gavman

Hi,
I to have a 7 yr old with E. My husband and I started to notice differences in him around the age of two. We could not quite put our finger on exactlyt what it was. We would talk to the pediatrician about it but were always told "he's still in the low end of normal" or "kids develope at different rates". Then when he was four he "passed out" out of the blue. An EEG was done and that was the beginning of our E journey. Three years into it and we are still frustrated and confused as to what is actually happening. We will be seeing our 5th pediatric neurologist in January and our son is scheduled for his first VEEG next Wednesday. I Pray this provides some more answers.
I'm also reading "The Out of Synch Child" by Carol Kranowitz and also recommend (if you haven't read it already) "Seizures and Epilepsy in Childhood" by John Freeman. Both have been very helpful.
Our son does receive occupational therapy, physical therapy, speech therapy-for sensory processing, memmory, following directions, etc... rather than actual speech issues. He also has adaptive PE twice a week. All of these are provided through the school. We know they are helping him, but at this point, it is not enough. We are schedules for an IEP (individual education plan) with the school this Monday. We have had several IEP's to date, but this one is to address the possibility of our son having an aid in the classroom. I don't know if you have ever had an IEP for your daughter, but these meetings can be intense to say the least. There are usually 8-12 people there, not including myself and my husband. Everyone from the principal, school psychologist, therapists, teacher, program specialist, etc...
So far, we have not had to hold our son back a grade, but he is only in first grade. We did wait an additional year to begin kindergarten. The learning issues we are experiencing are things like getting him to stay on task, attention problems, being able to follow simple directions. He also has some gross/fine motor issues. He falls out of his chair frequently, drops his pencil/crayon, has difficulty coloring/cutting. He is able to do what he is asked to do, it just takes him SOOOO much longer than the other kids. And he needs constant redirection from the teacher to complete any given task. If he feels he is falling behind, he becomes very upset and then it is extremely difficult to get him to complete his work. He is very emotional, cries easily. I think he feels overwhelmed by school and the pace of first grade. Especially since he requires so much additional help. Help that the teacher is not able to always give at the time he needs it. She has 19 other kids after all. One of the truly frustrating parts in this is convincing the school that he really does need this help. They have run countless tests on him, all coming back in the low-normal, & normal ranges. But as the therapist and teachers say, none of the test reflect how long and how difficult it was for him to complete them. When you have a child that on paper tests normally, they can't diagnose him with a learning disability. We are fighting this. If his epilepsy is causing him to zone out, even for a second or two, it greatly affects his day and ability to stay on task.
We have also consulted with a neuropychologist and are looking into having our son tested. A neuropsychologist testings go way beyond what our school district can provide. We hope this can give us a more detailed picture of what type of help he needs. I think it goes much deeper than what the school can address. This will be a battle with our insurance company, I'm sure.
Well, I hope I've given you some helpful information here. I know I can ramble on. I hope you are able to find the answers you need for your daughter. It's not an easy road. Let me know if I can help any further.
Take Care,
Cris