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Hello My name is Heidi im 26, I have was born with Epilepsy, however it did not make its grand appearance until I was 10. The kind of epilepsy I have I only have them at night (myoclonic-tonic noctornal juvinille epilepsy) But at this point I am in fear I will have another one at any time. I am taking topamax and have had them under control for well over 1 year, possibly 2, I cant remember the last time I had one? I joined this forum about 2 months ago after my bi-yearly neurologists visit that left me on edge...
I went to go see him and I said what happens when I want to have children he said nothing, you continue to take your topomax (plain as that) I said what about birth defects? He said there is a small risk of retardation (plain as that, no further info) I had every horrible thought racing through my head!!! I came back to work looked up the epilepsy foundation, and found this group, and found that there was
going to be a womens confrence in just a few weeks. I went and it was a HUGE wealth of information. I would be more than happy to share all the info I got from that confrence. Also I am in the process of changing neurologists. Dr Vossler who use to be at swedish was one of my original neuorologists is now at valley medical in renton and he was at the confrence and is specializing in epilepsy in genetics. From what the confrence explained there are many people all the time that have children and lead wonderful lives, so I guess I should feel at ease, however I am still scared. what if I am the 1-7% that faulters and has something wrong? Well I guess knowledge is power and I am thankful I am not reckless and dont ill-prepare. If it was several years ago I am not not have cared. One thing they did stress at this confrence that really stuck out in my head is that all women really need to be on a folic acid of some sort,
especially if we plan on having a child.
Please let me know if you would like to meet to get a copy of the packet of info, or I would be happy to make copies and send them to you, or if you would like to chat more in private, my email is hwohrma23@...
Thanks
Heidi
lllynn01 <LMEvans926@...> wrote:
lllynn01 <LMEvans926@...> wrote:
I just wondered how many people on this group actually have Epilepsy
themselves? I am looking to dialogue with adults who are dealing with
Epilepsy on a daily basis. I'm curious about things like, are your
seizures under control? How often do you typically have them? Do you
find yourself constantly wondering where and when your next seizure
will hit? What about families with young children? How do you deal
with the possibility of having a seizure when alone with your kids?
Pregnancy issues, etc. I live in the Seattle area and you'd think
there would be some kind of support group locally, but I haven't found
any thus far. Thanks, in advance, for your input.
Lynn
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