Hi guys I am back here again after a break and a lot of things going on.
I will just give some background for those who don't know my story.
I was diagnosed with Tuberose Sclerosis Complex at approx 6 weeks old, long story short, things have gone well and I am seizure and medicine free and have been for the last 9/10 years.
It gets complicated as I go on because both my boys (mr 8 & mr 5) also got the "TSC" gene and as a consequence there are some pretty challenging things to deal with.
Mr 8 has Autism,ADHD, Intellectual disability (2-3 year old mental capacity)and seizures.He is about 80-90% non verbal.his seizures are all over the place, he has had absence,Tonic clonic, drop attacks and grand mal in the last 5/6 years, he has tried 11/12 meds in that time and we have considered the ketogenic diet, unfortunately it's not for him
We are now in a position that after an MRI that there are 7+ lesions that are causing the seizures and in consequence he is having a video EEG in preparation for the possibility of surgery.
If there is anyone who can offer any insight into the procedure and any personal stories would be great!
Mr 5 has high blood pressure and language delay but thankfully he is stable and in a good place.
Thankyou for reading
I will just give some background for those who don't know my story.
I was diagnosed with Tuberose Sclerosis Complex at approx 6 weeks old, long story short, things have gone well and I am seizure and medicine free and have been for the last 9/10 years.
It gets complicated as I go on because both my boys (mr 8 & mr 5) also got the "TSC" gene and as a consequence there are some pretty challenging things to deal with.
Mr 8 has Autism,ADHD, Intellectual disability (2-3 year old mental capacity)and seizures.He is about 80-90% non verbal.his seizures are all over the place, he has had absence,Tonic clonic, drop attacks and grand mal in the last 5/6 years, he has tried 11/12 meds in that time and we have considered the ketogenic diet, unfortunately it's not for him
We are now in a position that after an MRI that there are 7+ lesions that are causing the seizures and in consequence he is having a video EEG in preparation for the possibility of surgery.
If there is anyone who can offer any insight into the procedure and any personal stories would be great!
Mr 5 has high blood pressure and language delay but thankfully he is stable and in a good place.
Thankyou for reading