Overwelmed with many questions

[Guest guest]

Adeline is still having problems, I thought they had stopped, but they haven't. She is having 1 or 2 grand mal seizures every week to 2 weeks. Her Neurologist is upping her drugs, but still with this on going for 5 weeks, it is still not helping her. She is on Phenobarb, Lamictal, Zonegram and Clozapam 2-3 times a day. Every time she has a Grand Mal we have to go to the ER (doctor recommended), but Diastat doesn't even really work. She doesn't stop until she is given IV drugs.

She also has Autonomic Nuropathy, her temperature is always fluctuating, but the last 5 weeks it has been 100.3 or higher every day. Tylenol or Motrin isn't even bring it down. She has had several labs ran, but they say there is no reason for the temperature to be that high everyday. Her temperature is always changing but it has never stayed that high for days at a time. She is more lathargic, and isn't her normal happy self, but still isn't acting sickly either.

Does anyone have any suggestions, I am so worried about her. I am also 6 months pregnant and the stress from her Mito lately is putting my health and our new baby at risk. Please any suggestions would be greatly appreciated.

Heidi Payton

mommy to (5), Adeline (3), Mitochondrial Myopathy (non-specific), Autonomic Neuropathy, Epilepsy (Grand Mal and Myoclonic), Asthma, Allergies, Speech and Developmentally delayed, Logan (2) and number 4 due June 17th