Requesting suggestions on what to read

[Zee]

I would appreciate feedback that will direct me to posts or other on-line resources to help me navigate as directly as possible to information that may be helpful in our situation with our daughter. I have listed the details below. Thanks in advance!

- 21 yrs old. Has autism (moderately verbal, can't answer questions about what she might feel before or after seizure).
- First seizure almost 2 years ago. 6-7 seizures since -- all tonic-clonic.
- takes 5mg Prozac each day, started 3 yrs before first seizure.
- takes a low-estrogen oral contraceptive pill for regularity, started 2 years before first seizure
- all seizures at home, all between 2pm - 8pm
- have seen a neurologist - he ordered EEG - we were not able to accomplish the test; issues related to her autism, not successful.
- she is not on any anti-seizure medication
- does strictly follow a gluten-free diet, has for 17 yrs.
- otherwise very healthly

Since the advice from neuro is to start her on a med to prevent seizures, I need some advice from others who may have been faced with similar circumstances. She has worked so hard to obtain the level of speech and connectedness she has now; I fear a new med will interrupt those skills. I also worry that, left unmedicated for seizures, she will injur her brain during a seizure and resulting fall.

 

[travel bug]

Hi Zee,

Welcome to CWE.

There are many people here who are more knowledgable than I am who will likely come along with some suggestions. But in the meantime, you might check out the ketogenic diet which is similar to the Atkins diet only more stringent. It has only been tested with children, but I think quite a few adults use it too to control seizures. It is so strict that you need to be supervised by a doctor, but it has worked for some without having to go on meds.

I hope someone comes along soon with some firsthand experience or other suggestions.

Good luck.

 

[Zee]

Thank you so much!

 

[Chaz1]

Hello Zee

warm welcome.

gluten-free diet and otherwise healthy - thats great!

May I suggest you listen to an interview with Natasha Campbell McBride (there are many). She has 1st hand experience with autism and overall brain health. Its long, but well worth the time, in my humble opinion.



It’s such a hard choice to make, to medicate or not...and a very personal one at that...and you are your daughters advocate. Trust your insticnts. I feel your worry, my Son 28 has Epilepsy, we try manage using as natural approach as possible.

I wish you nothing but the best