My autistic daughter has epilepsy

[Maresa]

Anyone one else have kids whom are autistic with seizure disorders? Caitlin suffers from temporal lobe focal seizures. These are similar to petit mal seizures aka absense seizures, only they last longer than absence seizures do. (appx 1-2 minutes per seizure) when Caitlin has these it appears as though she is spacing out on us. Just wondering if this type of epilepsy is common with autism, seems to me it may be?

[AutMom]

"Seizures: It is estimated that 25% of autistic individuals also develop seizures, some in early childhood and others as they go through puberty (changes in hormone levels may trigger seizures). These seizures can range from mild (e.g., gazing into space for a few seconds) to severe, grand mal seizures."
http://www.autismwebsite.com/ari/

[Alex's MoM]

Yes,

My son has seizuers that have started in his puberty. He has had 3 in total. As a child he had none. I have not witnessed any of them. He is now on Dilantin for the fear that will escalate with out it.

Is your daughter on medication?

[Maresa]

We were prescribed tegretol, however decided that the health risks seemed far greater so she is not taking it. However this past year we were informed that in her right anterior region there is a eptolegenic region in her brain that puts her at extremely high risk for developing grand mals. Therefore her pediatric neurologist prescribed us medicine to inject in her bottom in the event of an emergency. He really wants me to consider maintenence medicine because of this possibility. Very scary stuff!!! :(

[lcarveth]

I have a 13 year old son with some signs of high achieving ASD who developped seizures with status without warning 4 years ago . I think that it is right to be wary of jumping for the AED's before you have carefully considered the alternative options and , even if they do work, their possible side effects . Many people are desperately trying to find alternatives . Look at the epilepsycured yahoo group for inspiration. There is an interesting article Autism, Puberty and the Possibility of seizures by Stephen M Edelson on www.autism.org/seizures.htlml


I am very interested in what your doctors gave you to inject in the event of a seizure. I am in ther UK and i am not allowed to use anything except diaziapam rectally or midazalam in the mouth . However I find that the paramedicals use of intravenous form of the same drug brings my son out of status seizures. So please would you tell me what you have been given?

liz

[brandi benson]

We were prescribed tegretol, however decided that the health risks seemed far greater so she is not taking it. However this past year we were informed that in her right anterior region there is a eptolegenic region in her brain that puts her at extremely high risk for developing grand mals. Therefore her pediatric neurologist prescribed us medicine to inject in her bottom in the event of an emergency. He really wants me to consider maintenence medicine because of this possibility. Very scary stuff!!! :(


I have a 6 yr old son and he also has to take the med (diastat) to stop his.But his are really bad he has had them to last over an hour and he was prescribed tegretol it didnt do him as bad as some of the others but none of them help him we took him off of them to see if they were helping or hurting him and he still has the same amount of siezures as always and they are just as bad

[lcarveth]

We were originally frightened into accepting medical advice to use AED s [first tegretol and similar and then topomax] because of prolonged seizures for which for son sometimes needed medical help to come out of. However 5 years down the line and a lot of seizures later we are currently gradually withdrawing the AEDs as we really don't think that thet have helped and suspect that they may have provoked seizures in certain circumstances.

We keep our son on a really good healthy diet; use supplements and are looking into non drug alternatives. For alternative non invasive seizure control we bag pans together and if that does not work we use lobelia inflata which todate has been fully effective.

I am always curious why epilepsy and autism seem to go together. Also do more autistic epileptics have a tendancy towards prolonged or status seizures??? Any comments would be appreciated.