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low muscle tone/feet problems/lots of falls - orthotics or Piedros?

(14 Posts)
hazeyjane Fri 17-Apr-15 20:30:55

Ds (4.9) has low muscle tone and unusual feet - small but very fat, and kind of flipped outwards (this is likely to be due to a genetic disorder). He can walk, but struggles with mobility, has an unsteady gait and tires easily. he often uses a sn buggy. He also has mild hip dyplasia, and this combined with low tone in his trunk, causes him to walk with a sort of swivel, it also leaves him vulnerable to partial subluxations.

Up until 7 months ago he always wore piedro boots, but his physio decided to try orthotics, as she hopes that will encourage muscle strength.

We have struggled with finding shoes to fit the orthotics and his unusual feet, the first boots we found fitted well, and had a zip up the side. Unfortunately as his feet roll in quite considerably, the zips broke. I bought a pair of shoes last week as an emergency measure, and the only shoes in the shop that would fit him - unfortunately they are quite shallow, so ds keeps taking the orthotic out (and hiding them!) to make them fit better.

I phoned the orthotic department today and their advice was to buy some cheap shoes, they recommend Asda, as they make quite roomy shoes, and to try and get a boot style.

The other thing is that he is falling more frequently, 2 or 3 times a day, he has started limping, and being reluctant to climb the stairs. Today he fell at school and split his head, and cut his nose. He complains of a pain in his knee that looks swollen. Dh also thinks that leg feels stiff there has always been an intermittent stiffeness to his leg, which we have never got to the bottom of) I have tried to call his physio (3 times and an email) but she has not got back to me.

I am hoping she is going to call on Mon, and in the meantime I am going to try and keep him from putting too much weight on the leg which is obviously causing him trouble.

My gut feeling is that he still needs the Piedros for the support. Has anyone else had any similar problems with regards to orthotics?

Yes.
My DS was (is...still!) very similar. He had Piedros from 18m-4, then they tried to put him in orthotics (to save money I suspect..) They didn't work.. his low tone and pronated ankles meant he just rolled over them. So then they put him in higher orthotics. These helped a bit but he started to have an even funnier gait.. started to walk with a slight crouch. It appeared that he was having to work too hard to walk in them and he was getting tight hamstrings and achilles tendons.
SO.. orthotics IN Piedros for a while, and finally we saw a new physio and orthotist who stopped saying 'it's just low tone' put him in full AFOs (splints) which he has worn ever since.. with success. He is still low toned, pronating with intermittent tightness and if he goes more than a few days without his walking is not good..and he gets hip pain and knee pain. He is 17 now and happily wears his afos (you can't see them under trousers anyway) because he walks best with them on.

I would be persistant with the physio..these are NOT working and can you see the orthotist please to discuss other options. My DS2's feet are a hideous shape from his low tone and without the support he has had I think they'd be even worse :/

Ineedmorepatience Fri 17-Apr-15 21:55:21

Dd3 is hypermobile in all her joints and she wears orthotics with kicker boots. she has shortened her achilles tendon through tip toe walking!

The podiatrist is altering her orthotics with wedges to try to improve her gait , I dont know if it is working but now she is complaining of pain in her hip and lower back sad

Phone call on Monday! To the podiatrist and the GP!

Hope you can get sorted, the falling is awful Dd3 still falls with orthotics but not as much as without them!

Whatsthatnoise Fri 17-Apr-15 22:27:27

I have the same issues with dd her actual foot measures H width add in the orthotic and its off the scale sad I can usually find trainers that fit, she has adidas just now and they are perfect. I look for nice deep school shoes all year and if they look good just buy wether she needs them or not.
I find asda too shallow, have had some nice canvas styles from primark in the past but I'm not sure what they are like for boys.

JellyCurls Sat 18-Apr-15 07:33:04

My DD has hypermobility in all joints and very low tone. We wear orthotics and calf high piedros as without both she falls constantly. They tried to get us to buy normal shows but agreed to piedros again when we couldn't get anything to fit her. DDs feet are super skinny.

Sounds like your DS needs more support to me- good luck

hazeyjane Sun 19-Apr-15 10:48:52

Thankyou so much everyone.

Off to find some cheap shoes today to put the orthotics in, he is reluctant to walk at the moment, so not sure how they will manage at school tomorrow.

Will hound his physio for an emergency appointment, and talk about the possibility of going back to Piedros.

Very interesting to read about your ds, Medusa, he does sound similar to ds!

hazeyjane Mon 20-Apr-15 19:39:00

Ok spoke to the physio today (finally!) She said that it does sound as though he needs to be back in Piedros, but has made an appointment with orthotics to see if they want to suggest something else (I guess this will be something going up the leg)

I could see him doing pe today, (I work next door) and he spent the whole time, hobbling around holding his 1-1s hand, he has wanted to be carried since, as his knee hurts.

youarekiddingme Mon 20-Apr-15 19:44:39

Hi Hazey my DS has orthotics and piedros ATM. He needs orthotics and boots but because of his over promotion and low muscle tone he 'stretched' some ligaments so needs the support whilst they recover and support of orthotics to stop further damage. I was told he would have this set of piedros until his feet grow and then just orthotics.

Has your DS ever tried AFO's?

If you can't get piedros there are some good independent retailers that do orthotics boots. DS has a pair of casual boots from a lady near me - they are made abroad.

You can also buy Piedros yourself...
www.gilbert-mellish.co.uk/Shop/piedro-childrens-orthopaedic-footwear/2.aspx

I have done this in the past to give DS2 a break from his splints.
They are expensive however!

hazeyjane Mon 20-Apr-15 22:20:46

Well we probably could have bought a pair with the £100 we have spent on shoes in the last few weeks!

He hasn't had AFOs but they have been discussed in the past.

youarekiddingme Mon 20-Apr-15 22:38:17

You can look on eBay/Amazon for piedros. Also they do sales quite often.

The place I got DS shoes from is Eva Martin. Worthwhile searching her - she's based in Portsmouth and read what she offers. (The physio around here recommend her shoes - they are about £35-40 a pair)
You might be able to then find something similar local to you. Or order some to try and return! I've also found ricosta (? Sp) and geox are recommended by parents of dcs with interesting feet quite a lot!

hazeyjane Wed 13-May-15 11:58:02

Just wanted to update you all.

Ds saw the orthotist today and he agreed that he is not getting enough support in the orthotics, and has done a cast fro DAFOs. He thinks he has some tightening in his left leg, and foot, which is always curled in, so is putting extra supports in that side. He also noticed that Ds is starting to walk on tip toe which is causing some (more!) twisting of the toes.

Will pick them up in 2 weeks and see how they go!

Ineedmorepatience Wed 13-May-15 12:43:21

Good luck hazey.

youarekiddingme Wed 13-May-15 18:32:10

Glad you had an appointment where someone listened, agreed and acted.
Hope the afo help.

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