D/Terry

[Guest guest]

Hi, Everyone........just having her O2 levels drop into the 80's is enough to warrant a C-Pap machine. Why won't the doc go with that information? Gareth's had his C-Pap since he was 15 y/o. It may take some time for her to get use to it, but it didn't take long for Gareth to realize that it kept him breathing and he wasn't waking up gasping for a breath.

Terry.....Gareth has always had a Dr J and Mr Hyde personality. I can remember telling a doctor when he was only 6 y/o, that I wouldn't want to be around him when he grew up and got angry!!! That's pretty bad!!! He was put on Prozac at age 6, which took the edge off, and at 10, we added the Risperdal to stop the SIB. Gareth's personality flowered from age 10 to 18, when he was dx'd with sine-Scleroderma. It's been down hill since. The aggression started four yrs ago when we went through 5-6 epilepsy meds because the doc said he had seizures. They really messed up him up. Then, we got him into an epilepsy clinic for a week of studies and they said he didn't have epilepsy after all, but pseudoseizures....and meds do nothing for them. Four yrs ago this July, he had a major reaction to Dilantin and Lyrica....a combination the Neurologist thought would help him since the Dilantin wasn't working by itself. Well, he went schizo. I was no longer Mom, but a robot who was going to kill him. It took 2 weeks before I could get within 2 ft of him. His thyroid shut down and his liver numbers shot upward. After that, we got him into the clinic. In hindsight, we know his blood pressure was dropping so low to knock him out. Last year was a bad one....very sickly, with 4 surgeries. I just don't know anymore........... Are they sure that has epileptic seizures? Gareth had horrible nightmares from one of the seizure meds but I don't recall which one. Has he been checked for Orthostatic hypotension?

Take care, Everyone.

Margaret

Mom to Gareth, 23 y/o, DS/ASD/OCD