Hypertonia in ankles

[fanjoforthemammaries7850]

Just been to see physio with DD (first time in 2 years ), and am now even more confused about what is wrong with DD.

DD has general low muscle tone, and used to have to wear Piedro boots because her ankles were so bendy and floppy.

Now, apparently, she still has low tone all over but her ankles are stiff and have high tone.

She doesn't have CP as her brain scan was normal, but she looks like she has it and the physio was surprised she doesn't.

I don't suppose anyone has any ideas?

Going to write to neurologist as they have just totally left us hanging yet again.

Dd1 (AS) is waiting for a referral back to the pead, her ankles are very week and her feet turn in at the ankle, dd2's feet/ankles turn but are not week. We thought dd1 might have dyspraxia as low muscle tone can be a part of this but no one agrees with me as her hand writting is fine , we have been trying to get a referral (and someone to take it seriously) for 2 years, we still have no idea what is wrong with her, she seems to have low muscle tone and is quite stiff in her legs. I few people on here have mensioned CP to me but we have never been offered a brain scan.

I think low tone often runs along side other conditions such as AS/ASD and i know a few children with ASD who have hypertonia and low muscle tone.

I hope you get an answer soon, its hard not knowing what is wrong with your child .

she has always had hypotonia (low muscle tone)..but now she has hyPERtonia (HIGH muscle tone) in her ankles..which is more usually found with CP...which is why I am confused. Her ankles are now very stiff wheras they used to be like your DD1s ankles.

oh i see she has stiff legs..stiff legs is more high muscle tone than low, low muscle tone=floppy. My DD is extremely floppy except for her legs which are now stiff..its confusing..her MRI of her brain was normal too.

anyway, sorry, I think I misunderstood YOu and thought that YOU had misunderstood me, but you hadn't..

I'm just generally confused!

And DD just fell asleep in her dinner, have to wake her soon or she will be up all night.

(she is in bed not sleeping in her dinner )

My DS2 is like your DD. He used to be purely supernoodle...floppy all over..wore piedros from very early on and could be bent in all directions..hypermobile too. We were quite surprised a year or so ago to discover that while his upper body is still low tone, his lower body has gone the other way..high tone. He now has tight achilles, tight hamstrings and fixed hip flexion deformity ..everything is tight! No answers to why, and he has stayed in afos since he was 6 which used to be for his low tone and now combat the higher tone! He also has ASD. He doesn't have CP according to his MRI years ago..

Have you been given stretching exercises to do? We have hamstring and achilles stretches to do and I do think they help a bit, tho to be honest he's never going to be elegant on the move!

He's never ticked any diagnostic boxes very neatly..just likes to confuse them I reckon

Thanks

Apparently we will be getting stretching exercises next week!

I am losing faith in MRIs, my DD just seems so like she has CP and had a difficult premature birth.

But I know deep down it must be right and the damage would have shown up!!

You must have been through all this too!

Actually the MRI thing is a bit of a red herring.. it's possible to have quite severe cp and a perfectly normal MRI ( eg my friend's DD has very severe cp.. no control of any limb and her MRI is perfect..) conversely you can have a pretty dire MRI and yet be quite functional... it's a limited tool...but unless the CP is really obvious is does tend to be the dx standard..

In the end CP is just a label to describe an impairment of movement, however I do think it helps to open doors to services , DLA etc because it's a know description, whereas 'bit floppy, bit tight, ' doesn't sound quite so impressive.. I have often felt over the years that a clinical cp diagnosis would have helped my son to access services better. We certainly found that his formal autism dx made a big difference in how he was treated..even at school (mad as he's been in sp school since he was 4 and he was 9 before he was formally dx!!)

Labels shouldn't make a difference, but they do:(

My DS is 13 now and his physical difficulties have evolved over the years... hypotonia, then + hypertonia, now adding kyphosis due to his growth spurt.. 'delayed' then 'SLD' then 'MLD and ASD'..
I'd have loved one dx to cover it all!!!!!!

My DD is always being assessed for high tone as she is at risk for CP after brain injury at birth. Her physio says that many children who present quite suddenly with high tone in legs/ankles have simply grown faster than their muscles can keep up with.

DD has low tone in trunk, hypermobility and fluctuating tone in limbs although no official CP dx as yet. Basically she runs funny and struggles with her fine motor skills!

kidsncatsnwine - Thanks, that is helpful. I don't understand why they have ruled out CP in my DD then, given she has mixed tone?

mintyfresh - that is also interesting, my DD is super-tall for her age and sprouting like a weed!

Growth spurts DO affect tone. DS gets tight during a growth spurt, then gradually loosens up a bit. Then he grows again and bang, his achilles can't keep up and his hamstrings give him a down hill skiers bent knees for a while!

We get cursory physio.. they check DS over when the orthotist comes to school to do his AFOs and they supply exercises but they don't DO much in the way of hands on which is a bit of a grumble of mine.. I had to ask them to check his spine because I could see it didn't look right...oh yeah it's not right..off to the orthopods we go...

I think superfast growing kids DO struggle with their tone. DS has always been tall and very thin, and at just turned 13 is nearly 5 ft 11 (orthos predict 6 ft 4+!!!!!!) and the adolescent growth spurt is trashing his body at the mo:( He is so thin (just hit 8 stone) and has no strength at all. Blooming gangly to push in a wheelchair too!

It may be that when your DD's growth spurt slows for a bit her tightness will improve (hopefully) but keeping a close eye is very important!

that could be it.↲am a bit worried as I think physio will only see us once more without a dx.↲Have sent sternish letter to neuro asking for some clarification on the dx process as we have just been left hanging for months again.

i think they are going down the ASD route again when before they were looking at her physical issues,but really it's both.

Fanjo - why will physio only see you if you have a dx? That seems ridiculous as many kids having physio aren't dx with anything - in fact our physio says most of her client group are NT children who have just grown too quickly!

i don't know,it's basically what she said though