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jlcarey

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Hi, I'm wondering if anyone can answer some questions I have. This is going to be long-winded so I apologize in advance, but please if you have ANY input, I would SO appreciate anything you'd care to say. I have a 12-year old niece who has been showing some symptoms that have pointed me to the ALS/MND type problems. I want to explain fully so that you may get a clear picture, and hopefully I can get some educated opinions of what the problem may be. I also understand that we won't know anything for sure until she sees the neurologist (she is scheduled for next Tuesday), but I just have so many questions right now that I figured it couldn't hurt to go ahead and ask. Here goes: We noticed about 9-10 months ago that she was having some facial "tics" I guess you would call them. She would almost constantly squeeze her eyes shut or open them really wide, she would squeeze her chin back as far as it would go and sort of grimace with one side of her mouth, etc. That lasted for a while, but it never got any worse or seemed to bother her at all. Now just in the last two months or so, though, she has a whole new set of problems. It started with my sister noticing that she just never seemed to sit still, she always seemed very fidgety, constantly moving. Then about 3 weeks ago, we noticed that she wasn't using her left hand (she is right-handed). She just let it hang at her side most of the time and used her right hand for everything unless she absolutely had to use both hands. She told us that she had a hard time controlling her hand and we noticed that it would just kind of flop around on it's own. It curls back sometimes and her whole arm sometimes will just go out to the side or above her head. Her hand would clench, not tightly, but you would see her fingers curl in, then her hand curl and flip around, etc. Anyway, about that time, my mom also noticed that sometimes her speech seemed a little slurred, she described it as it seeming like her tongue was too big for her mouth. Around that time, my sister took her to Cincinnati Children's Hospital, and a doctor (I believe just a GP) saw her at that time. She ordered an EEG (which came back normal we found out later). But while she was having the EEG, they said her hands kept hitting the sides of the machine and also her feet were flopping around and that by the time they were done with it, that her shoe was across the room and her sock was off of her foot. They taped that EEG session for the doctor to see what she was doing, and the doctor saw her, watched her walk, asked her to hold both hands out in front of her and turn her palms up. When she tried this, her left arm would fling out to the side, so the doctor tried to hold her hands that way and she was jerking the doctor's hands the same way, left hand out to the side. So they scheduled her an appt. with the neurologist there, but they couldn't get her in for almost a month. Since then (about 1 1/2 weeks ago), the symptoms have progressed equally to her right hand, so that she can no longer write legibly because her hand moves around so much. She also has a LOT of trouble trying to stand still and walk. She is constantly re-balancing and shifting her weight from foot to foot because they spontaneously just move or kick out. Her speech has gotten progressively worse, to the point that with those of us she is comfortable with, she just taps you and points or mouths what she is trying to say instead of speaking. I have noticed also, regarding her speech and her mouth, that in the past 4 or 5 days that her tongue tends to hang out of her mouth some when she talks or just to stick out and then back in sometimes when she's just sitting there. It never seems tensed, more flat and wide, and it tends to cause spit to gather at the corners of her mouth. My sister has noticed recently some problems with her neck also. Apparently, she is bending her neck and tilting her head pretty often. I haven't noticed it myself so I'm not sure if it is a jerky motion or just a constant movement as it was with her hand. So based on all of this, I've found suggestions of ALS, but I am skeptical about this, as seeing it in a 12-year old seems pretty rare, and even more so with no family history. It also seems to be progressing much faster than what I've gathered upon reading a lot of information on ALS. Also, I have asked her about any cramping or fatigue of her muscles and she says there is none, just no control over them. She has seemed pretty tired herself lately though, and sleeps a bit more than usual. She has also lost some weight, we're not sure how much, but definitely enough to notice (she was kind of hefty to begin with). I have been having trouble getting her to eat much most of the time, other times she seems to eat almost normal. So I know this was very long-winded, but is there anyone knowledgeable about all this that can give me any insight as to what the problem could be. I am just trying to get an idea if this seems like it may be ALS, or if not, what the other possiblities are. Thanks for any and all information anyone can provide. We are on the edge of our seats worrying about what is wrong, and having to wait so long to see the neurologist is just making it worse. Thanks again!

*Oh, also, we've noticed that when she is sleeping, she has none of the movements that she has when she's awake. Her hands and feet are always still.

Jessie
 

DMHltd

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12 yr old with ALS

I haven't been diagnosed with ALS or any other MND but I think others will say that these symptoms don't sound like ALS. My wife has Huntington's Chorea which is a rare genetic brain disorder that has many of the symptoms you describe. There is usually a family history of it though. If you don't have such a history, then it's probably not that. The diagnosis can be confirmed with a blood test. It took 10 years before she got as bad as you describe. Adult Huntingtons usually becomes apparent in the late 30's or 40's. There is a childrens version but I heard that the symptoms of that are more stiffness than jerkiness.
I think the neurologist is your best bet. I wish you and her the best.
 

jlcarey

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Thanks so much for your reply. I am also of the opinion that it's not ALS, but there's still that worry in the back of all of our minds. My worry is that it seems to be progressing SO fast and the doctors and the neuro.'s office doesn't seem to think it warrants much hurry. If anyone else has any opinions or expertise, or just has anything to say, I appreciate it SO much. I feel so in the dark about this, my niece is so scared but she tries so hard to not show it. I just can't imagine not having her around and that scares me to death, so I am SO worried right now, and next Tuesday can't come fast enough. Thanks again for your reply, I am trying to look into some other things that it may be, but I'm not having much luck. Best to you and all, thanks!
 

Vicki S

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I have ALS and my symptons were falling all time so it started in feet and lower legs. I also lost my balance. Your niece doesn't sound like she has als. She might have MD.

It also sounds a lot like cerebral palsy. But that would shown up a long time ago.

I know what your feeling waiting to the neurologist. I had to 2 months before I could the specialist but he didn't time telling was ALS.

Vicki
 

jlcarey

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Vicki, thanks for responding, I appreciate your input. I'm fairly certain it's not MD, she has no muscle weakness or fatigue, just loss of control. She hasn't been affected mentally whatsoever, besides just being scared of what's going on with herself. I did just a little while ago find something called Athetosis (which doesn't so much seem to be a diagnosis as just a collective category for all of the symptoms she is displaying. Here is a definition I found: Athetosis is a disorder that causes slow writhing movements of the entire body but especially of the arms, face and tongue. This describes it better than I could put together. I was trying to describe the movements she makes and the writhing and twisting movements describe it exactly. It's not so much jerky as just so awkward looking. Her hands twist and curl up and straighten then turn and flip and her arms fling out sometimes. Anyway, I'm glad to hear some other people saying it doesn't sound like ALS. From what I've found about ALS I was thinking it less and less possible that that is what she has. But my mom and sister are more reluctant to dismiss it, for some reason, and I guess I was looking to reassure myself that I'm not just wishful thinking. Thanks again for your input, and I hope all is well with you. Best of luck!

Jessie
 

cukita99

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i have als n those symptoms do not sound like she has als. the only one familiar is the speech. i will keep her in my prayers
 

vmd

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Is she having any problems with swallowing? I will keep her in my prayers.
 

hopingforthebest

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Pediatric neurologist

Since she is only 12 year old, she should see a pediatric neurologist and hopefully at a teaching university hospital.

Alot of different tics and I pray that a brain disorder is not part of problem.

Children diseases are very different than that of adults and brain disorders that are ruled out with MRI etc. cannot be excluded.

Good luck and I will pray for her!
 

Al

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Not being a doctor but having seen a lot of patients with ALS and other Mnd's I'd think ALS is out of the question from what you describe. I have no idea what to suggest but it doesn't sound like any ALS I've heard described.
AL.
 

Gina

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Hi , i am so sorry for what is happenig to your daughter this must be so stressfull to you and your familly.I have also a neurological disorder called dystonia.Invouluntary movements of the body.My neck at first would pull to one side and i often had a grimace expression on my face.Fortunately my condition has not worsend although at stressfull times have been more acute .This does sound to me more like a movement disorder than als.I attended several support groups when i was first diagonsed and a lot of the people had the symptoms that you are describing.Also when i am sleeping all symptoms dissapear! wishing you and your daughter the best.....God bless !....Gina
 

olly

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im so sorry to hear about your niece,i agree it sounds like a movement disorder.
when i read your post,cerebeller ataxia came to mind a mri should confirm a movement disorder like this. best wishes to you and your family
 

wright

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Hello Jesse

I have to agree with everyone else on here: that is not ALS (not even close). My guess is that they will repeat the EEG and run a number of other tests, but I'm sure they will get to the bottom of it. Cincinnati Children's has a great reputation, so you are in very good hands. It doesn't sound like anything life-threatening, so try to calm yourself and your family.
Please keep us posted.
 

Marjorie R. Wilcox

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So sad to read this. I don't think it is ALS.... but do I really know? Just my opinion for whatever that means. It sounds like cerebral pulsy.... caused by an injury to her head recently or at birth.... or a tumor pressing on her brain....but with a tumor I think she would have pain. I am very interested to hear what the doctors diagnose her with. I cannot believe that you have had to wait so long to progress with the tests. I will be watching for your reports. I care... and will pray. m
 
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