constant wriggling

Issues relating to parenting children/adolescents who have HMS / HEDS

fidgeting - any thing to help?

Postby bobbles » Fri Sep 21, 2007 10:50 am

Subject amended slightly to better reflect topic - Site Admin

I know that fidgeting is part of HMS, but I just wondered whether there is anything that can be done to help?

Millie's fidgeting is at a level where it's, distracting for her, and quite irritating for others to have to deal with....me and hubby even discussed the possibility of ADHD, as she really can't keep still....but I think it's just HMS-related.

I have made sure that school know that her fidgeting is part of the condition, so that she doesn't get penalised uneccessarily....but apparently, even when she stands at her teacher's desk for 5 mins to read her school book every day, she spends the whole time dancing from side to side shifting from one foot to the other. (But I'm aware that her knees do lock very easily, as she sometimes does what she describes as "I need to flake my knee out" - like a repeated shaking it out motion).

I have also noticed at home that she fidgets so much, one day when she was trying to tell me her times tables, I ended up asking her to stand up, but she shifted and danced around so much, I felt mean, so I got her one of her little chairs to sit on, and she couldn't sit still...

...I even tested her, by promising her a treat if she could sit still whilst she told me her 2x table.....I reminded her a few times when she started to fidget, and then decided not to say anything anymore as she obviously can't help it - and I let her have a treat from the sweetie tin anyway, for trying so hard.

I find that she has lots of itchy bits too - there's nothing visibly there, but she's always needing to scratch her arms & legs.

If we have to live with it, then I will accept that it's just how she is - but I just wondered if anyone else had similar problems, and had found anything that helped?

Sharon xx
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Postby Retro » Fri Sep 21, 2007 2:05 pm

Hi Sharon,

Sorry, I don't think there's anything you or Millie can do about fidgeting. I've never been able to sit or stand still. I don't find it's distracting to me because I just do it without thinking but I know that it has bothered other people.

As for the itching, would be worth thinking allergies. I itch from head to toe unless I take my antihistimine every day. My doctor hasn't sent me for allergy testing yet but your own GP might especially as Millie is so young.

Good luck.

Lindsey
...all the knowledge in the world is of no use to fools... ~ Long Road Out of Eden ~ Don Henley, Glenn Frey, Timothy B. Schmit (The Eagles)

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Postby Shadowlady » Fri Sep 21, 2007 4:06 pm

Hey hey,

Have you tried a wobble cushion? Obviously it's not going to stop her fidgetting, but I find that the gentle wobbly movements as I move about mean that overall, I don't have to do quite so many bigger fidgetty movements? Could be worth a try and they're good exercise too, like a swiss ball but harder to fall off ;)

Best wishes,
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Postby TED » Fri Sep 21, 2007 8:08 pm

Hi, Just to say that when I took Carrie along with me to Chloes' appt at GOSH last week, Dr Hassan & Prof G, said she shows classic eds traits and they commented on how fidgety she was, I just always thought it was just Carries' way as she has never sat/stood still for a minute ever, but apparently this is a classic eds trait. My wee baby is following the same pattern.

The dyan air cushion (wobble cushion) that Shadowlady is talking about you can ask the physio for that, we have one at home and one at school.

I think there is nothing your wee one can do to stop her fidgeting, so it may just be a matter of having just to accept it as part of her condition.

Take Care

TED
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Postby justme » Fri Sep 21, 2007 10:11 pm

yep sit fit cushion is the way to go...ask for OT referral.

My son has a sloped cushion and a writing slop which mean his back and shoulders are relaxed into a nice straight postion...before he hunched himself up for stability.

Word of warning get the supplying OT to tell the school the cushion is NOT for comfort for the botty! :roll: Number of times I have had to say that is unbelievable.
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Postby hannah » Sat Sep 22, 2007 10:39 am

I'm a fidgety person too. Just a thought though - I seem to be physically incapable of actually standing still for minutes at a time. After less than a minute my whole body is saying MOVE!!!! and I am unable to think about anything else until I go back to fidgetting. Trying to push through this makes me feel kinda dizzy and just wrong :(. I have never tried to remain still past this point because I suspect I would faint. The fidget feeling kicks in before I start feeling wrong, so in my case standing fidgets are necessary to keep my body functioning properly. It may be similar for her.
Also, many of my joints start feeling like they need oiling/seize up if I leave them in one position for too long - moving them before this happens comes naturally, and I think it is probably better for my body.

On the other hand, I appreciate that it can be distracting for others.

The wobble cushion is a great idea - but I'm guessing you don't need yet another person to tell you that :lol:

I wonder whether she would also benefit from a stress ball/hand therapy ball in lessons? That way she can fidget with her hands in a constructive way while, for example, listening to the teacher. Hopefully it would be less distracting for the other kids. (At work I always had a stress ball on my desk and it always got used when discussing things with colleagues)
HMSA Patron for Kids and Teens. EDS III. POTS. For various cartoon descriptions of HMS&POTS and ways to help others understand HMS&POTS see http://www.stickmancommunications.co.uk
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Postby justme » Sat Sep 22, 2007 10:51 am

my son has a koosh ball, much to the teachers resentment as she felt the 'soft toy' she provided was correct, OT said differently
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Postby Sandy L » Sat Sep 22, 2007 12:58 pm

Fidgeters:

Consider Tourette's syndrome. Contrary to popular opinion, only about 20% of people with TS exhibit coprolalia--cursing or use of foul language. The disorder is characterized by (as best I recall the formal criteria) at least three motor tics that last for at least six months and at least one vocal tic, with no alternate explanation. A tic is an involuntary action. The most common are probably eye squinting and nose twitching but almost any "fidget" that keeps coming back could be a twitch. The person often is not aware of the tic until after is has been performed, but sometimes there is a sense that that part needs to move in a certain way. Allergic tickling in the ears can trigger a tic consisting of opening and closing the jaw--that was the first tic I can remember having, at about age 10. A need to shift weight, move frequently, or squirm in a seat could fit the picture.

Vocal tics may be as simple as a grunt or groaning nose or may consist of words or short phrases that are blurted out. The interchange, "What did you say, dear?" "Oh nothing." is common. The phrase blurted sometimes is associated with a memory of something embarassing done in the past. In the third grade, my teacher sent home a report card with "Talks to himself" at the bottom. That was odd, because I wasn't aware of talking to myself. In retrospect, I wonder if that might have been a verbal tic of which I was unaware, since I wasn't setting out to say anything.

Severity is quite variable. I didn't realize that my symptoms were tics until one evening about nine years ago when my daughter called and said "Dad, I've decided I have Tourette's syndrome, and guess where I got it." There are some benefits to the disorder; people with TS often make connections more quickly than others, tend to have rapid reaction times, and, I have heard but not found the source, have a somewhat higher IQ, on average, than the general population.
I am a physician specializing in occupational and environmental medicine. I am not an authority on HMS or EDS, but find I have several patients with the condition and am trying to learn more.
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constant wriggling

Postby labrown » Tue Jan 29, 2008 2:58 pm

Hi - i've not visited this sight in while - got lots of reading to do.

But because i havn't got time right now - what i would like to know is this -
my 2 yr old dd has got HMS. She has for many many months now been wriggling from side to side - this happens more often than not. It is constant. Almost involuntary. It is preventing her from doing things. Her wriggling is so intense that whilst we are sat doing a puzzle or changing her little dolls nappy, she'll stop playing. She almost needs some to stop her from wriggling, she can't stop her self. When you pick her up her wriggling continues in your arms.

Do other children do this to this extent. She wriggles sat in a chair, in her car seat, on the floor in my arms, in the pushchair. She doesn't appear to be in pain, but she may look undomfortable. Her physio is visiting next week. She wasn't aware of how extreme her wriggling is and i'm waiting to hear from her peadiatrician. Is this wriggling something or nothing. Just normal behaviour?? not sure what to think. :think:

Help.
:wall:
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Re: constant wriggling

Postby TED » Tue Jan 29, 2008 10:06 pm

My one year old also can't sit still for a minute. She is constantly wriggling and moving. My older daughter is still at age 6 exactly the same it is a nightmare trying to get her to do her reading as she bumps and bops about. My eldest was the same until recently when she became a moody 11 year old (hormonal tweenager) and now actually sits for long periods of time. Chloe is the only one not like this, my 8 year old.

At GOSH they pointed to Carrie my 6 year old and said that she shows classic eds/hms signs because she fidgets and cant sit still for a minute. So apparently it is all part of the package of this condition.

Hope that helps.

TED
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Re: constant wriggling

Postby Retro » Tue Jan 29, 2008 10:43 pm

My youngest Mark who's a stroppy 12 (going on 40) can't sit still!

Lindsey
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Re: constant wriggling

Postby dawn barlow » Wed Jan 30, 2008 3:14 pm

Hi
My son Jordan who is 14 can't sit still, if it's not his legs twitching he's pulling his fingers and making them crack all the time. I really don't like that, but physio at GOSH told me that they feel quite comfortable doing that. His school has told him he can get up and have a walk round now when he really feels the need, and can't sit any longer. At least they are starting to understand.

Dawn
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Re: constant wriggling

Postby kit » Thu Jan 31, 2008 1:58 pm

My son is the same. Constantly wriggling and cracking his fingers. Daughter not quite as pronounced, though can also be very fidgety.
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Re: constant wriggling

Postby janey » Thu Jan 31, 2008 6:15 pm

I have never understood how everyone else in the cinema or theatre can sit so still during the performance. I have to keep moving and so when my daughter came along she was nicknamed the 'fidget bum' just like her mother! I do not have problems with my joints (unlike my daughter) but just have to move a lot.
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Re: constant wriggling

Postby christianne » Thu Jan 31, 2008 11:02 pm

Fidgeting definitely seems to be caused by the HEDS/HMS. Part of it is because the child (or adult-I do it) has to move to stop the joints stiffening up , or when standing to transfer weight from one leg to the other as the leg gets tired.Part of it is related to the poor proprioception that HMS kids have. Their brain doesn't know where their limbs are in relation to the rest of their body without constant movement to provide sensory feedback. The brain is thus constantly trying to adjust to where the limbs are and this causes fidgeting and also poor concentration. You can try putting crepe bandage on the arms and kneesto provide feedback or a band of neoprene round the trunk-a lumbar belt. My son hated this though and couldnt cope with the extra feedback. One thing we have written into his statement for school is that he needs frequent movement breaks where he can get up and move around in class. He tried a fidget ball but it seemed to distract him more! L a Brown I don't know how much your daughter is wriggling, is it just as she gets stiff in one position or is it like you say constant? Ewan's isn't constant , although standing 'still' is impossible. Could she be itchy? It's probably ,like the rest of us say, normal for HMS kids. Hope this info helps peeps with fidgeting issues.
Christianne
Aged 47, dx EDS 3,POTS, Coeliac, breast cancer 2002. I have 4 children: son 14 - HEDS & Coeliac, daughter 25 - HEDS, POTS, pernicious anaemia, daughter 27 - HEDS, Behcets syndrome, also daughter 22 & 3 grandchildren unaffected as yet.
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