I put this here because there have been questions about neurologists, and I know other people have tic and tremor problems. If it needs to be moved that is OK.
Please keep Jessie in your prayers. The tremors have gotten even worse. Harder, more violent, more pronounced. Almost unsuppressable. She can suppress them for long enough to try to take a drink. Sometimes.
My child is having trouble eating and drinking. Spent most of last night and yesterday wanting to die. The pain is going to drive her out of her mind.
She has a pain doctor. Who seems excellent. I spoke to her this morning. She put Jess's lortab to the max it can go for the tylenol in it. It is barely helping. We have an appointment on Wed, so the increase is to try to get us through to then. We may end up in the ER though. The doctor has been owrking with me on a plan to get some real treatment from the ER.
She is falling. A LOT. Her legs shake when she walks. Her hands are painful, and very weak. Often they shake so badly she cannot open doors or put on shirts or pull up pants. She cannot take a shower unsupervised because she falls. It is just too slippery, even for a bath. She needs help washing her hair.
She is very dizzy. Partly an ear problem - had a huge wax build up, thought it was better but discovered last night it is not. This is leading to nausea.
I am so very angry. I want to go and punch her first neuro in the face. And her pediatrician. And her current neuro. First neuro still thinks there was nothing wrong with refusing to see us for months, then telling us to find a new doctor because he wanted out of an insurance contract.
PEdiatrician and current neuro SWEAR it is all anxiety. Pain doctor has had shared patients with this neuro and was visibly shocked that he will adamantly NOT help, openly shocked that he TOLD me as much. Of course this attitude came after a chat with the pediatrician who has blamed it all on anxiety. This neuro says that since she is female it cannot be anything other than anxiety and it is not worth his time.
The pain doctor (and nurse practitioner, both are great and work together) want us to see the dept head of the pain clinic on Wed and have changed our appointment. They clearly saw neuro problems and are ALARMED at the increase in problems. Esp as it has happened in just a month.
They like the neuro we are going to see in late Feb. Are going to send notes to this neuro asking that we be seen sooner. On Wed when we see pain doctor I plan to also go to the ER and stay until this neuro evaluates Jessie. Unless we go before Wed.
I am to call neuro tomorrow morning, first thing, to see if they will see her sooner on my say so. This neuro is experienced in pediatrician movement disorders. Whomever suggested wemove.org, thanks. I was able to get her name from there. Actually got an adult neuro name from there. That doctor's office said to send records and they would ask the doctor if he would see her, but also said that he did research with the pediatrician neuro for 10+ yrs on movement disorders. Shared a practice where she did peds and he did adults. They specialized in movement disorders.
Anyway, this has rambled. Upset stomach and been up for almost 40 hours. Really bad night.
Thanks for reading this. If you have a kid with tics or tremors yell scream and stand on your head until a GOOD doctor helps them. Jess started this in JUNE and still has had NO real help.
I had NO idea that tremors like this existed. None. Life is very very scary with this.
Please keep Jessie in your prayers. The tremors have gotten even worse. Harder, more violent, more pronounced. Almost unsuppressable. She can suppress them for long enough to try to take a drink. Sometimes.
My child is having trouble eating and drinking. Spent most of last night and yesterday wanting to die. The pain is going to drive her out of her mind.
She has a pain doctor. Who seems excellent. I spoke to her this morning. She put Jess's lortab to the max it can go for the tylenol in it. It is barely helping. We have an appointment on Wed, so the increase is to try to get us through to then. We may end up in the ER though. The doctor has been owrking with me on a plan to get some real treatment from the ER.
She is falling. A LOT. Her legs shake when she walks. Her hands are painful, and very weak. Often they shake so badly she cannot open doors or put on shirts or pull up pants. She cannot take a shower unsupervised because she falls. It is just too slippery, even for a bath. She needs help washing her hair.
She is very dizzy. Partly an ear problem - had a huge wax build up, thought it was better but discovered last night it is not. This is leading to nausea.
I am so very angry. I want to go and punch her first neuro in the face. And her pediatrician. And her current neuro. First neuro still thinks there was nothing wrong with refusing to see us for months, then telling us to find a new doctor because he wanted out of an insurance contract.
PEdiatrician and current neuro SWEAR it is all anxiety. Pain doctor has had shared patients with this neuro and was visibly shocked that he will adamantly NOT help, openly shocked that he TOLD me as much. Of course this attitude came after a chat with the pediatrician who has blamed it all on anxiety. This neuro says that since she is female it cannot be anything other than anxiety and it is not worth his time.
The pain doctor (and nurse practitioner, both are great and work together) want us to see the dept head of the pain clinic on Wed and have changed our appointment. They clearly saw neuro problems and are ALARMED at the increase in problems. Esp as it has happened in just a month.
They like the neuro we are going to see in late Feb. Are going to send notes to this neuro asking that we be seen sooner. On Wed when we see pain doctor I plan to also go to the ER and stay until this neuro evaluates Jessie. Unless we go before Wed.
I am to call neuro tomorrow morning, first thing, to see if they will see her sooner on my say so. This neuro is experienced in pediatrician movement disorders. Whomever suggested wemove.org, thanks. I was able to get her name from there. Actually got an adult neuro name from there. That doctor's office said to send records and they would ask the doctor if he would see her, but also said that he did research with the pediatrician neuro for 10+ yrs on movement disorders. Shared a practice where she did peds and he did adults. They specialized in movement disorders.
Anyway, this has rambled. Upset stomach and been up for almost 40 hours. Really bad night.
Thanks for reading this. If you have a kid with tics or tremors yell scream and stand on your head until a GOOD doctor helps them. Jess started this in JUNE and still has had NO real help.
I had NO idea that tremors like this existed. None. Life is very very scary with this.
