Hello..My 26 y.o. daughter has been going through autonomic dysfunction or neuro storms as they have also been termed. She has a diagnosis of spastic, quadreplegic cerebral palsy, profound mental retardation, chronic UTIs, seizure disorder, and a host of other issues. She, and our family, have been going through these episodes since August of 2012. She has these episodes monthly and they are usually brought on by either a urinary tract infection, yeast infection, or problems related to constipation. Any type of pain seems to bring on her initial anxiety, which results in changes in her sleep patterns. Her pulse and blood pressure rise, she has profuse sweating, rapid heartbeat, and extreme spasticity. Nothing seems to comfort her during these storms. Her neurologists and I have struggled with how to treat these symptoms. We are currently using Klonopine, Clonodine, and morphine when the spells put her into strider and she has problems breathing.
I have been blessed to have Mandy for 26 years but I dread that her remaining years will be filled with these episodes which are very hard to watch. I am desperate for any additional help you may offer and would even bring her to Vanderbuilt if need be.
Any help, advice you could give me and her doctors would be greatly appreciated.
Thank you!
Carrie Cobun-Stark
(304) 594 0715
(304) 288-9378 cell
(304) 293 2890 work