Living with epilepsy - Introduce yourself & meet others

HI Colleen! im a father of two daughters. last october 2021 i discovered that my two dautghers were sick and suffer from epilepsy. the eldest is 12 years old and the youngest is 8 years old. what helped us discover the illnessess is when the youngest start chouting while in sleep. the oldest is suffering while she is too young but we did not notice because she does not chouting or having seizure like her sister. she keeps silent but absent minded for seconds..

@chahali22, welcome. Thank goodness that your daughter's shouting in her sleep helped lead to her diagnosis of epilepsy and that her diagnosis made you aware of the condition to recognize it in your younger daughter too.

What type of epilepsy have they been diagnosed with? Have either of them been offered treatments?

Hi fellow members, I'm writing to to find out if there is any interest for a social event perhaps at a Jax park where young epilepsy adults and their families 21-35 could socialize over a grill filled with burgers and dogs and perhaps play volleyball. The purpose would be to have a day free from the stigma of seizures and just have fun and make new friends. Trading medical stores and experiences is important but making new friends and having fun is critical for a healthy mind and body.
James the Dad

Are there any epilepsy support groups in Phoenix that meet in person?

Hi James the Dad,
I'm Lisa the Mom! My son is in Scottsdale attempting to live by himself (all family is in Indiana) He has been there a little over a month and hasn't met anyone! Since his seizures are uncontrolled by medication he isn't able to work. He would love to be able to make new friends and actually have some fun!
So don't give up on this great idea!

You can check further with Epilepsy Foundation of Az.

1 NE Valley Epilepsy Empowerment Group
7pm (AZ time) on Bi-monthly
To join e-mail lch03@aol.com.
if zoom or in person
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2 Tucson Support Group
third Sunday4:30pm email; Arizona@EFA.org for upcoming meetings.

Take care,
Jake

My name is James and my son which is 34 has been suffering from seizures for over 25 years. We've gone through the laser ablation surgery and then a VNS implant without much success. We had the implant back in January of this year and still hoping that we'll see some therapeutic benefit as time goes by. We've been a patient at Mayo of Jacksonville going on five years and they are by far top gun in the Epilepsy world. And they too seem frustrated in our limited success.
Seems like everyone involved in the pursuit for a seizure free cure, are focused on a long term medical treatment plan. But we as caregivers and our family members who are patients live with the daily grind of medication, frustration, depression, anxiety and the expanding isolation of the patient and his/her peers.
They live a life with restrictions on transportation and lifestyles that make them inferior. Somehow this gap need to be filled with social support. We (the patient) need a social network to insure that when the medical breakthrough day comes our children will have a strong spirit, in addition to a healthy body.
A caring Dad

Hi @jamessr
I can fully understand your frustration as this has happened somehow to me and my husband as well.
Have you already tried integrative medicine treatment? It has helped me to bring some quality back to my life.
There is a book that has inspired me a lot and that I recommend called Brave New Medicine: A Doctor’s Unconventional Path to Healing Her Autoimmune Illness by Dr. Cynthia Li.
"Our worst experiences can be the best teachers, as they catalyze unexpected discoveries and open us to new possibilities and perspectives." - The Choice - Dr. Edith Eger
Stay strong!!!
Santosha

Thanks for your reply and recommendations for the book. I'll look for a copy.
Are you a patient of Mayo in Jacksonville?

Are there any North Florida Epilepsy support groups that meet in person?
James