Yes - I live in Yakima.  We're a young e-list...started just a couple of months ago.  A couple of other people on the list live in Yakima, but all are welcome!  We have a small group of people who meet in Yakima...used to be once a month, but busy schedules easily get in the way.  We're trying for once every 3 months now.

 

Please tell my about your son's epilepsy.

 

My daughter (who just turned 11) has been having seizures since she was 10 months old.  She was first diagnosed with febrile seizures (which she only had when she was sick with a fever).  This kind of escalated to whenever she played too hard and her inner core heated up, she would have a seizure.  Then she was put on drugs, and we went through a really bad phase when she was toxic on valproic acid (depakote), and lamictal was added.  At this point she was having up to 3 head banging (awful, intense, grand mal) seizures a week and had become so ataxic (dizzy-couldn't even walk) from the lamictal and her white blood cell count had dropped to scary levels (from the valproic acid).  We spent 4 days at Childrens hospital in seattle, which actually turned out to be a blessing.  The hospital was full, and we ended up in the oncology ward.  After seeing what I saw there, I came out with a renewed attitude and felt that we could face anything.  Things calmed down a little bit, and the next several years were spent in fear of the next seizure....I'm always in fear of the next seizure...and it always comes at one time or another.  Sometimes they were a couple of weeks a part, sometimes a couple of months, sometimes several months.  The last couple of years, it seems like a couple of times a year she has a cluster of a few seizures.  I think we're in a good spot, but having no seizures is always our goal.  She had one in February and one in March.  Chelsi's trigger is, without exception (ok, the exception would be when she was on too many of the wrong type of drugs) her inner core heating up, whether it is by playing too hard or having a fever.  It's hard to "let her live her live" and be a normal kid.  She's at the age when she can't have Mommy hanging all over her telling her to slow down, take a break, etc.

 

She is a little slower mentally than most kids.  We held her back in Kindergarten, she has an IEP at school and used to be in special ed about 1/3 of the day.  She was not challenged and I insisted she be put back in mainstream classes, which has been a huge success.  She's getting straight B's!  She does get some extra help, but I couldn't be happier.  Her cognitive skills are slow.  It's hard for her to, for example, read a story problem in math and make sense of it.  Seems like every day has a  new challenge.

 

Well, thanks for listening!  I guess it helps me to tell her story, too. 

 

Take care and have a great weekend,

 

Sue