I so much want to be able to come here and say that she is much better and things are great. I hope that will be possible some day, but it isn't today.
The shaking is constant now. When she works to suppress it she gets exhausted easily. Sometimes it travels up her neck and head and the muscles there contract and release rapidly. It is the most bizarre thing I have ever seen. The neuro thought it was bizarre also. He even used that word.
It is not good when your neuro thinks your sx are bizarre.
She keeps trying to do things, even though her pain is at about an 8 most of the time. No doctor will give her pain medications to take for more than a week or so. I think it is inhumane, but the pain docs are adamantly stupid.
Her quality of life hoovers. She tries to do things and winds up falling - right now she has one leg with a sprained ankle and the other knee is about the size of a cantalope. The muscles in the leg with the bad knee are doing the contract and release thing today.
I have not enrolled her in school yet. I thought we were set up with the online school, but because she only did algebra last year they will not enroll her. Last year all of her docs refused to give us a letter limiting her school day. I was BLESSED to be set up with a teeny school district about 3 hours away (you get assigned to a school district that oversees attendance issues, etc...). The superintendent was very kind and caring and said it was perfectly fine if she only did one class and only did it on days that she could. We had to accept F's in all the other classes, but those will change when she does those classes. She did not pay any attention to Jessie's attendance. When she was able she did 90min-2hrs and ALL of her work and tests were A's.
At our last appointment with the pediatrician neuro he said he would give us a letter limiting her to homebound education and only 2 classes because the movement disorder and the migraines. Insurance will only give her 9 tablets of imitrex per month - she has 4-6 migraines a week so she is miserable a LOT. She also has midrin, which helps some.
I am hoping for the letter. Last year every doctor passed the buck to another doctor. The pain doctor said the neuro should write it, the neuro said the gp should write it, the gp said that the pain doctor should write it and the therapist said the school would figure it out themselves.
I HATE that she has all those F's on her record. It really bothers her, though she tries not to dwell on it. She also HATES that all her friends will likely graduate before she does. That hoovers, but it is what it is.
I tried all summer to get someone to work with us to set up this school year - most of my messages and calls got no reply or told me to wait until school started.
Anyway, that is where we are. I have a kid who fights crying, cannot lay flat and vibrates like a massager to the point she cannot stand or make her legs or hands cooperate. Even eating and drinking is difficult for her. She does her best to hide it from her father because he doesn't understand any of it and rarely is supportive. He is very depressed over not having a full time job so I don't push him too much to cope with her problems. When he focuses on them he gets so worried he cries - which upsets her more.
I may have to get nasty with the school district this year. I am praying it isn't needed. Good thoughts and juju are appreciated.
The shaking is constant now. When she works to suppress it she gets exhausted easily. Sometimes it travels up her neck and head and the muscles there contract and release rapidly. It is the most bizarre thing I have ever seen. The neuro thought it was bizarre also. He even used that word.
It is not good when your neuro thinks your sx are bizarre.
She keeps trying to do things, even though her pain is at about an 8 most of the time. No doctor will give her pain medications to take for more than a week or so. I think it is inhumane, but the pain docs are adamantly stupid.
Her quality of life hoovers. She tries to do things and winds up falling - right now she has one leg with a sprained ankle and the other knee is about the size of a cantalope. The muscles in the leg with the bad knee are doing the contract and release thing today.
I have not enrolled her in school yet. I thought we were set up with the online school, but because she only did algebra last year they will not enroll her. Last year all of her docs refused to give us a letter limiting her school day. I was BLESSED to be set up with a teeny school district about 3 hours away (you get assigned to a school district that oversees attendance issues, etc...). The superintendent was very kind and caring and said it was perfectly fine if she only did one class and only did it on days that she could. We had to accept F's in all the other classes, but those will change when she does those classes. She did not pay any attention to Jessie's attendance. When she was able she did 90min-2hrs and ALL of her work and tests were A's.
At our last appointment with the pediatrician neuro he said he would give us a letter limiting her to homebound education and only 2 classes because the movement disorder and the migraines. Insurance will only give her 9 tablets of imitrex per month - she has 4-6 migraines a week so she is miserable a LOT. She also has midrin, which helps some.
I am hoping for the letter. Last year every doctor passed the buck to another doctor. The pain doctor said the neuro should write it, the neuro said the gp should write it, the gp said that the pain doctor should write it and the therapist said the school would figure it out themselves.
I HATE that she has all those F's on her record. It really bothers her, though she tries not to dwell on it. She also HATES that all her friends will likely graduate before she does. That hoovers, but it is what it is.
I tried all summer to get someone to work with us to set up this school year - most of my messages and calls got no reply or told me to wait until school started.
Anyway, that is where we are. I have a kid who fights crying, cannot lay flat and vibrates like a massager to the point she cannot stand or make her legs or hands cooperate. Even eating and drinking is difficult for her. She does her best to hide it from her father because he doesn't understand any of it and rarely is supportive. He is very depressed over not having a full time job so I don't push him too much to cope with her problems. When he focuses on them he gets so worried he cries - which upsets her more.
I may have to get nasty with the school district this year. I am praying it isn't needed. Good thoughts and juju are appreciated.
