help with scary epilepsy

Visitor (not verified)
anonymous user
Registered: 12-31-1969
help with scary epilepsy
4
Sun, 08-17-2003 - 7:37am
hi i have been on here before but its a while my son has quite a list of other physical, sensory and learning disabilites that all sound worse than they are he genrally gets on with life like the three year old that he is but he is having real trouble with epilepsy he is somtimes paralised with fear more often he gets very paronoid and has an unusual cry that everyone else thinks hes either laughing or wonder why he cries for no reason. im finding this realy hard to deal with how can a three year old be so paronoid that he thinks the slide in the park will hurt him.one minute hes busy playing the next his exppression changes and he starts to cry. he is on new med and the doc knows about this and is not worried. we have tried so many and been told that we may never be able to control his epilepsy i would like to hear from anybody who has experienced this or has any advice. with thankx
iVillage Member
Registered: 06-25-2003
Mon, 08-18-2003 - 11:27pm
I have no real advice here, because I don't know too much about this subject. My daughter has SID and has many fears too -mostly to do with noise. I can't deal with all of them. I usually try to be very happy, upbeat and reassuring when she panics because a car has started nearby (she is terrified of traffic when we are on foot). I hear her repeating my words to herself as she tries to be brave. "It's just a car. The lady sees us. She won't hurt us" It breaks my heart sometimes to hear her, but it seems to help her.

Some things I just can't help her with, so I try to protect her from them. She is terrified of the vaccum cleaner, so I get up extra early and vaccum before she wakes. I don't use the blender if she is in the house, and I let my hair dry naturally. I take her out of the house when dh mows the lawn. Yes avoidance, but I pick my battles.

Do you think his fears are made worse by the meds? Did you see that (Dateline?, 60 Minutes?) show about epilepsy and the special diet which can work for kids who don't respond to meds? It may be worth checking out if you didn't. I do remember the diet expert was a guy out of a big famous hospital in Baltimore. Try searching for more information on it if you haven't heard of it.

HTH

-Paula

-Paula

visit my blog at www.onesickmother.com
Avatar for sesamemom98
iVillage Member
Registered: 03-26-2003
Tue, 08-19-2003 - 8:35am
Hi,

The diet Paula is referring to is called the Ketogenic Diet. I saw the Dateline piece both times it aired, but I can't remember the gentleman's name. Here are some websites I found:

http://www.theketogenicdiet.com

http://www.stanford.edu/ketodiet

Or you can do your own search by typing in "Ketogenic Diet" into a search engine. I'm 33 years old and didn't start getting seizures until I was 10, so I don't know if it works. Good luck, and keep us posted!

Adrianne

Thanks to Kelly (mom2emsopmax) for my beautiful siggy! Photobucket
iVillage Member
Registered: 06-25-2003
Tue, 08-19-2003 - 11:17am
Thanks Adrianne. The combination of your memory-jog along with it being closer to 11:30 in the AM not the PM has enabled me to be a little more specific!

The dataline show was about a former Hollywood movie director Jim Abrahams, whose son Charlie had epilepsy and was nonresponsive to meds, and his battle to find help for the boy.


I found this article about a movie he made on the subject.

http://content.health.msn.com/content/article/26/1728_59067

and this is the doctor I was talking about

http://www.neuro.jhmi.edu/profiles/freeman.html

This is Charlie/Jim's site

http://www.charliefoundation.org/

HTH

-Paula

-Paula

visit my blog at www.onesickmother.com
Visitor (not verified)
anonymous user
Mon, 08-25-2003 - 12:21pm
thank you for your messages i will take a look on the web sites you have gave me. he`s not been too bad the last week or so. he tends to recover quick and is soon off doing his jobs or playing in his toy jeep. i had to laugh at him today on the phone to his grandad to see if he can go to their house, grandad says to him shall i come and pick you up then?? luke said "yea! its 124 mary road mate"!! in full yorkshire accent like he was an old cab driver, it was so funny. thanks again for the supportxxx

(ps that is not my addy.) (just in case...)