[sense2sea]

Hello all! My daughter has cerebral palsy and a seizure disorder..mostly cluster seizures, and several times a day brief (10-15 sec.) tonic seizures. She has a VNS implant (since 2003) and is on Keppra and Lamictal (since...well a long time now..after nearly every AED out there!) We had much success on the Ketogenic diet when she was younger, was on it for 3 years, and it actually changed her seizure pattern. Anyway...don't want to bog it all down with too many details to start off with! :sunchai r:
Mainly came browsing here tonight after reading over the bazillion triggers....Tara's (my daughters) are MSG, Nitrates/Nitrites, Red dyes, and now we're wondering if she isn't sensitive to wheat/gluten, maybe even milk products! She's been having clusters now for 4 days, despite the Diastat (10mg) and 1mg sl Ativan. (given on seperate days). So, happy to be here..well, haha, sort of!! Pam (Tara's Mom)
McMinnville, Oregon

[AfterMyNap]

Hi, Sense2Sea! Welcome to NeuroTalk!

Sorry to learn of Tara's condition, it has to be hard on both of you. I'm giving you a link to our CP forum where you'll find others who can help with your questions. Please feel free to join in anywhere.

CP:
http://neurotalk.psychcentral.com/forum52.html

[Kitty]

Hi there Tara's Mom and welcome to Neurotalk!! So glad you joined us!

[DM]

Hello Pam and welcome to NeuroTalk. Sorry to hear of your dau's troubles, but very glad you found us. NeuroTalk is such a caring community and I hope you'll check out our many forums and join in anywhere.

[tamiloo]

Pam, You face many challenges everyday, I hope you are able to get some rest here and there. I am a caregiver also for my husband with MS so we do have something in common...carry for someone we love dearly!!

I hope you will feel free to add to any forum. We have a great group of folks here at NT.

[weegot5kiz]

Hello and welcome to Neuro Talk sense2sea, you will find many helpful and caring people here, so do not hesitate to ask or answer. I know how hard seizures can be on a child, not to mention a parent, cause all you can do is hold them and that desire to fix it is so strong, praying and hoping your Daughter, can grow out of them, I ws blessed and my son grew out of it when he hit puberty and he had grand mal on both hemispheres. I would say about half a year after puberty the seizures ceased, don't hesitate to ask if you need to talk or have questions, again welcome to NT

Glad to hear that diet is helping, I was slowly starting sean on that diet too and puberty hit, cant even tell you how many meds we went through as I am sure you know about. again hang in there mom, there are many supportive souls here

[Darlene]

Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help.

I have listed the epilepsy forum below, their are a great number of listeners that are willing to help.

http://neurotalk.psychcentral.com/forum11.html

Give Tara a great BIG for me.

Again welcome, looking forward to seeing you around.

Darlene

[Bannet]

Hi and Welcome to NeuroTalk sense2sea There is lots of room to roam here and you will meet some really nice people.

[ali12]

Hello and Welcome to Neurotalk - you will meet many great and supportive people here!!

I am so sorry to hear about everything that your daughter and yourself have and are currently going through

If I can help you in any way, please just let me know.

Take care of yourself and i'm looking forward to seeing you around the forum soon!

Alison

[MSCherokee]

Hi Pam and welcome to Neurotalk! My hubby has CP as well.