Jess Update

Discussion in 'General Parenting' started by susiestar, Jan 3, 2010.

  1. susiestar

    susiestar Roll With It

    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, 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.
  2. everywoman

    everywoman Active Member

    Gentle hugs for poor little Jess and poor tired mom. Living with a child in pain has to be horrid. I can't imagine watching her suffer and not be able to offer any relief or find someone who will listen! Praying for answers soon.
  3. tictoc

    tictoc New Member

    We'll be thinking of you and Jessie. There has to be some help out there for her. I hope you get some help this week.

    by the way, I'm a former Okie, myself.
  4. maril

    maril New Member

    Prayers being sent from me, too. I can't imagine how difficult this must be. Poor Jess. Crossing fingers that the neuro will get her in sooner.
  5. ML

    ML Guest

    Prayers are coming from this board Auntie as well. While I'm extremely angry to think of the current neuro, I'm holding onto hope that this new one will be able to help. It sounds like the research experience might be of great benefit. It is just wrong to allow a child to suffer like this. I'm so sorry, Susie. You're doing everything you can. Let us know if they can see you sooner than late Feb. Love and gentle hugs, ML
  6. TerryJ2

    TerryJ2 Well-Known Member

    Wow. I cannot imagine that a neuro would so blithely dismiss it all as anxiety.

    I am rattling beads and hoping that you get a grip on this thing ASAP.

    Poor Jessie. Poor you.

    I am so sorry.
  7. klmno

    klmno Active Member

    I'm keeping her in my thoughts. I'm sure this is incredibly frustrating both you and her both. Obviously I have no idea what the cause of this is but I can see that dr's don't know what to do for her if they can't find the cause. That's what I'd find most frustrating. Hasn't she had about every test there is? Can you find/think of a test she hasn't gotten that you could push for? Is she on any medications other than the one you mentioned?

    There is such a thing as "familial tremors" but I think I brought that up before and you said that no one else in your family/extended family has ever had this- correct? If that is correct than it wouldn't be that.
  8. susiestar

    susiestar Roll With It

    There are all sorts of tremors. I had no idea prior to this. No tremors in any but a few elderly relatives, and that showed up in their late 80's. Nothing of any sort like this prior to then. Lot of autoimmune stuff, but few neurological problems. Same for husband's side.

    We have had a couple of tests, the very first ones. To get an mri done they had to put her under general anesthetic, which is very rare. Usually they can just give a dmall dose of versed or other benzo, do the test with-no tremors and it works fine. She had to be put under like she was going to have surgery. Farther under than most kids at that. The doctor was surprised.

    The neuro discussed other tests with the endocrine doctor we saw. then he cancelled them with-o talking to us.

    thanks for the prayers.
  9. klmno

    klmno Active Member

    I don'typical teen want to scare you but has anyone mentioned whether or not it could be something like Parkinson's? I think it's rare for that to show up in children, but she obviously doesn't have something common.
  10. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm so sorry to hear she is not doing better and is, in fact, doing worse. She is in my daily prayers and so are you. I hope you are able to get in to see the neuro. quickly. Waiting till February seems impossible! Hugs to you and Jesse.
  11. susiestar

    susiestar Roll With It

    klmno, I am TERRIFIED of that. It is often on my mind. I figure we will find a way to handle whatever if we can just get decent medical help. I am very much afraid that something should have been done early to help/stop it and now it will be too late to make it all disappear. This is one of my biggest fears.

    If it turns out that we missed some window of time for treatment then I WILL get an attorney and sue the living daylights out of all 3 of the doctors who have brushed us aside. From the pediatrician who seems to be interfering with treatment with her own biases about females and anxiety to the doctor who wanted to get out of an insurance contract to this current neuro who just will not even address movement issues or anything except her epilepsy. The pediatrician is one of the most powerful docs in our town. I will make it part of my lifes work to destroy her professionally. After she speaks to our specialists they all seem to decide it is "just" anxiety and that therapy (therapist kind) will somehow fix this.

    Ever since we learned that Wiz had been abusing Jessie she cannot even have an ear infection that is not "caused" by anxiety. It is NOT the first time a doctor has suggested tests and then talked to the pediatrician and then cancelled them to recommend just talk therapy. I DO have records.

    Nuf of that bad energy. I am giong to sleep now if it is the LAST thing I do. Jess is finally napping!
  12. Shari

    Shari IsItFridayYet?

    Hugs and prayers for you all. Tell Jess i'm thinking of her.
  13. KTMom91

    KTMom91 Well-Known Member

    Prayers and hugs going out.