My child was diagnosed with AS at age 7. We did not medicate for a while, hoping to explore other options. The AS got progressively worse and she started on Ethosuximide a year later. She suffered some annoying side effects (stomach issues, headaches, etc.), but for the most part, the AS has been controlled. We are in the process up upping her dose because her eeg showed 2 seizures (they could not be seen outwardly). She does suffer from some confusion sometimes (I am thinking this is a seizure) and her memory is horrible. She is almost 11 and does horribly in her schoolwork. I am currently in the process of yet again having her academically and psychologically tested to see what can be done, because she just does not retain any info. She is homeschooled so I work with her constantly. If she was in school, and IEP or 504 wouldn't help. She just can't hold onto the info.
One thing that I am really concerned about right now is the dyes that are in her medicine. For the life of me, I cannot understand how the FDA can allow dyes in an anticonvulsant drug, while dyes are banned in other countries. We avoid it in everything else she ingests. My daughter does get headaches often and in speaking with other parents who have children on this medication, it seems this might be the common thread as they suffer from headaches as well.
What can be done? Is there a way for me to raise awareness and start some kind of campaign to get this changed?