hypermoblity and over flexation

[Phoenix4725]

ds new orthtics consultant seem to be paticulary concerned over the amount of over flexation ds has in his knees and ankles along with therolling over which is leaving him walking on his ankle bones.

Does nyone else have dc with over flex in knees as he was quite admant that if somethings not done ds knees going to end up shot to pieces hes already dislocated one

Hi Phoenix this was mentioned by pead at dd's appt yesterday. it was her first appt and they have said that she has a clicky left hip that she is having a ultrasound for..

the thing i noticed with dd is that she will often sleep with both legs streched out forward and she can lay her body flat too the floor?

looking at other posibilitys aswell so having an MRI.

and EEG for epilepsy.

did they say anymore to you about what they will do for DS?

ds has got to have afos full size rathe rthan safos to stop him over flexing on his knees and stop him rolling over .Oneof ds hips is out of line but they are just going t monitor it for now as any intervention requires majour surgery.

Yes ds sleeps streched out but then some nights hes curled in funny postions.and when sat on floor he has his feet turnedto theide but flat on the floor like a quater to 3 postion looks uncomfy

We are still waiting on mri scan as itslooking moe than the GDd

how long is wait for MRI?
How old is your DS?

is there anything else you notice development or posture wise?

as havent said what they are looking for on MRI with my DD just that they have a list.

would be interesting to know if there anything simmiler to your DS and my DD.

Is he having physio?
Really he needs to build up strength to stop it from happening.

My ds did a lot of the walking on ankles thing which improved as he got older but still comes back when he is tired.

our physio wont give us excersise program even though i asked and orthtics have .

Ds is 4 now and he actually struggles to walk so relys on hiswheelchair and whn done to much he crys his hear tout at night when gets cramps and next day hardly wants t walk and did pu one dr staright when he said maybe ds acting up im likeyour really think 4 year old would sit down if h coul run around

.Did they look at your ds knees chopstheduck ?.

were going to get afos next week see i an head of some of thedamge hes causing to his knees

Ds has delayed devlopmnt hes 4 but more like a 2 - 2.6 years old in lot of ways he defintley has major problems with his core muscles being weak to so he slides down a lot and leans to the left when slumping sitting

your poor ds, he really is going through the mill.

A lot of things do sound like my ds. he also has problems with the slanting because of lack of core strength, and apparently it can be linked to hms. The pains and wheelchair use also sound like ds. I have to be careful to pace ds so he doesn't reach that stage, but he has the chair for backup and to stop him getting too tired.

we're on the waiting list again for the physio. He is getting lots of OT though, and they are working on core strength, upper body strength, etc.

I feel so cross for you that the physio wont help, as it is exactly what he needs. Is there no one else you can go to? OT, paed?

we see ot once a year shes crap even had to write serious letters of complainteven see one.only ot excersises i have is from bibic.

Paed lol we was under devlopemental paed whos last month at6 monthly review informed me she will be no longer handling ds case as goingtoschool so he will come under even crappy non exisatant school team.mind she did carry out her devlomental checks in 15 mins including physcial one.

Am going to go see my gp and try get referal to another hospital .We had to go outside the nhs for orthotics because of waiting times

good luck with the referral. Am racking my brain here trying to think where else you could get any help.
At least your gp sounds a bit more promising, ours refused to acknowledge any sn at all, and said in a very snooty voice 'And why is he attending OT?!'!!
We have our paed on a as and when needed basis. There must be some sort of system for children who need paeds at 5+ in your area.

I have a terrible memory but doesn't your ds have a gdd dx? surely they need to ecplore that more.

yes he does have GDD but nope she was not intrested in why said might never know lol course we wont if dont look

There are paeds but each seems have their own thing they deal with .his problems dont fit into one nice box

oh I so know what you mean!

ours was jsut lookign for autism really, took ages to get her to agree to anything else! It kinda felt like a processign plant, they would assess for autism and process accordingly.

yeah we have orthotics, urologist, salt , ot and physio and ped for eeg and there all chocolate tea pots

we're on a run atm so I'm frantically touching wood but ikwiym. is orthotics who deals with afos, piedors and the likes? I want something for ds, he has so much pain in his ankles and hips, i think he could do with some support.

if you have msn mine is [email protected], if you wanna moan/sceam/chat, I can mange likewise

will email you but its chaos here today got 5 under 6 .I have snuck of for 2 minutes.

Yes its orthotics that deal with afos and piedros here they are majour slow about doing anything ,I have had to opt out of the nhs system seen private one.

But have found you can buy piedro boots direct from www.gilbert-mellish.co.uk/products/index.php

even tough says prescription only but they are £110 a pair

Phoenix 4725

How did you get piedros from them without a prescription?

My son's piedros are so tatty and will hardly fasten anymore but they wont give him a new pair as they still fit!

Would love to get him a new pair from here but don't know how to go about it.
Thanks

I called gilbert and mellish and just asked them and lady on phone conformed long as no adaptions needed can self order.

least one bonus of self ordering will be no hassle if want more than one pair ie sandals for summer.downside the price

Have you got a date for MRI yet Phoenix?

SOrry to hear about the worsening of Ds's joints.

nope were still very much in limbo , not helped as ds has lost devlopment paed she discharged him as going to school she suseless .But all the other specialists are like hmm who do we pass our comments to proessional wise.Think my poor Gp going struggle