Thank you for all the sites and information. I will look into each of them to see what more I can find. We have believed our Pedi for so long that we just did basic research on what he told us. Now we are getting to the point that we NEED an alternative, things are simply not working as well as they did at first.
Is there a family history of tics, Tourette, OCD, ADD etc. or are your children the first to manifest these?
I really couldn't say if there is a family history. We don't know of anything like this on our side, there are some mild cases of ADHD and OCD, but nothing more than that behaviorally. The TS and SID was a total shock to us. I was assaulted and became pregnant with my DD. So there has always been an issue of not knowing what to expect or what would be genetic. As for worrying that my son would have the issues as well, I suppose it may be unreasonable, but it scares me just the same.
Do your kids have a history of strep infections?
Yes my both of them have quite an off and on history with strep, kidney infections and such. DD just had a pretty bad ecoli infection in her kidney's last month. She spent 2 days in the hospital and then returned for 3 more days to get antibiotics by IV. I do believe we had tested for PANDAS long ago, but I will double check this week.
I have always noticed big issues with too much stimulation. We had to stop going to the fair. All the noise, people and flashing lights would send her into an almost catatonic state. It was like she wasn't there, but her body would be out of control with the tics. We threw a surprise birthday party the year that they were trying to diagnose her tics and it was the worst thing we could have done, we had to send every one away and she and I sat on her bunk bed and opened all of her gifts alone with just a night light. It was the only way to bring her down.
She does have a 504 plan in place at school, but I don't think it is enough. We are pulling her out of public school this year and placing her into a private school for the 6th grade. She hates change, but I really don't see how she could function in our school system here. We did a tour of the public school and they are in a new class for each subject and it is up to the student to bring the correct materials for each class. I know that is normal for 6th grade, but there is no way she could do it. They informed us that they would not be holding her hands. If she could not keep up they would recommend the special education class. I was furious, but we had been fighting the public school since K to keep her out of special classes so it really didn't surprise me.