Update on Jessie

Discussion in 'The Watercooler' started by susiestar, Aug 25, 2010.

  1. susiestar

    susiestar Roll With It

    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.
  2. klmno

    klmno Active Member

    I'm sorry to hear this. I can't remember- have they done a MRI or CTscan on her?
  3. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I am sorry she isnt any better or they arent getting closer. I saw something recently on TV and thought of you...it was a man who started getting some shaking and paralysis. It ended up being a sodium/potassium issue. Also it normally shows up in the first two decades of life but it didnt show up in him till he was 40 which was odd. It was extremely painful for him but one thing that did help was to keep glucose tablets with him at all times. Im pretty sure it was a mystery diagnosis show.
  4. susiestar

    susiestar Roll With It

    They did an MRI with her under anesthesia. They saw something on it but the endocrinologist said it was supposed to be there in kids so he could do nothing for her. He suggested we see a movement disorder doctor but apparently there are no pediatrician movement disorder docs in our state.

    My parents are going to pay for us to go to Dallas for her appointment - mom may even go with us if I want her to. Not sure on that, but she can't be worse than husband who will moan and groan about everything we do that costs anything. He is very scared by any illness and does NOT cope well. He gets upset when I ask questions, esp if the doctor doesn't like them (the pediatrician neuro we got stuck with seems to HATE questions, esp ones that are well thought out and logical. He gets very very condescending when I ask questions, esp when I don't stop asking them until I understand why he is doing what he wants to do - which is mostly nothing.)

    I will make sure they test her electrolytes at her next doctor appointment in case it could be that. Sometimes her legs just don't want to work or she has trouble standing up unless she braces her arms on her thighs in a sort of bent over posture. It predates the tremors by about 4 months.

    At this point I will try anything. Earlier today she was in tears because it hurt so bad she wanted to die. It breaks my heart. Every therapist we have seen that does not work at Childrens and has NOT seen the file that says it is "just" anxiety says that this is NOT anxiety and that any anxiety is caused by the shaking, not causing it. Even when I tell them what the Children's therapist and docs say they don''t believe it. We have 3 tdocs who have told us this! (When the first therapist the hospital recommended said it was not anxiety caused the docs insisted we needed to see a better qualified therapist and had us see someone else. The new therapist agreed with the first one, which seemed to infuriate the pediatrician neuro.)
  5. Star*

    Star* call 911........call 911

    I'm sending all my Auntie Star hugs to my girl. THIS has gone on TOO long. SHE NEEDS A HOUSE type doctor NOW. HUGS SWEETIE.
  6. susiestar

    susiestar Roll With It

    If I could find a House type doctor I would sell a kidney to get her there. Not kidding in any sense of the word. They couldn't take it out in a bathtub though. It would have to be a hospital - I cannot handle the pain with-o drugs. But they could still have the kidney!!
  7. Marguerite

    Marguerite Active Member

    How long has she had these symptoms now? How has this been progressing?

  8. susiestar

    susiestar Roll With It

    Marg, the shaking started last April or May (in 2009). It was just her lower torso at first. By late May she told me about it and I called her neuro - and never heard from him. In June it was her entire torso, her arms and legs. The shaking movement is caused by the muscles contracting and releasing on their own. By August it was lasting for up to4 hours at a time, and happening at least 3-4 times a day. Keeping a diary of her activities, food, medications, whatever revealed NO clues about what triggers this.

    It just keeps getting worse for her. Right now she has to suppress the shaking to eat, speak and even to walk a lot of the time. She cannot lay flat because the muscles around her chest are so tight it gets hard to breathe because the muscles don't let the lungs fully inflate. All the docs did for this was to have her use albuterol if it happens.

    We have been to 3 pediatrician neuros, each of which is determined to figure out the puzzle at the first visit, then they talk to her former pediatrician and suddenly the diagnosis is anxiety. This has happened with her migraines, her bad periods, and just about any other health problem in six years. She had strep throat and the doctor first told my mom it was just a symptom of her anxiety, not an infection!! My mom still insisted the doctor look at Jessie's throat and culture it (I was in the hospital with cellulitis when it happened 2 yrs ago.) - lo and behold it was strep throat causing her sore throat!!!!!

    Our current neuro is one of the last ones in our state. At the first appointment with him he came in with a nurse practitioner and FOUR medication students. each one wanted to evaluate Jessie - she felt like a sideshow freak! At this appointment I asked the doctor if it was possible this was a movement disorder. He SHOUTED at me that it was not and I was NOT to bring that up ever again!!! I was furious but he is our last resort (he is very qualified to treat migraines, and is the pediatrician migraine specialist for OK and Kansas and part of Missouri) and there was little I could do at that point. Fast forward to our last appointment. The same doctor who shouted at me asked if we had been to Dallas to the movement disorder specialist!!!!!!!!!! He wanted to know why we waited so long to make an appointment with this specialist!!! I was floored, totally unable to speak with my mouth hanging open like a gaping maw! I was also so mad it took a couple of minutes before I could say anything to him.

    Jessie is in incredibly pain - imagine having your muscles exercising all the time with very few breaks. That is what she is experiencing, pretty much.

    I feel so helpless and unable to help her right now. I have read and researched, make too many phone calls to docs and clinics to count, and cannot even get anyone to treat her for the pain that is fogging her brain and locking her in agony.

    We finally got the referral to the movement disorder doctor last month. The first available appointment is in November. It amounts to just under a 5 month wait.
  9. ML

    ML Guest

    What a never ending nightmare. I think with this group of board aunties you'd have hundreds of kidneys for sale. Continuing hugs of support.
  10. TerryJ2

    TerryJ2 Well-Known Member

    OMG, what a bunch of donkies you've had for doctors! I am so sorry.
    I'm sending {{hugs}}
  11. susiestar

    susiestar Roll With It

    No need to insult the donkeys, Terry!
  12. Mamaof5

    Mamaof5 Guest

    You know, it's funny ... well not so funny but a lot of what you are describing kind of sounds like Huntington's Disease...
  13. Mamaof5

    Mamaof5 Guest

    But then again it also sounds either like Pain-Prone Disorder or myasthenia gravis (http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm) the latter being most fitting but I'm just trying to throw ideas out there for some kind of path to take when you do get to a specialist.
  14. JJJ

    JJJ Active Member

    Have they tried giving her Flexiril or another muscle relaxant???
  15. Marguerite

    Marguerite Active Member

    "Doctor, the reason we have waited for so long, is there has been a lot of cross-confusion over what this could be; I first asked about the possibility of it being a movement disorder on xx/xx/xx and even you yelled at me that I was not to ever mention tat again. That is just one example; multiply that level of confusion by the number of doctors, students and other interested parties who have seen her, and you will realise tat as I am just the parent and NOT medically trained, I have to be guided by those who are. I want my girl to be well, and if you find this frustrating, think how bad it is for me. And bad as it is for me, Jessie is the one having to live with this and having to wait so long is inhumane."

    Don't let it pass. But also, don't change doctors either. It does sound like he's on the verge of getting it.

  16. susiestar

    susiestar Roll With It

    Marg, it would be nice to say that to him. With most docs I wouldn't hesitate. I have seen enough of this doctor to know that he will get ALL caught up in the idea that I am challenging him and he will proceed to do NOTHING for Jess. I have seen enough signs that he would just refuse to treat her if I asked questions he didn't like. Until we see a doctor who can either treat her or refer us to a different pediatrician neuro I have to be VERY VERY careful. I would not permit any other doctor to get away with this, but my back is already against the wall and Jessie is the one who will pay if keep pushing.

    Mamaof5, I will look into those. Thanks!

    JJJ - flexeril is about as effective as an M&M. We have tried quite a few others. Soma was the most helpful, but it stopped after a couple of months. Baclofen is not quite as good as soma was, but it hasn't stopped working yet. We haven't yet tried zanaflex, and other than phenobarbital or benzos (which no one will rx to her at this point), we have tried most of the available muscle relaxers. At their best they help with the pain, but they don't slow or stop the spasms.
  17. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm sorry to hear she isn't doing better; I've been keeping her in my daily prayers. I really hope an answer and a cure are found soon.
  18. totoro

    totoro Mom? What's a GFG?

    Give her a big soft hug. I just can't imagine what I would do.
    I know how docs can get though, you go in there with your list of ideas question and concerns... A lot of them do not like this. PFFF!
    You are doing what most Moms would. That kid needs help and all you can do is keep taking ideas trying to get her help without losing your mind.

    I am so very sorry
    She is such a sweet kid
  19. mstang67chic

    mstang67chic Going Green

    I'm sure you've already looked into this but is there any way to get to Shriners (or do they just do burns?) or St. Judes or something similar? I can't imagine living like she does and not having doctors take me serious. Hugs to her and you both.

    Just a thought but since this is muscle related, has she tried maybe doing some sort of Yoga or Pilates? I have no clue obviously but it seems like maybe it would help a little since it's a lot of stretching.
  20. timer lady

    timer lady Queen of Hearts

    We have a Shriner's here in town & I've heard nothing but good things. If Mom is paying for a trip to Mayo or Cleveland Clinic for you would she do the same for Jessie?

    Just tossing out some thoughts. by the way Susie, I've dealt with some very arrogant neuro doctor's ~ they make me crazy. It took me time to figure out you have to be arrogant if you're messing about with or in the brain. Doesn't make up for the lack of listening skills.

    In the meantime, give J a gentle CD board auntie hug.