Two years ago when my daughter Taylor was 11 years old, the left side of her body including her lips went numb during class. She was sent by ambulance to John Muir Hospital in Walnut Creek, CA. They did an MRI and freaked out when they saw the AVM. Sent us by ambulance to Children's Hospital in Oakland, CA. Dr. Sun at Children's Hospital said that her AVM is inoperable since its large - Right Frontal Lobe Brain AVM, 6.5 cm with diffuse nidus (We got an angiogram) They put her on Keppra.
She has had these episodes about every six months for the past two years. End of last summer she had an episode (numb up and down the left side of her body) on and off for 3 or 4 days. They ended up taking her off the Keppra after having an EEG test. They did't think her episodes are technically "seizures". Happy she is off that since it made her "dull".
Interesting. She started having the episodes when she started puberty and for the past three months she has had them on or a day before or after she starts her period. Wondering if they are hormone related. The doctors at UCSF (where she is seeing Dr. Heather Fullerton) mentioned something about migraines.
She just finished a four day on and off cluster of episodes. Only 45 minutes each, one per day.
I would love to connect with anyone who has had anything close to what is going on with Taylor. My next idea is noting exactly what she is eating and when.
Anyone get numb spells?
Thanks! Britt