New to the Forum

[pmcdonald8]

Hi, I am a mom of a son 16 and daughter 12. My son has had epilepsy since he was 6 months old.

Infantile Spasms. Controled with first of 3 months of ACTH Shots. No seizures until 6 years old.

Grand Mals 3 each, 3 months apart at 11:30 P.M. None after first pill of 1 1/2 years of Tegretol. No seizures until 15 years old.

Grand Mals...at first 8 months between, then 3 months between (over 6 month period), then 20+ days apart, THEN day before yesterday....4 seizures within 4 hours!

We are very alarmed and trying to gain as much knowledge as possible. Trying to figure out what next. How to find the best doctors, clinics, drugs, and a big one on my mind right now is HOW TO CONTINUE OUR INSURANCE COVERAGE FOR MY SON....so that we can continue our search for causes, identification and of course the ultimate...Control of the seizures.

I hope I can find direction here at this forum from all of your experiences.

[Meetz1064]

to CWE, pm!

You've found a great place to be!

In regards to continuing your insurance for your son, if the insurance company knew about it already, and has been paying for meds, doctor visits and such already, then continuing the insurance should not be a problem. Just because the number of visits/problems has gone up should not be cause for concern unless your policy specifically states that. That insurance compancy who is carrying him right now, and has paid for his meds CANNOT dump him. His ep is a pre-existing condiition, and that is illegal for them to do.

Should you feel like you need the backing of a lawyer, just to be safe, go onto the EFA website (follow the link I'm giving you) and check out the part about the legal area. They'll tell you what you need to know, I'm sure.

http://epilepsyfoundation.org/epilepsylegal/index.cfm

NO MATTER WHAT, stand up for your son. He deserves the best you can give him.

Take care,

Meetz

PS.....sorry, I got onto a bit of a um, well, soapbox there for a minute!

[pmcdonald8]

Thank you. I will go to the link.
Pam

[BuckeyeFan]

You sound like you are taking two of the very important steps already.

1. Trying to find your son the quality care that he needs with a rapidly progressing issue.

2. Trying to educate yourself to be a better care-giver and advocate. He will need you to fight for him. As Birdbomb would put it, be the squeaky wheel.

We will provide some extra prayers on top of that for you. Visit the thread "epilepsy 101" to get you started.

If you live in the US, Meetz is right about the insurance. They can not drop him as long as your insurance has been active. That is not to say that the deductibles and co-pays are easy to handle.

BEST OF LUCK!!!!

[Bernard]

Hi Pam, welcome to the forum.

Sounds like the Tegretol is no longer working. I suspect neuros will try adding/switching to a new drug. There are some other avenues you can explore too:

Proactive Prescription for Epilepsy

and as BuckeyeFan mentioned:

Epilepsy 101 - Part FAQ, Part tips and advice

[RobinN]

Hi Pam
Welcome to CWE I believe you will find some wonderful info here.

[brain]

Pam!

Welcome aboard to CWE! And the link
provided you below is the correct info
as well as there are other information
available in Epilepsy Foundation's site
too. There's help and knowledge there.
If you can't find it - they have a phone
number available, and just pick up the
phone and give them a call and they'll
be glad to help you in any way they can!

And in addition - browse around in CWE
and find even MORE resources, info,
and much, much more right here!

Glad to have you here and so sorry you
are having to endure all of this!