Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
I'm new and need support.....
Thu, 12/02/2004 - 07:24Comments
RE: I'm new and need support.....
Submitted by jackieoh on Tue, 2004-11-23 - 10:55
Hi!
I am sorry to hear about your daughter, I have experience from both my sister and husband as well as many children in my school (I teach children diagnosed with autism and they frequently also have epilepsy). They both tap out on medication after a while. That is, the medication needs to be adjusted, for my sister this usually works for my husband once he has a seizure on any medicine it doesn't matter how much he is on he has to change to a new medicine because it will no longer work for him.
I think you may want to consider finding a comprehensive epilepsy center in your area. I am not sure where you live but in New York there a few good ones. They specialize only in epilepsy and related things. Since my husband has found NYU comprehensive epilepsy center he has never done so well. As a matter of fact he had brain surgery on September 27th and has been doing well since.
I wish you a lot of luck and agree that you should call the neurologists office immediately, do not wait for your appointment.
Good luck.
Jackie
Hi!
I am sorry to hear about your daughter, I have experience from both my sister and husband as well as many children in my school (I teach children diagnosed with autism and they frequently also have epilepsy). They both tap out on medication after a while. That is, the medication needs to be adjusted, for my sister this usually works for my husband once he has a seizure on any medicine it doesn't matter how much he is on he has to change to a new medicine because it will no longer work for him.
I think you may want to consider finding a comprehensive epilepsy center in your area. I am not sure where you live but in New York there a few good ones. They specialize only in epilepsy and related things. Since my husband has found NYU comprehensive epilepsy center he has never done so well. As a matter of fact he had brain surgery on September 27th and has been doing well since.
I wish you a lot of luck and agree that you should call the neurologists office immediately, do not wait for your appointment.
Good luck.
Jackie
RE: I'm new and need support.....
Submitted by e_nuffofthis on Mon, 2004-11-22 - 19:29
Hi Pink:
Yes, I've heard and experienced this myself with my child. He has partial seizures, however, but I don't think you should wait two weeks. You should call and let them know what is going on. They may want to increase the medication. Have you had levels done yet? If not, maybe you can question if they want to get that done now. The first route they usually take, as long as there is "room" (level not too high), is to increase the med. If that doesn't work they may try to add another med or to try something else. It's important to gain control as quickly as possible so that things don't get out of hand and she does not have another GM.
Hope things go well. Hugs.
Hi Pink:
Yes, I've heard and experienced this myself with my child. He has partial seizures, however, but I don't think you should wait two weeks. You should call and let them know what is going on. They may want to increase the medication. Have you had levels done yet? If not, maybe you can question if they want to get that done now. The first route they usually take, as long as there is "room" (level not too high), is to increase the med. If that doesn't work they may try to add another med or to try something else. It's important to gain control as quickly as possible so that things don't get out of hand and she does not have another GM.
Hope things go well. Hugs.