Posted by Donna (63.20.108.162) on August 25, 2001 at 23:14:01:
In Reply to: Kids with clusters posted by Elaine (E.T.) on August 25, 2001 at 22:52:16:
what meds is she (and you) on? Did she have a seizure problem before ch? Is she now having partial-complex seizures (a focal seizure)?
How long have you been having cycles? So many questions! Althought we don't hear of clusters within the same family very often, I was a cluster sufferer and so is my son, who is now 30.
I'm curious as to what her symptems at that age are. Like, what times of the day, how long do they last, how often in cycle. Was it a problem getting diagnosed?
I am so sorry that your child sufferers. It is heartbreaking to have to watch and not be able to comfort.
Be sure to check out the Family Services Team section by clicking on the OUCH Website, which you will find on this page, top left corner. It's a new service and you may find relief in talking to fellow supporters and sufferers who are offering support. There's a Cluster Kids section too, to help kids whos family member has clusters.
My heart goes out to you in a big way, mom.
Hugs to you,
Donna