reduction you have seen shows that they are working. But which needs adjusting. As the body grows the medications need to be adjusted. I know I had to have mine adjusted about 6 times in a 9 month period of time. Changing from a kid to a teen wasn't easy but we kept my seizures down with those adjustments. Testing is being done on CBD your neurologist might know where in your state testing is being done. My neurologists office was one which testing for new drugs was being done for years. I have no idea where the testing for CBD is being done but you might get that information calling the 24/7 help line. That number is 1-800-332-1000I hope this helpsJoe

are you in a state with

Submitted by Amy Jo on Thu, 2018-02-22 - 23:39

are you in a state with friendly mmj laws? I know this is a topic epileptologists at our hospital have with parents dealing with intractable patients but different hospitals have differing openness to the topic. I’d be surprised if that isn’t a reasonable topic given how difficult LGS and other intractable forms of epilepsy can be. you’ll need a doc who is open to the idea first because they’ll need to know for interaction issues. broach the subject.

I found some really helpful

Submitted by Smithy on Wed, 2018-05-23 - 11:08

I found some really helpful information about using CBDs to treat Lennox Gastaut Syndrome here https://doctorfrank.com/medical-conditions/epilepsy-medical-marijuana/ CBDs helped the little girl in the video be seizure free for 866 days, it's incredible!

I was so hopeful for CBD

Submitted by kcorrao85 on Mon, 2019-09-23 - 19:56

I was so hopeful for CBD (Epidiolex) for my 8 year old son, however, it has not worked for us. I have heard amazing outcomes from CBD, so maybe it will work for you! My sons neurologists have stated Epidiolex and Onfi work very well together. Epidiolex is a pharmacutical version of CBD that just recently got approval by the FDA for use in pediatric epilepsy and LGS is one of 2 diagnoses that insurance and drs will allow a prescription for. It didn't work for us because even small doses of Onfi make my son appear drunk and in a stooper. CBD didn't seem to have any negative effects aside from diarrhea, it just seemed to have no real impact. I would say it's worth trying.