Hopefully getting somewhere with dd1, possible low muscle tone.

[Marne]

6 months ago i spoke to the HV about dd1's legs and herd nothing. Dd2 had a check up last week so thought i would ask again as dd1 is getting upset as she finds it hard to run and keep up with her friends and has also been having pains in her ankles.

Anyway i have just had a phone call from the community school nurse to say she is looking into it and will phone the school today , she said dd1 may need to see OT if there is a problem (which there deffently is), she said it could be growing pains , i tried to tell her that dd1 has always had problems with her legs and movement and struggles to walk far.

I'm still baffled by what the problem could be, at first i thought Dyspraxia but she doesn't tick all the boxes (she's not clumsy and has great pencil control). Its almost as if she has no muscle, she can't pedal a bike, struggles to push doors open and when she runs she looks really stiff. Could it all be sensory from her Aspergers?

The nurse suggested i take her to the GP, i know i should have taken her a long time ago but its a night-mare trying to get her there as she hates going to the doctor.

She sounds quite similar to my dd who has low muscle tone especially in her trunk. When she finds something hard or gets excited, her tone fluctuates to high so she looks stiff e.g. running, jumping etc. Her muscle tone just 'isn't quite right' although we have never had an official dx e.g CP.

Like your dd she isn't clumsy looking, just a bit droopy and slightly unsteady on her feet at times. She also tires easily and can't walk too far.

We have OT support although visits are a bit few and far between tbh. Can be helpful for ideas to build up strength and tone.

thanks Moomoo, i had never thought of CP, just googled it (which is not a good idea) and i had no idea that mild CP could present as week muscles. Now i'm racking my brains about dd1's birth.

I know that something is not right with her (mums feeling) but its only more noticable now she is noticing IYKWIM.

I will try and get her to see the GP and see what he thinks.

Hi,
My daughter is 3 and has Hypermobility which gives her weak arms legs, trunk basically all her joints and limbs are soft and floppy and she has trouble walking properly and keeps falling over and she walks like a baby that has just learnt to walk (top heavy) Maybe you could look up Hypermobility/Hypotonia and see how the symptons compare with your daughters
Anita x

Hi Marne,
although down syndrome my ds has severe hypotonia and spd among others. He didn't stand until nearly 5 year old, then came the walking. He's nearly 9 and just learnt to crawl. Obviously doesn't run, jump ride bikes etc but an OT can help with all this.
HTH x

ds has this to he walksa little bit but isprone to falling over , but 10 yards or so is about his limits .now has a rather funky new wheelchair ,he is 4.7 but does have other physical issues going on

Hi My DD2 was like that always complaining about walking very far etc etc long story but it turns out my H's family have Myotonic Dystrophy. Now my grandson was born with the condition he has floppy joints always falling over, cant walk very far. I always recommend people have the blood test for this condition as it is often misdiagnosed, usually as dyspraxia, hyper mobility or something similar. It is a genetic condition but often the first sufferers dont even know they have it. It is worth a check.

Have you thought about horse riding as a way to improve muscle tone? If you contact the Riding for the Disabled Association (the name is very off-putting, it can help loads of different people who just wouldn't get the specialised help or attention provided by a mainstream riding school) Some groups will have hippotherapists - specially trained physiotherapists who will work with your child on set exercises on horseback. Even if a hippotherapist isn't available, horse riding exercises the very muscles used for walking and can improve core stability, strength and general muscle tone, as well as coordination etc. If you google Riding for the disabled you will get their website and can get in touch with a Regional contact who will tell you the nearest group, or just look in the phone book as many will be listed there. Any questions feel free to ask (am experienced and well qualified RDA coach)

I wish i could get her on a horse , her sister would happily go (i put her on a horse last year and she loved it). Maybe i should try again with dd1.

Regarding what Oddjob says above, check out the Muscular Dystrophy Campaign website for info about various muscle conditions but do not let them alarm you, many are v mild. Might be worth asking the GP tho I should say that in my experience GPs see an average of one MD sufferer in a career ... if still worried ask for a referral to a specialist muscle clinic

intresting oddjob this sort of thing has been thrown into mix for ds especially as he had major problems recently even lost ablity to sit up for while even now he isnot sitting properly.

Cloelia , thank you think im going to check out the board

The Myotonic Dystrophy support group has its own web site, its headquaters is in nottingham. As with any condition it can be scarry and despressing but each case is very unique. Our prediction from the top people for my DGS was very bleak, but he has done every thing they said he wouldnt just later and in his own way. It really helps though to get a dx My main piece of advice would be to work the muscles while they are there as best you can ie. physio and SWIMMING/hydrotheraphy.

it has made fr intresting reading and ds does fit it in lots of way .Am going ask when we next see neuro .He is convinced that we are looking at more than low muscle tone and hypermoblity
.Note am not saying these are not disabling in their own right.

though confused as lot of ds problems were noticeable from birth but not till he was turned 2 did anyone listern.He has progressed physically but in last 6 month or so that has stopped and been told that its as good as going to get .

Going to check out this site later. Maternal grandmother has low muscle tone, Mum has low muscle tone, Mum's brother has low muscle tone, my DB has hypermobility syndrome & low muscle tone, DD has Hypermobility syndrome & low muscle tone, DS2 has hypermobility, hypotonia & low muscle tone. They have all got to a point (usually about 7yo) where anything after that makes no inprovement. My DC's were dxd at 9mo for DD and 7mo for DS2, paed said it was V.V. young to be getting those dx's but it was that severe that it was definate. I was told for both DD and DS2 that they would never walk or talk (due to muscle tone around their mouths' being so low, neither had bottles, because they were either spoon fed their bf's and then cup fed, due to sucking muscles not being strong enough). They both walk and talk, albeit not well, very short distances, and we still have drool problems when they get too tired to concentrate on it.

Loudlass - please do check the web site as I said before Myotonic Dystrophy is often misdiagnosed and all the things you have said sound to me like classic symptoms especially the fact that it runs in the family.

oddjob, you probably know more than I do about this, but I think also it tends to get worse generation by generation which is why it is not picked up till it is really "noticeable" in a child/adult. the preceding generations may never really have had any significant problems with it.

oddjob I been looking at the site and ds pretty much fits it

Am going to push for testing

Cloelia - I Know as much as I need to know and yes you are right the symtoms do get worse as it goes down the generations as the faulty gene repeat gets larger too. My Daughter was DX at 11 yrs and then the rest of the family from then on. I am pleased that you are going to push for testing I would be interested to know how it all turns out. I am more than willing to talk to you if you want an honest opinion of what it is like etc, but please remember no two people are the same even though they have the same condition and from atalking to others the treatments available( not for the condition but for the effects - there is no treatment for the condition itself) vary from area to area. But then doesnt every thing !!!!.

another ne where it seems to get worse , i suffered with hypermoblity etc butwas toldjust one of those things,all my dc have problems with tht and mucle tone .But Ds is more severley affected

It is possible that you have the condition mildly, they have only been able to test for the faulty gene for about 19 years now so before that dx was difficult.

yep im well past 19 hell my oldest ds is almost 16.

is it possiable for dc to have at different levels?

Pheonix - yes it is possible for children from the same family to have the condition but to varying degrees, both my DC have the condition as does another family member but they are all different. One has more of the facial features and lack of muscle in the face and another has bowel and bladder problems with severe dyslexia then the little one was congenital so has the whole shebang including being born with Tallapies (club feet to you and me).
Pucca just sent me a link on another thread that may explain the condition better. I am new to MN so do not know how to paste the link but it is under the thread on sleep Apnea - another symptom of the condition if you check it out you can check out the pages.
Please come back to me if you want any further info I am more than willing to share experiences.

Cloelia - my mother and I have been saying EXACTLY that, that it seems to be getting worse with each generation, and I'm very concerned at how bad it will be when my DC's have children....

DS2 was born with taliepes.....AM going, RIGHT NOW to check out this site, and text my mother the name of it.....will post again when I've looked....

OH.MY.GOD. I'm crying here. I.....

oddjob .

Just read the link and can see ds inlotof it though he was over 2before gp woul refer us to anyone ,this despite not sitting up on own to 12months ,poorhead controll. not walking till 3 and now at 4.8 struggles still is mobile indoors but bad days/good daysand older gets more baddays he has.hehas a double squint and poor core muscles so leans over.

ds alsohas muscle problems in face but this beenput down to verbal and oral dyspraxia also affects chewing .
Intresting as ds hasgoodgrip for undoing jars etc butcant hold a pencil.Also has got bladder control inday not night, but no bowl control.

And has physically deteratedfrom wherehe was 6 months ago topoint bad day now needs chair indoos or stays sitting

opps sorrythatwas long

Am going push for that blood test simpleway rule in out