So Scared and Frustrated

Discussion in 'The Watercooler' started by susiestar, Oct 2, 2009.

  1. susiestar

    susiestar Roll With It

    I am starting to wonder if Jess will ever get better. The shaking is getting more intense, more painful (we didn't know it could), and she is having shorter and shorter periods between the bouts of shaking.

    It is more like all the time.

    Tonight I just sat and held her. Since 3pm she has been shaking so hard that if she sits on a bed it feels like those magic fingers thingies in cheap motels. It is even getting harder for her to drink.

    The neuro is not going to do much until after the MRI. Not sure he will do much after either.

    I just want it to STOP. Even just for a few days. Or be less intense. The docs look at me like I am crazy when I describe it. ALL of them.

    And each one falls back on the "it may be that it is just caused by depression or mental illness".

    WTH???? Depression causes your entire body to shake uncontrollably? Never heard of that symptom.

    Whatever the stuff is caused by, MAKE IT STOP!!!!! MY BABY HURTS!!!!!

    Thanks all. I am just worried sick about this. Just sick.

    by the way: Her therapist does NOT think it is caused by depression.
  2. gcvmom

    gcvmom Here we go again!

    It really, really sounds like a movement disorder, although what's causing it I have no clue.

    Could be metabolic, neurologic, immunologic...

    Refresh my memory... what tests has she had so far and what did they rule out?
  3. flutterby

    flutterby Fly away!

    Susie - I'm so sorry. I wish I could offer more, but give Jess gentle hugs for me.

    Do her muscles stiffen when this happens?
  4. gcvmom

    gcvmom Here we go again!

    Did you see anything that looked familiar on the WEMOVE website?

    I was skimming through here because it sounded like what she's been experiencing.
  5. susiestar

    susiestar Roll With It

    Her muscles stiffen so they feel like iron bars. It is excruciating for her. I am amazed at her strength and sweet nature through it all.

    When she snaps because it hurts she apologizes in less than 60 seconds. I could not be so gracious.

    They did 7 different panels, basic blood work, copper levels, rheumatoid panel, antinuclear antibody, antimitochondrial antibody, and some I just forget.

    We have an MRI of her brain with full anesthesia on the 15th.

    They say it cannot be seizures because she can walk and talk and doesn't lose consciousness. I agree, I guess.

    I lean toward movement disorder, but cannot find what doctor will treat it.

    This guy didn't want to do ANY medications. He doesn't think Keppra is a good idea. I agree, given what he says (little research showing effectiveness on Absence seizures, other medications with research showing they do help with her seizures).

    I had to be forceful to get him to diagnosis soma for the pain. He said rather angrily that in no circumstance would he rx lortab for this. I agree. It isn't a good choice. He was surprised. I told him the only reason we used it is because the pediatrician rx'd it - NOT because we asked for it.

    it is just so dang scary for all of us. Esp her. She keeps crying saying she won't be able to go to college or get married or have kids cause she will never stop shaking. This is the first time she has just bawled over that. She really means it. She believes it will only get worse.

    She told me she should have her "innards" out so she can't have babies. Cause if she DID get pregnant she would shake the baby right out. Her words.

    My heart is just breaking tonight.
  6. flutterby

    flutterby Fly away!

    I'm guessing they determined it's not her seizure medications? Have they looked into muscular dystrophy? I was thinking she could have severe myotonia that could maybe cause her to shake like that.

    I think you need to make a trip to Cinci and have her seen at Children's.
  7. susiestar

    susiestar Roll With It

    gcv - that is exactly what it sounds like to me. the doctor refused to even TRY any of those medications. Period.

    I keep coming back to that one. It is a great website, thanks for giving me the website.
  8. susiestar

    susiestar Roll With It

    That may end up coming to pass. For now we have to muddle through this here with our doctors. I just wish they didn't always assume she needs therapy.

    In this one way I wish we lived closer to Cincy.
  9. Abbey

    Abbey Spork Queen

    First of all, what a scary thing. I know nothing about such things so I can't give any guesses.

    Secondly (to put a bit of light on this) I read your post at 4am, so I'm not exactly awake and I thought it said 'Will Jesus ever get better.' I'm thinking, unless you have a Latin relative, Jesus kind of got nailed to the cross. The outcome was not good.

    Sorry....I digress. Back to your daughter.

    I would really question the medications. I don't know much about them other than they reak havoc on my body. Sounds like doctor might not be totally in tune with what is happening to her. She sounds like a lovely girl, though, and aware of what is happening to her. I'd get a 2nd opinion.

    Or third.

  10. Lothlorien

    Lothlorien Active Member Staff Member

    You really need to get her into a children's hospital. I hate, hate, hate when docs don't listen to you.
  11. susiestar

    susiestar Roll With It

    Last night was truly hideous. I just HATE illness. Jess already went through so much.

    Last night, after my last post, she came to get me. She wanted to know what she did that was THAT bad that she was being punished that way. This is what she said.

    "Mommy, why do I always have to be in pain? What did I do wrong? First with Wiz and now with this, why do I have to have it all?

    Is God Mad at Me?"

    My heart broke and was in a million tiny pieces on the floor. I just held her while she asked this. She is starting to think it is her fault - that she did something to deserve this.


    This is the child who apologizes if she is a bit short with you - often we don't even really notice the "tone of voice" she refers to as being "snippy".

    This is the child who moves bugs out of the house, who still loves her older brother even after all he put her through. This is the child who almost never failed to bring sunshine to my life. Even the things she did that were "against the rules" were things that the rest of us pften did not even notice.

    I just hate not having an answer when she starts asking "why me? Why does God hate me? Was I that bad to Wiz?"

    It was SUCH a bad night. After a bad day.

    She works SO HARD to do all she can do. To help out, still get chores done, etc....

    We ARE working with a Children's Hospital. I think this is kind of out in left field, so there just are not people who are very knowledgeable about it. But something has GOT to give here.

    It just is going to break her spirit if this keeps up. It is SO painful. And it just won't stop.

    Thanks all. Keep the ideas coming. I am willing to consider things. Heck, almost anything.
  12. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Susie, I don't know Jess's history. If it were me, I'd get another opinion. It seems insane not to try to at least stop the symptoms with medication. (((Hugs))) to you and your precious daughter. I hope somebody finds the answer.
  13. klmno

    klmno Active Member

    There are a ton of things that can cause tremors. I'm assuming that some of the blood tests were to check the thyroid??? Anxiety can cause tremors and sometimes it is a permanent thing with no found reason. I hope the MRI ehlps find some answers- then, maybe not- I'd rather find out that it's a simpler, easier problem. Can you see any pattern to it? I get them- part of it is heredity and part anxiety. Still, if I'm hungry it is more likely to happen and can stop if I eat, even though it is not related to something physical like diabetes.
  14. smallworld

    smallworld Moderator

    Susie, I was told by someone I know through the CABF website that not all neurologists are trained in movement disorders and that to get to neuros who really understand movement disorders, you should contact your local chapter of the Tourette Association of America ( Neurologists who work with the Tourette population can differentiate between tics, dystonia and other movement disorders.

    Hugs. I hope you get some answers soon.
  15. Hound dog

    Hound dog Nana's are Beautiful


    Jess has had so much testing.........

    But something popped into my head this morning and I thought I'd toss it out there for consideration.

    How about looking into mylane (can't spell this morning) sheath's that affect the covering around the nerves? Sort of like Parkinson's that area. Usually doesn't affect kids, but ya know that doesn't mean it absolutely can't affect kids for some reason.
  16. Marcie Mac

    Marcie Mac Just Plain Ole Tired

    Susie, you have just got to take some video of her when she is having these shaking bouts - a picture is worth a thousand words

    Did they check her magnesium and potassium levels as a drop in either of these will cause muscle spasms. A few times when SO went in with his breathing problems which kicked in due to pain with his muscle spasms, he had almost no potassium in his system. Docs do not know why this is happens to him

  17. susiestar

    susiestar Roll With It

    I do have video. Sadly, it is starting to be unneeded as the shaking isn't stopping much. I will look for a doctor through the tourrettes society. I will also look up myelin sheath disorders. I am willing to look into anything and everything at this point.

    I don't know how much stress and anxiety is playing into it. It has to be a factor. She would be crazy if it wasn't. She is a lot of things, but crazy isn't one of them.

    They have checked electrolytes, as well as thyroid.

    No heredity of this kind of thing on either side of the family as far as we can find. I have been contacting older relatives and asking about this and none have any memory of any relative with anything even relatively similar.

    Doesn't seem to be hunger related.

    I am just so scared. She is calmer today, but still shaking. She APOLOGIZED to me for saying what she did that made me look like I was going to cry.

    I just about ripped her head off. She has NOTHING to apologize for. My feelings and actions are MINE. She can worry about them when she does something boneheaded like apologize for hurting or apologize for coming in at night to ask me to operate the inhaler for her. GRRRRR. I have NO intention of letting her apologize for MY feelings. They are MINE.

    She is NOT responsible for them. She will get the clue.

    thanks everyone. I AM keeping a running list of these things you suggest and I will be going over them with the doctor even if he thinks he doesn't have to.
  18. Mattsmom277

    Mattsmom277 Active Member

    (((hugs))) what a terrible situation. Your poor girl :(

    I do hope you find someone to listen and some ANSWERS. I haven't a clue what would cause this all over?? I do have MS, and muscle stiffening and spasming is very painful. My heart goes out to your daughter. I also get shakes in specific areas during muscle problems. But never all over. difficult child has been diagnosied with familial essential tremors although I am skeptical it is his problem. He gets horrible tremors in his hands that extend into his arm to his shoulder and I hate it. I want to stop it. Save him. I can't imagine something like that all over!! His tremors, once started, do worsen when his anxiety goes up due to embarassment or frustration/anger at the tremors happening. I've seen them mildly tremoring and he works himself up to such frustration and pain (emotional) over it, that the anxiety/stress from his emotions enormously affect the degree of his tremors. I started rubbing his back and talking him down , calming his mood, and finally he has realized it is a direct correlation to how bad his tremors become. So he now works to stay calm when tremors begin and although nothing is going to stop the tremors, they are no longer as out of control as they were when his emotions bounced around. I still feel helpless and worry about his future. His tremors become visible and intrusive with fine motor skill use. Even writing with pen or pencil for more than 5-10 minutes will always induce tremors and he cannot take notes in class, work with small materials (trades are out!). He can't do dishes, tying his shoes is now out as the tremors progress. Again, I don't believe this is what they have said (as he has bad spasms in his legs as well, not tremors, but massive spasms that are not typical growing pains etc).

    I just wanted you to know that I kind of, although not fully, do understand what you must be going through. Tell your girl to hang in there. As for you mom, you are doing all you can for your girl. Keep pounding on doors and making a stink until the right person listens. I hope you find answers, and a solution, very quickly.
  19. flutterby

    flutterby Fly away!

    Susie -

    Just one more thing I thought of. If I recall correctly, she has PTSD from things in the past with Wiz. PTSD can do all kinds of things to the body on a physical level. I have a friend with Complex PTSD and he's experienced things no one can explain, spent years trying to find a diagnosis, only to discover that it was the PTSD making itself known. It's like the body reacts to the stress the brain cannot handle.

    I'm not saying it's all in her head, or that she's depressed. I'm just wondering if this could be playing a part. Definitely keep looking into any medical reasons; with your history and hers it wouldn't surprise me to find out she has a muscle or movement disorder. But, I just thought I'd throw that out there to keep in the back of your mind.

    My heart aches for Jess.

  20. witzend

    witzend Well-Known Member

    No advice, just hugs for you both.