Hiya Sam.  Im sure by the time your baby is grown there will be even more medical progress in controlling seizures.  On an adult side, I started having seizures last year and have a wonderful suport system.  My daughter has ben great to me but she is also a full time college student and I don't want her saddled taking care of me.  I live in a nice building with 7 other families. 3 of them have a key to my apartment.  I also have a case manager who helps me with paperwork and making sure my prescriptions, medicaid and HUD recert paperwork is completed.  last time I had a seizure I realized my bills get late because for a few days I don't even know who I am, less the electric bill!  I like being organized and told her the next time I have one to please keep my mail in one place and help me write out the bills until I can do this on my own again. I am learning new ways as  go along.  I keep post it notes around until I am better to remind me of the things I need to do.  All these little tricks will be second nature to your son because he will be dealing with this on a regular basis.

 

I know as a parent its frightening.  My daughter had febrile seizures as a baby and whenever she was sick I would tip toe into her room and take her temp with an ear thermometer.  When she was really sick she stayed n bed with us.  I recently met someone who is not afraid of the seizures. I was more afraid or being embarrassed or scaring this man if I had one.  Well I did a few weeks ago and he was great.  I told him what to do and not to panic.  He was so great that if I had not bit my tongue so badly I may have slept on his shoulder even longer.  I bet if you spoke with someone who is the mom of someone who has seizures you may get more comforting advice for the now and present time.  Take care.  Lori

 

 

i had seizures since i was nine mos old went into a coma and almost died last time i had a seizure when i was 15 that was when they were changing me to another med i m 38 now and dont have any more  use to take meds 3 times a day now 2 times a day  my daughter is 9  she has had them since she was 7mos old and now on topmax which dr and i are weaning her off and keppra she has been seizure free for about 3 years now since we add the keppra i worried about her when she grows up too she also had autism global delay and exp lang disorder and as well as seizures 

 

 

cheryl

I started having seizures 18 months ago at age 47.  they are not that often but the early ones did alot of damage. Now I am not as scared and paying attention to the signals I get. I keep a seizure diary to help me. I type anything odd and keep a small written journal as well (I can type alot faster). I keep my medical information on the fridge and by the door. I have a system that when I have a seizure my book tells me to look at note cards. I try to be humerous so I can relax. If anyone has seen the movie '50 first dates' I start out my note card with 'sorry abou your brain - everything will be ok'. I have notes to look at my laptop with the password if I forget. It helps to see that I had a setback before and after a few weeks pretty much everything comes back except some memory during the seizure itself. 

 

I have wonderful neighbors. I am one of 8 families in here and we all help each other. If I do not surface a few neighbors have my key and will stop by or call. I have been reading alot about the SR dogs and would like to get one in a few years.  My daughter recently graduated from college and is back at home with me but I do not want to make her part of my system to rely on - she has her own life and I want to be independant.  she will be working full time in the fall and starting grad school but will be home with me. Of course she checks to make sure I am ok but I dont want her to feel like she has to do this.

 

I hope with time and technology we will have more warning signals either with medication that gets released in a patch if your brain signals a seizure is coming.  Life is alot better for seizure patients than years ago.  Lori

Dear Vickie,

I am kinda watching out for you here as I am an assistant of a couple groups.  I would delete your last message and email SamIAm personally with your phone # if you would like to give our your number.  Always in MSN Groups you never know if there are going to be "visitors" that come in and check the group out and ones that you will not trust.  I know with the MSN Groups and Epilespy ones in the past we have seemed to have alot of Mortgage Rate people want to scam the Epilepsy groups.  So just kinda want to watch out for you here as a friend.  After you know that someone is truly going to be a good friend to you then I would say it's ok to give out your phone number when chatting in the chat room, on messenger, or through a personal email.  All others hope this is a good message for all of you.

Jana