I took Jessie with me to the city today. I had an appointment with my rheumy and her pediatrician neuro is across the street. I was very persistent with them as we need ANSWERS NOW!
I had to return something at the mall and Jessie wanted to walk around. I stopped in Dillard's to visit a college friend who works there, and as we were leaving Jessie started shaking so bad she had to SIT DOWN on the floor.
I had pretty much HAD IT. I didn't want to leave the city because if we could get in it would be on short notice. Also, if they wanted us to go to the hospital the city has a pediatric emergency room and a full Children's hospital (this is very new - just 2 years ago it was about 8 docs, now it is a full hospital, though it shares things with the reg hospital!).
We went to the used bookstore we love. She got a cart and walked around. I got her an algebra book (NOT her fave!) and a couple of novels.
The neuro's nurse FINALLY called me at 1:30. She said that we should go to the primary care doctor. Primary care doctor had already said go see Neuro, we don't want to deal with this! I asked the nurse how I was supposed to go to the primary care when they have already said they don't want to deal with it.
I asked the nurse where the Children's hospital was (I wasn't sure which of the large hospitals it was in) and if maybe going there for tests and to start figuring this out would be a good idea??
She thought it was an excellent idea. Esp as our hospital in XXXX actually gave a child I know from thank you's school benadryl for a BROKEN ARM! That is nuts. It is all they want to do for any kid. Allergies play a big role, but come on, it is NOT a cure all!
We went to the hospital. Service was actually quite fast. 2 people in line ahead to check in, then we went to wait to be called. Less than a 30 min wait and we were in a room. The nurse talked to us, the doctor did a FULL neuro exam, then ordered blood work for electrolyts, basic blood panel and thyroid panel (FULL thyroid panel, not just basic level - doctor mentioned checking the parathyroid as well as thyroid), urinalysis and a CT scan of her head.
ALL of it came back "normal". They did NOT let me see the chart as I requested, says there is some policy and we can order a copy but the doctor gets in trouble if we look at the charts. It is a bunch of BS, but we were exhausted, I was in a lot of pain as was Jessie, and it wasn't worth the fuss. I will order a copy in the am.
They spoke with the neuro, and with the pediatrician. Told them both EXACTLY what tests were run and what the results were.
We are to make an appointment to see pediatrician on Wed. Must call at 8:00 am tomorrow to get an appointment (ER can't actually make appts for some reason).
So we are home. We know that none of the major stuff is wrong, including the muscle enzymes that would show if the spasms were destroying the muscles.
The docs DID she her shaking and in pain. Said it was clearly a problem but they had no idea how to help. Said we can keep trying the medications we have, and ask the pediatrician how to proceed. The doctor said that it was more a tremor than a seizure or spasm, though of course the muscles spasm when she is trembling. I am going to do research on tremors.
I am frustrated. I am somewhat relieved that it is not any of the really major stuff that would indicate an Emergency.
JEss slept on the way home. She was still sore, but when she woke up she didn't shake for about 30 mins. She was starting to think it was gone, and then it started again. REally hard.
I appreciate ALL your suggestions. I am not going to add supplements of any kind until we see the doctor. It is just not something I am comfortable with. We will meditate tomorrow and I will give her a massage to help with this.
Thanks for the prayers, sorry this is so long, and you are all great. Please keep praying that we can figure this out, and SOON - I don't like it when my baby hurts.
I had to return something at the mall and Jessie wanted to walk around. I stopped in Dillard's to visit a college friend who works there, and as we were leaving Jessie started shaking so bad she had to SIT DOWN on the floor.
I had pretty much HAD IT. I didn't want to leave the city because if we could get in it would be on short notice. Also, if they wanted us to go to the hospital the city has a pediatric emergency room and a full Children's hospital (this is very new - just 2 years ago it was about 8 docs, now it is a full hospital, though it shares things with the reg hospital!).
We went to the used bookstore we love. She got a cart and walked around. I got her an algebra book (NOT her fave!) and a couple of novels.
The neuro's nurse FINALLY called me at 1:30. She said that we should go to the primary care doctor. Primary care doctor had already said go see Neuro, we don't want to deal with this! I asked the nurse how I was supposed to go to the primary care when they have already said they don't want to deal with it.
I asked the nurse where the Children's hospital was (I wasn't sure which of the large hospitals it was in) and if maybe going there for tests and to start figuring this out would be a good idea??
She thought it was an excellent idea. Esp as our hospital in XXXX actually gave a child I know from thank you's school benadryl for a BROKEN ARM! That is nuts. It is all they want to do for any kid. Allergies play a big role, but come on, it is NOT a cure all!
We went to the hospital. Service was actually quite fast. 2 people in line ahead to check in, then we went to wait to be called. Less than a 30 min wait and we were in a room. The nurse talked to us, the doctor did a FULL neuro exam, then ordered blood work for electrolyts, basic blood panel and thyroid panel (FULL thyroid panel, not just basic level - doctor mentioned checking the parathyroid as well as thyroid), urinalysis and a CT scan of her head.
ALL of it came back "normal". They did NOT let me see the chart as I requested, says there is some policy and we can order a copy but the doctor gets in trouble if we look at the charts. It is a bunch of BS, but we were exhausted, I was in a lot of pain as was Jessie, and it wasn't worth the fuss. I will order a copy in the am.
They spoke with the neuro, and with the pediatrician. Told them both EXACTLY what tests were run and what the results were.
We are to make an appointment to see pediatrician on Wed. Must call at 8:00 am tomorrow to get an appointment (ER can't actually make appts for some reason).
So we are home. We know that none of the major stuff is wrong, including the muscle enzymes that would show if the spasms were destroying the muscles.
The docs DID she her shaking and in pain. Said it was clearly a problem but they had no idea how to help. Said we can keep trying the medications we have, and ask the pediatrician how to proceed. The doctor said that it was more a tremor than a seizure or spasm, though of course the muscles spasm when she is trembling. I am going to do research on tremors.
I am frustrated. I am somewhat relieved that it is not any of the really major stuff that would indicate an Emergency.
JEss slept on the way home. She was still sore, but when she woke up she didn't shake for about 30 mins. She was starting to think it was gone, and then it started again. REally hard.
I appreciate ALL your suggestions. I am not going to add supplements of any kind until we see the doctor. It is just not something I am comfortable with. We will meditate tomorrow and I will give her a massage to help with this.
Thanks for the prayers, sorry this is so long, and you are all great. Please keep praying that we can figure this out, and SOON - I don't like it when my baby hurts.
Last edited by a moderator: