My daughter has CP,
wheelchair bound right side more involved. She is 18 yr old. Myoclonic seizure diagnosis at 3mo old. She takes depakote, klonopin. She now also takes medroxyprogesterone for amenorrhea. We first noted the first jerk in August -her left arm, sometimes left leg jerks with her head turning swiftly to the right at the same time. Episode lasts only seconds.
During 24 hour EEG only did 2 small jerks. Neurologist says they are not seizures. I was sure they were, looked very similar to startles she had as a baby that ended up being Myoclonic jerks/seizures. (Depakote has knocked those out completely.) The jerks she is having are so violent at times that she will throw whatever is in her hand(phone, glass of water,etc) She has sometimes up to 20 a day. She usually just ignores them and goes on with activity. The number of jerks vary from day to day. Lately many more.
She had a CT a couple weeks ago and there were no changes from 10 yrs ago. She cannot have an MRI due to rods in her back. I called her neurologist to tell him they were increasing- because there has been no follow up. (
pediatrician ordered the CT scan per my request) Neurologist says over the phone.... through his receptionist??? "They are psychogenetic and she needs to see a therapist"!!!! This neurologist has never been someone to brag about, but we would see him once a year and he prescribed the medications which was all we needed. But now we need him and this is what I get. grrrrr. A therapist? He thinks she is doing this on purpose? I don't really understand where he is coming from? any thoughts? His attitude is basically, "be happy with what you got" this is as good as it gets."
I did have an ER doctor I work with tell me he thought it sounded like "Hemiballismus". I have looked it up and it sounds like what she does. I am starting to wonder also if the hormone pills brought this on? I plan on getting a new neurologist and maybe getting a repeated EEG and stopping the hormone replacement that she would be due for in 3 months.(she just finished taking it in Dec and brought on period for Jan) Which is when we have noted the increase of jerks. There has been some weight gain over the last year and we have started weight watchers-
Just wanted to give as much info as possible to start, for anyone out there that something might click with and can help with figuring this out. I'm praying for wisdom. Thanks so much.