piedro boots -whats next

[Phoenix4725]

ds has been wearing piedro boots and insoles for a while but is still having problems and going over on them ,Physio has refered him back to orthotics as reckons he neeeds something more any know what else they might suggest he has hypermoblity and low muscle tone

thanks

no direct personal experience, but would hazard a guess at splints?

daffos or affos?

erm not sure

Splints are no problem - my dd got to choose the pattern and she is very happy wearing them

thank you can i ask how highupthe leg they go and do you wear them with normal shoes or will he still need wear piedroboots to

should add he is totaly flatfooted to boot to

My son is low tone and hypermobile too.
He started wearing Piedros as a toddler (he walked very late) then inserts in the Piedros then we moved to SMOs.. ankle height wrap round orthotics.
When we was 6 we moved to full height hinged AFOs (behind the knee splints) and he has worn them ever since.. he's nearly 12 now.

Full height AFOs are mst often used in children with CP who are high tone not low, but for my son they have been very effective as my son has poor dorsiflexion..his feet don't lift off the gorund well..and he doens't trip with them on.

They look a bit and they do scream 'look at me I have a disability' but they do the job!

I managed to wangle two pairs of AFOs this last casting.. short ones for when DS is in shorts (I'm vain on his behalf) and long ones for most days.
The AFOs also support his flatter than flat feet well.

DS feet are quite a funny shape now because inspite of the support of the AFOs /SMOs his feet have sort of collapsed..but they would have been even worse without and he walks further and better with his splints on.

Most orthotists do either splints OR Piedros so you may need to shop for normal shoes If you do.. get the cheapest widest trainers, usually at least a size bigger than normal. Don't bother with Clarks.. the afos are supporting the feet not the footwear

Hope that helps
Here is link to DS's website.. if you click on 'boot's you'll see the splints etc..
charliesmomuk.weebly.com/index.html

cant seem to linkto it takes me to a earlier posting

how old was your ds when he walked ds walked at 2,6but still has a wide and odd gait.and he does not really lift his feet up either would and does tripover fresh air

DS2 was about that age when he started walking but he was very unsteady for a long time..and to be honest his walking is not very normal even now.. (sorry probably not what you wanted to hear)
He is uncoordinated and kind of lurches along. he fatigues very quickly and we use a wheelchair for longer distances..for example if we were out for the day or going shopping round town we would use his chair.. He doesn't need it at school (but then he's not at mainstream so it's all nice and level and not much walking) it's just for anywhere he will tire out before we do!

Do you have a Major buggy or similar for your son? We have always tried to balance encouraging DS2 to walk as much as he can, comfortably, with accepting that he is not 'lazy' but find it hard.
One of our physios once explained having hypotonia as like walking through treacle all the time.. it really helped his teachers understand how much harder it was for him!

phoenix, ds2 wears dafo's & they have helped so much.
You can have a look at the meet up!

They may not suggest splints for hypermobility as they can also weaken the muscle strength if worn too long. It will probably depend on both the doctor in question and the degree of your ds's hypermobility.

Dd has a wheelchair that she uses for long distances and for flare-ups, physio has been good, and other than that she is just having to learn to pace herself.

Ds has piedros with insoles, but then he has quite a high instep despite being hypermobile.

sorry, that last bit didn't make sense: what I meant was, he doesn't seem to need splints, but then he has quite a high instep

Macforme

yes we have a major but wheelchair services have ordered a wheelchair for ds .

truth I pretty much figured hes always going need something for distance and bad days as he suffers with spasms

Anonandlikeit

thanks that be great will give mesome idea .looking forward to the meet up

cory
ds has both lowmuscle and hypermoblity he does not do anything by half

his instep is non exsistant and he goes over a lot ,seemsbe his hypermoblity is pretty severe and has manged to dislocate few of his hoints already

opps that be joints

Hi everyone. This is my first time in this department.

My 11mth old PFB has just been diagnosed with Spastic Diplegia Cerebral Palsy.

His adjusted age is 9 1/2 months as he came 7 weeks early.

I'm trying to come to terms with what you are all talking about, the abbreviations, etc.

Charlie only started crawling three weeks ago but does so well but if you pull him to standing he is on tip toes... the specialist knew straight away and said "textbook", but gave me nothing to take away with me but a hand drawn sketch of a brain, spinal cord and leg and the term "Spastic Diplegia".

I have no idea what to do next and have no information apart from Google.

I want the best for Charlie and thought I could ask you guys what you might recommend.

Welcome to the SN board! Congrats to baby peanut for learning to crawl. There are a couple of mums on here with children with CP, look out for Riven amongst others. This thread probably wasnt the best place to intro yourself as they wont know your here,(sorry). Hopefully somebody will come along with some advice for you soon.

hi peanut try sticking as seperet post b ut i heartly reccomend thsi bunch o here all round for good advice and large virtual glass of wine cupof coffee when things are bad

Thank you monstermansmum and phoenix.

I'm at that stage where it's this huge black cave in front of me and don't know what to do.

Advice of where to go helps. I will post a new thread but keep an eye on you guys too.

Thanks for accepting me and caring.
xx
PS - I am having a very large non-virtual glass of wine.

Phoenix, your ds sounds very much like my dd. Hypotonic and hypermobile. So that wheelchair sounds like it may be needed. Dd finds having hers makes it easier for her to be active; she has the confidence to go on school trips etc because she knows she's got the backup. SO it's a Good Thing imo.

(she's in it all the time atm because she overdid it on holiday and ended up with bursitis in both knees- another one of the joys of hypermobility)

Cory
outch yes remember you saying was genetic to same as it is here though eldest ds and myself not to badly affected but ds 3 is .Know you said it l;ooks like your ds is going have the same

yah ds really is struggling with walking anykind ofsdistance cant run/kick a ball either
but hes a pretty happy chap overall

I went up on Friday to have ds diagnosed. And I'd got the wrong day! It's next Friday.

Hi Phoenix,

My dd's 6 and has piedro's for hypermobility due to marfan syndrome and has tried several types of insoles to try to stop her ankles pronating. None so far have helped, in fact, the most recent, hard moulded plastic pair have cut dd's feet to shreds because dd's feet have next to no fat pads on that normal feet have. We took them back, and the orthotist put sticky felt on the parts that rubbed but they still aren't any good.

We're back at orthotics at the end of the month, and we were told that they would be looking at "going higher up the leg". I think he meant an AFO, but I'm not sure. We've already been warned that they may never be able to totally correct the pronation, but as long as they can prevent some of the damage to her hips and knees it's got to be worth a try.

Like a lot of the other posters dc's here, dd has a wheelchair so she can rest as she needs to.

yes we started with the hard moulde pair before piedros and samething then piedro and piedros and then insoles so feeling were oing same way physio spoke to orthortics and asked for his appoint,ent to be brought forward .

They then moved it from May to June

yes been warned about his knees and hips being outof lined

Phoenix, Sorry, don't come on here regularly enough - did you ask earlier how far up the leg splints come ?

My dd's are foot and lower leg - and there's no way you can get tight-fitting piedros over the top. Her splints replace orthotic footwear, I just buy cheap loose trainers to go over the top. You can't get most shoes on top of splints.

hope that helps.

thanks