8-10-08
when jailynn gets a new medicine dose and lasts 2-3 weeks with no
seizures her doctor calls that her honeymoon phase. Well with
Jailynns last dose change last month she went over 19 days no seizure
until yesterday. She had a seizure yesterday when we were at the Phi
delta kappa picnic. Then today she had 4 seizures. By bedtime she was
soooo tired and miserable. I definately need to call her neurologist
tomorrow and talk about changing or adding a medicine. Poor jailynn.
I wish we could do her Video EEG sooner then she could have her
surgery in december. Summer is better though cause i will have a
longer time with no school and she will probably be in rehab for
awhile after the surgery.
We were suppossed to meet a family from a support group i joined
today but the little girl has been sick, so we are meeting them next
sunday.
8-11-08
CRANKY!!!that has been jailynn so far today. I woke up at 6:57 am to
her crying and grabbed my slippers and went in her room. she was
laying in her crib at the end and when i turned on the ligth she
starting bawling! She cried while I changed her and on and off
through breakfast. This makes me pretty sure she had a seizure at
least one this morning. She always ALWAYS is happy when she wakes up
and calls out "UP UP" or "DADDY DADDY DADDY". I had to walk around
with her to calm her down, she loves walking. She had her
physical/occupational evealuation this morning at 9 am, but the place
screwed up and only scheduled Physcial therapy. When we got there i
had to keep strolling her in the stroller ort she would cry. The when
we went in with the therapist jailynn screamed and cried the whole
time unless i let her walk and it was a small space s o i had to hold
her hand and the therapist was trying to ask me questions.
I scheduled for her to go on monday aug 25th but that conflicts with
her OT that comes to the house, so i have to talk to her OT today
when she comes. It also is awful close to my appointment with my
medical doctor. I really need to see him too. but i probably have to
cancel my appt. I called to check for cancellations but they didnt
have any.
I called Jailynns neurologist office to try to get him to call me to
talk about her seizures the past 3 days and maybe a new medicine, but
he is away all week on vacation. The secretary is so rude too. But
there is a doctor covering for him but she is not in the office right
now. I left a message and she is suppossed to cal me back. Im sure it
won't be til the end of the day (after 6) thats how it normally is
with them.
8-11-08 night time
So another neurologist called me back, actually between 12 noon and 1:30 but i missed the call on my cell phone, i d not know why he didnt call my home number. I left the home number. I called him back and left a meassage and finally he called back around 3pm. Dr Hartman said to use atavan (spelling) for 3 days, but the pharmacy didnt have it so he called in valium solution/ diazapam instead. He sent use for blood tests to check jailynns liver and said when he gets the results he will call in Depakote. He said that when Dr. kossoff ( her regular neurologist) comes back from vacation that he could choose to wean jailynn off of one of her other meds. These meds are gonna make her so sleepy. I have choosen to give the new med when we get it and the diazapam rigth before nap and right before bed, so that it will not affect the times she needs to be awake hopefully.
Hopefully this all helps her alot. Getting bloodwork was not fun. I got there 30 mins before they closed and we were the last ones out of the lab, i don't know why the made us wait so long, because there were others that got there after us.
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