Newly Diagnosed Tween

[Rebecca W]

Hello. My niece Sarah, who is 11, was just diagnosed with epilepsy. She had her first seizure 3 weeks ago and has 2 more since then, all 3 of which were in school. I am looking for resources (books, websites, chat rooms, etc.) particularly targeted to pre-adolescents or teens with epilepsy so that she can read some information about how others with this condition have handled the peer aspects (embarrassment, feeling different, etc.) Can anyone help? They live outside of Boston. ALso, if anyone has any suggestions of how I can be of help or give support, I'd love any suggestions. I am looking into fun medic-alert bracelets for her... Thanks so much.
Rebecca

[Bernard]

Hi Rebecca, welcome to the forums.

I would suggest trying to contact your local Epilepsy Foundation Association chapter. They have a H.O.P.E. Mentoring Program among other things that might be helpful. Also, point Sarah's school nurse to their School Nurse Training page.

[Rebecca W]

Thank you so much for your suggestions Bernard. I checked out the links you gave me and have forwarded them to my brother (Sarah's Dad). I also contacted the nurse at my kids' elementary school and she directed me to Epilepsy.com. They have a section for kids and a good list of resource books available through amazon. I still would love to find an online chat room for Sarah so please let me know if you encounter anything of that sort. Again, thanks for you help, I will continue to monitor this site for helpful info for Sarah.

[Bernard]

I'm not a big fan of chat rooms, so I can't really help you there. I know that the EFA eCommunities has a forum category specifically for kids (teens).

[Rebecca W]

Having never actually been to a chat room myself, I can't say too much about them, but guess I better be very careful before sending my niece to one! I guess I really meant a forum or bulletin board or anything for pre-teens so that Sarah could find some support. Thanks again for your response!

[howdydave]

Howdy!

Bernard took all of the wind out of my sails!

I was first diagnosed with epilepsy when I was living in Massachusetts.
Epilepsy meds used to be free in Massachusetts, don't know if they still are, but that's something her folks ought to know (they probably already do.)

[Bernard]

Bernard took all of the wind out of my sails!

Ah, but you run a very tight ship. No one would be the wiser if you didn't let on.

[cmscribbles]

Rebecca,

This is my first post to the board. I joined just so I could send you this info! Sarah is lucky to have an aunt like you who is being so supportive

I just found this website and called and talked to the owner...read the "our story" section. She started making the jewelry for her daughter who has diabetes. I just ordered two of her ID bracelets for my teenage son, Robert. He is 17 and has had epilepsy since he was 2. I think you will like the selection.

http://www.aboutmejewelry.com/index.htm

There is always the medic alert organization too. You can pay to join and they keep a file of your medical info for emergency purposes. Personally, they don't have the selection that the other site has for teens...but the fact that emergency personnel can access the child's info is nice.

http://www.medicalert.org/home/homegradient.aspx

I will go through my library of epilepsy books and see if I have any I would recommend.

Best Wishes to all!
Love to Sarah!
Cindy[/url]

[Bernard]

Hi Cindy, welcome to the forum!

[howdydave]

Howdy Rebecca!

re: jewelry - I would suggest signing Sarah up with MedicAlert anyway!

If you don't like their jewelry, get some from someplace else and then have her MedicAlert ID number and the MedicAlert phone number engraved on the jewelry.

It is always good to have medical information available in case she can not speak for herself.

Once she has a MedicAlert ID number somebody can either write, call or go to the MedicAlert website and keep her medical information up to date.

[cmscribbles]

Dave,
Thanks for adding that. That is what I actually did for my son. I ordered from the aboutme jewelry site and had them engrave the medic alert 800 number and his medic alert member ID # on it.
Cindy