New mom

[ggincali]

Hi,
My name is Gayu and my almost 8 year old son has drug resistant epilepsy and is also on the spectrum. he also has some genetic markers and my husband and I are going to undergo genetic testing ourselves. He has both absence seizures and partial complex/tonic seizures and generalized tonic clonic seizures at times (apologies if I am using outdated nomenclature for classification)

We are trying the modified Atkins diet and it is a huge lifetstyle change for us. I'm trying not to get very overwhelmed and hope this group gives me some good ideas!

Thank you!
Gayatri(Gayu)

 

[Nakamova]

Hey Gayu, welcome to CWE!

Will you be working with a dietitian/nutritionist to implement the MAD? That can help take some of the pressure off. In addition, while it's possible that you may see results right away, some dietary changes can take up to 6 months to generate benefits. I hope it's the former for you!

You may be interested in the Diets Subforum:
http://www.coping-with-epilepsy.com/forums/f39/

As well as these threads:
http://www.coping-with-epilepsy.com/forums/f42/autism-epilepsy-general-epilepsy-experiences-23950/
http://www.coping-with-epilepsy.com...related-epilepsy-amino-acid-supplement-17743/
http://www.coping-with-epilepsy.com...et-drug-resistant-childhood-epilepsies-19673/

Best,
Nak

 

[ggincali]

Hi Nak,
Thank you for the welcome!
Yes we are being monitored by a dietitian trained in the keto protocol for epilepsy. We took time to transition because we were introducing meat slowly into his diet and reduce carbs gradually to 20g. While this will probably not give quick results, it was something RD and us mutually agreed because she didn't want us to fail.

I will check those threads you mention.
Thanks,
Gayu

 

[Porkette]

Hi ggincali,

Welcome to CWE! Just like your son I'm drug resistant to all seizure meds that are out on the market right now. My Epileptologist did a DNA test on me to find the amount of enzymes in my liver along with seeing my body chemistry and this is how he found out I was drug resistant. I have both complex partial and absence seizures. The ketogenic diet is really good for kids but one thing that has also helped me as crazy as it may sound is putting coconut oil on my skin once a day. The coconut oil builds up ketones in my body which in turn reduces my seizures. If you want to try this with your son just be sure you get the organic type of coconut oil right in the grocery store. Wishing you and your son the best of luck and May God Bless the Both of You!

Sue