Dystonia, but really I just need to talk about my daughter - Mothering Forums

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Old 11-23-2009, 01:33 AM - Thread Starter
 
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http://www.mothering.com/discussions....php?t=1147722

That is the backround. It's really long. What started as a possible knee issue and a dramatic limp has now gotten my daughter a tentative diagnosis for dystonia in her leg. It isn't secondary to anything, she has not had an injury and we have no history of it in our family.

I really really really don't think this is what's going on with her. I have asked for a referral to a ped ortho and we're in the process of setting up the appointment. I am SO HOPING it's just a knee thing that is easily fixed. My mother was misdiagnosed with a degenerative muscle disease about 15 years ago and she is plainly fine. I know lots of other mothers whose children were misdiagnosed with big scary things that turned out to be something else.

There is no TEST for Dystonia and the thing I keep coming back to is the neurologist was ready to send us on our way as "a knee thing with some behavioral issues" (meaning she walked slowly and with a bit of a stiffness in her leg until we got to the doctors and the more they tried to get her to run and convince her to 'walk right' the more dramatic the walk became. We have NEVER seen that kind of thing from her again. We stopped talking to her about it, right after she got tonsillitis so we were home and she was resting for several days. THEN we started the meds but she was already improving) until her partner, who was on the phone, leaned out of her door and covered the phone with her hand and said "dystonia" and went back to her conversation. It sounded like a guess.

I am terrified. Even posting here, I've been working up to it for a month. I feel like putting it all out here in this forum is admitting there might be something very wrong. There are so many kinds of Dystonia - from very treatable to not as much, painful or not, spreading or not. I'm so scared.

My daughter is fine. She's healthy. She climbs the slide and jumps on her little trampoline. She does not run anymore. She only seems to have a bit of a limp when she's tired. I just want her to be alright. I'm so afraid for her.

I can't sleep, I keep crying, I'm having stomach issues. She's only nearly four and hasn't really noticed anything (that's another thing that makes me think NOT dystonia, usually it means, as I understand it, the muscles don't work together or do what you're asking them to. She just looks like sometimes her knee gives out a bit and then she does a bit of an odd thing with her leg when she's VERY tired, but there doesn't seem to be the twisting assocaited with dystonia?) so I very much do not need to be a wreck around her and scare her. I have started sleeping her bed. I can't stand to be away from her. I'm just so scared.

I can't even research it to try to reassure myself because there are just so many ways it can go that it's really just much more scary than helpful and essentially there's no set path of how this would go if it is dystonia.

She has an MRI in a few weeks. Please pray for us. I am so hanging all my hopes on this being a correctable knee issue or something. Someone please just tell me to keep her off of it, let her rest, and she'll be fine. Is that really SO out of the range of possible? She's just so tiny and young, she's such a spark. I hate to think of her having to deal with something like this. I know every mother feels the same way, I do, and I know my child is no more deserving of good health than any other child but she's MINE (and I am so very much hers) and I am just so afraid for her.

Does anyone have experience with this kind of thing? I don't even know what kind of experience that would be. I'm pushing for her to see a ped ortho at Childrens as we've seen one before and I've always understood that Childrens is the way to go if possible. I love her ped and I even like the neuro but this business of we'll try this and see for six months and then try something else? No. I see no reason why she can't see someone else at the same time. I can not wait six months. She can not wait six months.
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Old 11-23-2009, 02:59 AM
 
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Oh.
I am crying reading your post because your pain and fear for her and, really, agony over this is just palpable. I'm so sorry you are going through this.

I don't have experience in this area but I very much identify with the emotions you're expressing. I've been there several times (and am there presently again) with my son. I know how desperate you feel for her.

I will pray for you. I'll pray for your daughter, for answers, and peace for you.

I would push for the ortho appointment. I would also see if you can get a second ped. neuro opinion. Might that be possible?

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Old 11-23-2009, 08:21 AM
 
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oh mama. i've read all your back story and i am feeling for you and your dd. i'm so sorry this is causing you so much pain and grief. Thank goodness she's still oblivious to anything serious being wrong and hopefully it will be a correctable issue and she will never have to be the wiser about all of the "what ifs" that are circling in your brain. i'm sorry i don't have any concrete advice to offer, (my dd is 3 months old...) but i just wanted to let you know that i'm thinking about you and your dd and hoping for the best possible news from the upcoming doc appointments.

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Old 11-23-2009, 11:01 AM
 
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I could not read and not respond with many, many hugs.

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Old 11-23-2009, 01:23 PM - Thread Starter
 
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Thank you. It's just so hard. I want her to be healthy and there's just so little I can do.
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Old 11-23-2009, 06:15 PM
 
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No words of wisdom but I am hoping you get answers soon and that this is something that's easily treated.

Normal is just a setting on your dryer.
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Old 11-24-2009, 01:27 AM - Thread Starter
 
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Thank you. It has just been such a hard day - or the days are mostly ok because I'm busy but once she goes to sleep at night it's like all the sutff I've been stuffing down all day comes up and I freak out. I feel so alone, no one wants to hear me go over and over this and talking about it isn't making anything happen anyway and I feel like no one in my life is taking this seriously. Not that I want to see anyone else freak out and confirm that yes, this is something to be worried about but I just want to say PEOPLE HAVE YOU BEEN PAYING ATTENTION???

This MRI seems ages away, there's no appointment with an ortho yet. Sometimes I think I'll take her off the meds, find a new ped and start all over and see what happens, but I don't think that makes much sense. I just want her not to have this hanging over her. I would happily cut off my own leg if she could just not have this and just need some littleno-big-deal knee thing fixed.
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Old 11-24-2009, 08:55 PM
 
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The nights are always hardest for me too.
How much do you go over and over it? Is it processing it for you or tying you into a loop if that makes sense? I get "looped" easily and I'm wondering if that's what you might also be experiencing.

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Old 11-24-2009, 11:02 PM - Thread Starter
 
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I just keep thinking that this can not and should not be happening and I'm freaking out that there's nothing I can do about it or for her. I can't make things move fast enough, I can't MAKE it be something else. I can't get a pediatric orthpedist to see us right this minute and even when I do, I can't MAKE it be something other than dystonia, and I'm still praying it will be something else. I just keep thinking of how she is now and that she was running just months ago. How can my perfectly healthy child suddenly have this thing just out of the blue?

I can't breathe. And I can't fix anything. And how will this change her life? Will it be something small and managable or is this going to make her into a differenr person? I am heartbroken. I have a three year old who is counting down the months till she's old enough to take dance and gymnastics and today she's tripping when she tries to walk. How will I explain this to her?

And then I keep hoping I won't have to, that it will just be some ortho thing they can easily fix. This is a rare disease and there's no test for it, what's the real actual likelyhood that it's this thing? Are the doctors good enough? Should I be finding someone else? Someone more aggressive? I have no idea. It's ALL I can think about. This is my baby. She is my life.
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Old 11-25-2009, 01:21 AM
 
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What kind of testing did the neurologist do?

: Hoping for answers for you.
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Old 11-26-2009, 12:07 AM - Thread Starter
 
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The neurologist sent her for more blood tests and set up an MRI. We had to reschedule because my daughter had tonsillitis so that's been put off till Dec 10th.

She's been so wobbly the past few days. I am so afraid for her.

I can't believe how slowly things are moving. The more I think about it, the more I'm frustrated that they're like oh well she's not hurting, someone suggested dystonia, let's medicate for that and see what happens. How is that aggressive enough? Why am I having to push for an orthopedist?

Even though we like her ped and have been with him since the very beginning, I am so tempted to find a new one. I appreciate that he calls us to follow up and check on her, but shouldn't this be more aggressive?

She was doing really well for a few weeks but for the past few days it's as bad as it was before we saw the doctor. I keep thinking I should call her ped but will he just refer us to the neurologist again? And isn't she going to say keep taking the meds, see what happens? Is this enough?
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Old 11-26-2009, 12:52 AM
 
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This is someone I went to school with, she has some videos dealing with Dystonia

https://www.shakeyamy.org/Home_Page.php

http://www.youtube.com/user/ShakeyAmy

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Old 11-26-2009, 10:54 PM - Thread Starter
 
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That was really really scary.
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Old 11-27-2009, 12:19 AM
 
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Ok, so I read your other thread, and at the beginning you were sure it was behavioral. Are you sure it not? I know it's hard to be so afraid that your child is sick, and you have come to the right place, but is it still possible that she is fine?

The fact that it comes and goes is a good sign, right? That would mean that it is possible that it isn't an illness, but under her control.

I am so very sorry that you are so scared, we are here for you.
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Old 11-27-2009, 12:31 AM - Thread Starter
 
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Thank you so much. What I would like to think is that in the beginning she had something going on - either she just got tired of us trying to make her go faster OR she had actually hurt something and didn't tell us - and in all the throwing herself on the ground, she hurt her knee or hip or foot or something. Because we were sort of home bound and stopped a few things (jumping up and landing on her knees, jumping on the trampoline) for a while, whatever it was got better and now that she's back on the trampoline and trying to 'scrub her knees' maybe it's worse? I am hoping for some kind of soft tissue issue that is fixable or a repetitive train injury or something.

I don't feel like I know what to expect from the doctors she's seeing. As I see it, we went to her ped who is supposed to direct us to the correct specialists. He spent a long time with us and made some off hand comment about "God forbid it's neurological" and then before we left, made us an appointment with the neurologist. TO ME at the time it sounded like ok, we've done blood tests to rule out somethings, the x rays don't show anything, so let's just rule this out as well. NOT like he thought we were actually dealing with that. And the neuro, who is very kind and and also spends a lot of time with us, to me, just isn't really treating this or us with the urgency *I* think it deserves. And possibly that's because my daughter appeared better at the last appointment. I don't know. I don't know how to navigate this. I keep thinking maybe I should just start over with another ped and see where it goes. Just in case.

I just keep thinking...she was FINE just a few months ago, WHERE did this come from?
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Old 11-27-2009, 04:47 AM
 
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Old 11-27-2009, 08:05 PM - Thread Starter
 
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She is much worse today. She can't really walk without leaning on someone. I don't know what to do for her or who to call. We saw her ped this morning and she was walking better but now it's just really bad. She has a sinus infection and the beginning of an ear infection so we're trying to clear that up so she can have the MRI. It's not till the tenth. How are we going to wait that long? Shouldn't we be able to get in somewhere sooner? How is it possible she's this bad and has to wait for that? And the ortho won't call us till Monday at the earliest.
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Old 11-27-2009, 08:41 PM
 
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I would find it unbearable to wait too.
Can you call the neuro on Monday and describe the sudden worsening? Maybe they can bump up that MRI?
Or take her to a children's hospital ER and with her having great difficulty walking. I'm thinking they'd order an MRI right away possibly. Is it possible the infections are making her balance off or something?
I'm praying this is something fixable and that you are able to have some measure, as much as is at all possible, of rest and peace while you wait.

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Old 11-27-2009, 09:04 PM - Thread Starter
 
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I just remembered that the reason they put the MRI off in the first place was an infection so they won't do an MRI till this sinus thing clears out. She's not complaining about the infection. I wonder how long it will take to clear up? Because the neuro really wanted us to use a particular radiology department but I DON'T CARE. I will happily see anyone as soon as she's cleared to have an MRI.

I guess they won't do it right now because she will have to be sedated? And she will, which scares me, but she's terrified of loud noise and she's three. There is no way she'll be able to be still.

I will call the neuro on Monday if not tomorrow and let her know how bad it's gotten. I don't know if she'll be able to do anything other than see us Monday but at least I'll have something coming up.

The other thing is, when I mentioned my idea that it might be a knee thing because some things my daughter was doing and some timing, she kind of blew me off. Our ped is very much in favor of us seeing an ortho and is also trying to help us get in ASAP. Having her just dismiss that out of hand kind of put me off.

Right now I keep telling myself that they have done x rays on the legs and lots of blood tests. Both the ped and the neuro have said seperately "we've ruled out all the big scary things" and neither seems to be frantic or urgently trying to move this along so maybe I can breathe a little. She's happy, her appetite is good, she's not quit trying things because of her leg or anything so these are all good things, right?
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Old 11-27-2009, 09:10 PM
 
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Those sound like very good things to me!

What treatment are they doing for the sinus infection? Antibiotics? It should clear up fast though fluid might remain. You could look into chiropractic or, even better, cranial sacral to try to move that fluid. A lot of those practitioners will share massage techniques with you to drain the fluid so you can keep at it at home. I can try to describe what was shared with me:

start at the middle of the forhead and make downward strokes to the sides of the head (left and right from the middle and then down the side of the face to the neck. After doing that (maybe 10 times, I can't remember) you massage from the bridge of the nose in long strokes down the side of the nose to the corners of the mouth. You're trying to move the fluid down past the nose and past the ears.

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Old 11-27-2009, 10:03 PM - Thread Starter
 
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Thank you! I will try that! She LOVES to have someone rub her head or stroke her face. I know she'll sit still for it and it's something I can feel like I'm doing for her.

Her ped has given her antibiotics for a few days and I can certainly see about getting in with a chiro if that will help. I don't think we have anyone who does (is) cranial sacral but I can certainly look.
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Old 11-28-2009, 11:46 PM - Thread Starter
 
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I don't know if rubbing her face has helped, but it has been calming for her. I can remember stroking her head when she was a fussy newborn.

Right now, she's had a very wobbly day. She hasn't stopped trying to get around, but she's fallen a fair amount and is asking to be carried sometimes.

My plan is to call Children's again about an ortho on Monday and tell them the one I want to see is the one that has the first available appointment.

If that does not get us a soonish (and really, I need it to be SOON, like next week) appointment, I'm going to call her ped and beg him to referr us to someone. We are an hour away from LOTS of major medical facilities in every direction. Send us to one.

Then we need to call her neuro and let her know things have gotten a lot worse since we saw her. When we were there before, my daughter was walking fine and even trying to walk really fast (couldn't run). She wasn't wobbly so much as we could see there was something going on with her right leg/foot the faster she moved.

If the ortho can't tell us anything, and I am SO PRAYING they will find something they can FIX, I'm going to ask to be referred to a movement specialist. Our neuro is wonderful, she has a great rapport with my daughter, but this is not her area. Apparently there are some clinics held monthly in New Orleans dealing with dystonia and treatments, if we have to be dealing with this then I want to go to those.

Thanks for all your thoughts and prayers and for hearing me.
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Old 12-02-2009, 07:06 PM - Thread Starter
 
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So just got back from seeing the neuro. He is not pediatric but he is a movement specialist. He watched my videos and listened to our story. He said he couldn't see any reason for her to be having any trouble and that he'd had a lot of success with kind of mysterious muscle stuff (probably not what he said but I'm tired and malnourished so work with me) by using anti-convulsives. He didn't say dystonia till I did and then said focal dystonia was a possibility. I asked if it would progress and he said he didn't expect it to "disrupt her development." It wasn't till I repeated this to my mother that I thought hey, um, what does that mean? He says to leave her on the Sinemet and see what happens between now and the next visit. She's actually getting better since she stopped it, but she's also been sick and then had a lot of rest. Who knows.

He wants to see us right after Christmas, when we have the MRI. The other neuro doesn't want to see us till MARCH.

So Friday and Tuesday we will see pediatric orthpedists and Thursday she will have the MRI. Then we will see this neuro on Dec. 28th and we have another lined up (different neuro, ped, I forget where. Childrens, maybe? Who knows) on Jan 6, happy birthday to me!

So that's what's going on with us. I have decided I am not helping anyone by obsessing about it. I am not going to do any more searching online and I hope I can kind of not talk about it, because that ends badly. I'm not eating. I can't sleep. When it comes up in my head, I'm going say a prayer and let it go. Last night I had a really awful thought but it's true, I can't make this be something it isn't. I can't hope it into a different thing. I can't tell the doctor what *I* want them to hear because it will *sound* more orthopedic. I have to just say a prayer and let it go or I'm not going to make it. I am blessed. My husband has been a rock. My daughter is happy and not hurting. None of her doctors have said I need to panic, they only say that it can progress when I prod them and they say yes, sometimes it can. I don't like that, but I can't change it so I just won't think about it. I stayed up all night one night watching her sleep and trying to see if she was having any spasms in her arms or legs. That is no way to live. She's happy and I need to just be thankful for that.

I am not resigned but I can not spend every moment in outright panic because that is where I have been and it's not helping a thing.
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Old 12-02-2009, 08:48 PM
 
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Originally Posted by NiteNicole View Post
He didn't say dystonia till I did and then said focal dystonia was a possibility. I asked if it would progress and he said he didn't expect it to "disrupt her development." It wasn't till I repeated this to my mother that I thought hey, um, what does that mean?
I don't know what he meant either, but it sounds like he thought she would be cognitively and physically ok.


Quote:
Originally Posted by NiteNicole View Post
I have decided I am not helping anyone by obsessing about it. I am not going to do any more searching online and I hope I can kind of not talk about it, because that ends badly. I'm not eating. I can't sleep. When it comes up in my head, I'm going say a prayer and let it go. Last night I had a really awful thought but it's true, I can't make this be something it isn't. I can't hope it into a different thing. I can't tell the doctor what *I* want them to hear because it will *sound* more orthopedic. I have to just say a prayer and let it go or I'm not going to make it. I am blessed. My husband has been a rock. My daughter is happy and not hurting. None of her doctors have said I need to panic, they only say that it can progress when I prod them and they say yes, sometimes it can. I don't like that, but I can't change it so I just won't think about it. I stayed up all night one night watching her sleep and trying to see if she was having any spasms in her arms or legs. That is no way to live. She's happy and I need to just be thankful for that.

I am not resigned but I can not spend every moment in outright panic because that is where I have been and it's not helping a thing.


Google useful for some things but when one is waiting for a diagnosis, it can be the worst thing. You can pull up so many things that will keep you up at night.

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Old 12-02-2009, 11:32 PM
 
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So that's what's going on with us. I have decided I am not helping anyone by obsessing about it. I am not going to do any more searching online and I hope I can kind of not talk about it, because that ends badly. I'm not eating. I can't sleep. When it comes up in my head, I'm going say a prayer and let it go. Last night I had a really awful thought but it's true, I can't make this be something it isn't. I can't hope it into a different thing. I can't tell the doctor what *I* want them to hear because it will *sound* more orthopedic. I have to just say a prayer and let it go or I'm not going to make it. I am blessed. My husband has been a rock. My daughter is happy and not hurting. None of her doctors have said I need to panic, they only say that it can progress when I prod them and they say yes, sometimes it can. I don't like that, but I can't change it so I just won't think about it. I stayed up all night one night watching her sleep and trying to see if she was having any spasms in her arms or legs. That is no way to live. She's happy and I need to just be thankful for that.

I am not resigned but I can not spend every moment in outright panic because that is where I have been and it's not helping a thing.
The appointments you've got lined up sound really good.


I will pray you are able to do just what you wrote. If you find it impossible please consider an SSRI medication. If you need it use it. They take a couple of weeks to kick in but can make it much easier not to obsess and to enjoy the moments. If you do need medication it doesn't have to be forever.

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Old 12-05-2009, 02:01 AM - Thread Starter
 
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Just an update, we saw an ortho today who ruled out orthopedic causes. For today, I will be happy they could do this without leading us down any long and invasive testing that would be painful.

MRI next Thursday. Think of us. I know she's going to be scared. I don't know how to prepare her in a way that won't make her just more anxious every day till it happens. I think the morning of I'm going to have a talk with her about it so she's not surprised. I don't think there's anyway I can do it so that she will not be upset at all, but I don't want to spring it on her because she'll never ever forget that and I don't want her to be afraid of EVERY doc appt.
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Old 12-05-2009, 02:15 AM
 
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Originally Posted by NiteNicole View Post
Just an update, we saw an ortho today who ruled out orthopedic causes. For today, I will be happy they could do this without leading us down any long and invasive testing that would be painful.

MRI next Thursday. Think of us. I know she's going to be scared. I don't know how to prepare her in a way that won't make her just more anxious every day till it happens. I think the morning of I'm going to have a talk with her about it so she's not surprised. I don't think there's anyway I can do it so that she will not be upset at all, but I don't want to spring it on her because she'll never ever forget that and I don't want her to be afraid of EVERY doc appt.
She's going to be sedated, right? Do you know what they are using? She may not remember it at all (other than the trip) depending on what they use. Tell her they will give her something to make her relaxed and then take pictures of her head. Make it silly if you can. We make up songs and look at pictures if I can find them on the computer. It may not be nearly as traumatic as you might imagine. I'm assuming they are sedating her. I can't imagine doing an MRI with a child who was conscious.

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Old 12-05-2009, 11:57 AM - Thread Starter
 
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They are sedating her, which is why it has been pushed off so long. She was supposed to have it a month ago but got tonsillitis, now we're trying to clear up a sinus infection.

I don't know what they are using. Last time she was sedated, it was for stitches and she fought them all the way. She was thrashing when they did her stitches. It was horrible. She did do fine once she slept off the sedative. At the time, I really hoped that would be the hardest thing we had to go through.
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Old 12-10-2009, 01:19 AM
 
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I’ve read both threads and empathize with your situation. Your posts take me back a few years when my son was having frequent severe leg pain. Unlike you, I failed to investigate the issue for quite some time because our pediatrician kept telling me he is fine; and I wanted to believe he was fine. Finally I brought it up to my son’s neurologist (he had a neuro from birth because of a brain bleed - mild CP). Originally the neurologist thought it was Duchene’s MD but my son’s CPK levels were fine. So the neuro did genetic tests that came back with the diagnosis of CMT4F. Since then we’ve seen several neuros and orthos. We’ve been told it was unconventional to jump to the genetic tests when other tests, like NCV testing, could have been done. Plus not all forms of CMT can be tested genetically. At this time we actually believe his pain is from the CP and not the CMT.

I’m not familiar with Dsytonia but am a little surprised they medicated your daughter prior to doing all the tests. Has your neuro suggested CMT? There are many forms; many not debilitating. Symptoms can be problems with walking, running, and balance. Symptoms can also include foot drop, tripping, a strange gait, etc. CMT info

Whatever the final diagnosis, it is good that you are seeing several specialists.
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Old 12-10-2009, 02:58 AM - Thread Starter
 
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Thank you so much for that info. I hope your son is doing well.

I really don't think the first neuro really specializes in movement disorders. Once someone said "dystonia" she became really set on that and stopped hearing a lot of what I said or being willing to investigate other options, which is why we are trying someone else. *I* feel like there is a big wide world of "stuff" out there and there is no need to clamp down on one thing and treat that because hey, it could be ANYTHING.

The second neuro does specialize in movement disorders, but is not pediatric (though does see children regularly).

The third is pediatric and sees a lot of movement disorders. He's not set on any one thing but said focal dystonia was a possibility - but only after I mentioned it. I think he was and is waiting till after the MRI and also he seems willing to just kind of deal with it as just some qirk going on, you know? Like ok, here it is, let's see what we can do for her.

We have not been able to get in with Children's as the wait list is about a million years long.
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