I feel pretty blessed to have such a wonderful neurology team for my son. We have never been seizure free for a year. We have had a couple Seizures this year due to med mistakes and episodes of being sick. We know the reason for the small seizures. The meds are working to control the seizures. This is the first time we are super happy with the meds and no eegs! I also learned a lot more about things while I was there.
We know that my son has multi focal seizures and since he is a teen and hormones are flying the seizures are starting to transition. This can mean that they are going to become more focal. The seizures we typically see now will probably be the ones he has as an adult. The part of the brain that it is affecting is the area for speech. We also talked about the part of the brain where he has the most trouble with writing. He can’t write his thoughts to paper. He can’t make them complete. Not sure how to fix that. That is work in progress.
She also mentioned that in todays world most instruction books and stuff you see are geared toward 5th grade. When I said he was at a 4th grade reading level she was happy. She said lets shoot for 6th. I said by this time next year or sooner he will be a 5th grade level. I am that determined to see him gain more. The reading program we are working on seems to be a good fit for him. Therefore I believe that this will be of big help to us.
I didn’t even realize that next year he turns 17 and soon we will start to transition to a adult doctor, but we have until he is 21. We go back in 8 months. Then we will get a referral for another neuro pysch. We need this to determine if guardinship is needed. I believe it will be needed. It’s something we openly talk about. We don’t want any surprises.
I had a lot of positive things to say this visit. There are more gains then I realized. We are focussing on his interests and building from there. I want to try to find something he can and loves to do in the adult world. I am hoping once we are doing with 3D Video Animation and HTML that he will continue on into maybe learning how to make apps. I never thought he could retain this stuff but he has literally been blowing me away. He is doing very well in these subjects.
The neuro psych that we saw recently was terrible. She said he would never go to college. You know what he may never be able to get a 2 year degree but he CAN surely take classes that he could earn a certificate for. Where he doesn’t need the unnecessary classes.
It made me feel good that I was on the right track and was made to feel that I am doing things right. We even talked about life skills and transition. I just feel real confident about things for once. No frustrations, and no questions. Sure there are things I question but only time has those answers.
My overall thought here on this post is NEVER let anyone tell you or your child that they can’t do things. Sometimes even the impossible can happen! Determination to prove someone wrong that things can be done. Don’t every doubt and always look at the abilities!!
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