Concerned parent of non verbal son with unstable epilepsy

[Concerned Parent]

Greetings, Thank you for allowing me to join this group.
We live down under, have an Autistic son , late 20’s with epilepsy.
Although he is on 3 epilepsy medications , he is still suffering seizures, being non verbal, it’s really hard to know how these are affecting him?
The neurologist is saying to keep putting the meds up, but no improvement in these abating.
Has others experienced unstability while increasing the medications?

 

[CQ:)]

Hi Concerned parent
Welcome from a fellow Aussie.

I’m not sure where in Australia you are at but have you looked at getting a referral to a epiologist?
They specialise in just epilepsy so should be able treat your son further then a regular neurologist.

I have left temporal lobe epilepsy and mainly take partial seizures. I used to see a regular neurologist who just kept putting me on meds and increasing the meds or trying new meds. The meds weren’t helping and I was still having partial seizures on a regular basis .

Eventually I was referred to a epiologist at the Austin health and it was suggested I have surgery which I had in 2011. I now see a neurologist at the epilepsy clinic at the Austin health for regular follow ups. My seizures did return 2 years after surgery and I am on 4 meds but 3 are for seizures and 1 is for migraines and they’re all lower doseages.

 

[Porkette]

Hi CP,

Welcome to the forum! CQ gave you some good advice about seeing an Epileptologist. I saw a neuro for many yrs. but
when I started seeing an Epileptologist I was put on fewer meds and my seizures were controlled much better. I also had
surgery to help reduce the seizures.

I'm sure you have heard that autistim can sometimes lead to seizures. I have a niece whose autistic and she has a hard
time speaking also. Of course speech is controlled on the left side of the brain and if the seizures are coming from the same
area that could be a lot of the problem.

The best thing to do is to ask the Dr. to do a DNA test on your son by doing this they will be able to see the amount
of enzymes in his liver and they will also be able to see his body chemistry and they will be able to match his chemistry
to the best seizure med with the least side effect. This is what my Dr. did to me after trying me on many different seizure meds.
I had the DNA test done and they found out I was drug resistant to all seizure meds out on the market now so I was told
to try the medical marijuana (cbd) and I am amazed at how that has reduced my seizures it has done wonders for me.

If you haven't been keeping track of your sons seizures get a calendar and write down the time and what type of seizure
he had by doing this the Dr. may see a pattern in his seizures as to what time of day/night the seizures happen or what days
of the month. I found out I was having seasonal seizures which are seizures that happen at certain times of the yr. and then
they decrease later on. I have fewer seizures in the spring and summer compared to the fall and winter because during the
spring and summer there's more serotonin this time of yr. compared to fall and winter. I wish you and your son only the best
of luck and May God Bless the Both of You!

Sue