PDA

View Full Version : Looking for parents with autistic children in their twenties now that have seizures


LAWozniak
11-13-2006, 10:43 AM
My daughter is 24 years old, lives home with me and attends a Day Hab Program for Autistic adults. She has terrible grand mal seizures and drop seizures that last about 4 1/2 to 5 minutes and she gets them once a week or more often. They are taking such a toll on her body. Her seizures are so intense they can rupture all the blood vessels in her face and eyelids; cause projectile vomiting many hours after the seizure; she doesn't eat anything for 48 hours after her seizures, etc. For a period of 6-7 years I tried about 13 different anti seizure meds with the instruction of neurologists and then combinations of sseveral of them, all to no avail. Not only did she still have the same intense seizures at the same time frame for the same duration, she also had terrible side effects that made her slam her head into the floor, or the walls or shove her fists in her eyes or she simply did not sleep for 40 hours at a time. So seizure meds are not our answer. But now they are increasing in frequency and I miss at least one day a week from my job so I miss getting a full paycheck, the pressure from my superiors was awful and I had to take Family Medical Leave so they couldn't fire me when I'm off to care for her, but mostly, I need to help her. She is 204 pounds, non verbal, functions at the level of an 18 month old, is completely mobile. Neurologists don't even want to follow her care since she doesn't take anti seizure meds; physicians have a difficult time assesing her since she doesn't speak so she can't give them feedback....where do I go for help? Try B6 and magnesium with DMG? I don't know. Please give me some suggestions?

Isabelle
11-13-2006, 01:07 PM
Have you researched Chiari? Keggy, another parent in this forum has a daughter with chiari and is an expert. To rule out Chiari she needs a MRI.

Anything that causes seizures is related to the brain starving off blood/oxygen.
If she doesn't have a brain tumor. Did she has an CATscan or a MRI?

About her weight. Is she taking Risperdal? Or, is she taking any kind of Benzodiazepines? What other medications is she on? If any.

My son, minimal verbal or non-verbal, (originally "autistic features") now 32, developed seizures, violent behaviour and self-injurious behaviour from antipsychotics, Benzodiazepines and anticonvulsants. He never gain excessive weight, always skinny, too skinny. For over 2 years he is in my care and almost 4 months off all meds and slowly coming back....if he ever is going to come back, but we are hoping.

There are like 120 metabolic disorders that could cause seizures and to gaining weight. Check Inborn Errors in Metabolism.