Piedro Boots - do they really help?

[2under2]

Dd has had Piedro boots for about a year now. I constantly get told off by people (Portage worker, Riding for the Disabled physio etc) about her not wearing them all day long. My main problems are that her balance with them on is quite poor - she can take a few unassissted steps when barefoot but cannot take a single step in her boots. Also, I don't like the idea of her soft little feet crammed into these big & bulky boots all day long. I never wear shoes indoors.
On the other hand, her gait is better with the Piedros, she bends her knees well and takes 'proper' steps - but only with support. I've got a book on gross motor skills for children with DS which is very good and does not recommend shoes until the child is walking well. So, anyway, any opinions on this please?
Off to the shoe clinic now to get a new pair...

When dd1 was small she was given these too, from about the age of 9 months! Same story, she had to wear them the whole time, and I felt the same as you. They are supposedly specially shaped inside to improve positioning and muscle tone, but tbh although dd wore them for about 5 years I never noticed any change. She stopped wearing them eventually and there has been no difference, but that could have been because her foot problems were borderline re: wearing them iyswim.

Interestingly, I asked about them for ds2, and the bloke who makes his gaiters and shoe inserts does NOT recommend using them at all! Can you not do some sort of compromise, and wear them just for part of the day in the house? Or alternatively you could just fib and pretend she wears them?! They are quite heavy aren't they? I remember dd had a bit of a fight before she was able to lift her feet properly to walk in them.

piedros really help dd but she has them for hyper-mobility in her feet and ankles. dd has specially made insoles, taken from a cast of her feet, which give her the support she needs. Interestingly the orthopedic surgreon said she could have these in peidros or comercial boots it didnt really matter, he said most people only preffered piedros as they were easier to get on and off.

My son has been wearing piedro boots until last week. He has had them for 3-4 years. IMO they have helped my son as he would not stand at all. His legs would always curl up. Since the piedros he will still curl his legs but no as much and alot of the time he will stand (with support as he cannot walk). Definite improvement for him. Good luck with whatever you decide.

Fio my daughter has hypermobility problems too. Actually the oldest three do but she is the worst. She's 11 now, and I actually liked them myself, just not sure they did her any real good. She had inserst too. I guess it's hard to tell unless she spent the entire time wearing 1 piedro and 1 run of the mill! Her feet are still as flat as ironing boards though.

lou have you had any explanation as to why your eldest 3 have hyper-mobility? I had been trying to get dd refered to the orthopedic surgeon since she was about one as I was sure it was a problem with her feet and ankles but was always refused, even when she missed the milestone for walking. Unfortunely dd broke her leg and whilst she was getting plastered up I broke down and started crying, well my ds was only 6mths-bit depressed and my sis had died a couple months previous so I was very very emotional, the nurses felt so sorry for me they made me an appointment with him for when her plaster came off. When we went to see him he said he was suprised she could even walk- but he is not a very forthcoming man and I have not had a straightforward answer to what has caused the problem. I asked the paed she said its just in the family.

Sorry I have waffled on but I am very sure my dds problems are caused by the birth(poss cp)and the hospital dont answer questions as they may be negligent, dont know. Infact the thing that has always made me more suspicious is the fact a consultant came to see me a day after dds birth whilst I was on my own to tell me the hospital wasnt negligent. I wasnt in a fit state to answer back.

We will be moving areas soon so maybe we will get some more answers.

Oh Fio I have trodden that path!

Firstly, my children have a collagen deficiency called Ehlers-Danlos Syndrome. It is hereditary (via me and my mum) and among other things, causes hypermobility of joints, easy bruising, slow healing, keloid scarring. There are a few different types of EDS, and the symptoms depend on which type you have. My oldest has it worst of the 3, she has broken a wrist from over extending, bruises like a peach, and recently we discovered she had suffered a partial dislocation of her knee ( following in my footsteps). The other 2 aren't so bad, but you can feel the muscle laxity around the joints. It's one of those conditions that isn't very common, so doctors get very excited when they chance upon us, ask for students to examine them, try to pretend they know a lot then look stupid when I know more!

As for the hospital denying any wrongdoing, don't even start me there! Tried to sue Hammersmith Hospital years ago for the problems my dd1 was born with (heart defects , hydrocephalus, valproate syndrome) because they failed to inform me of the risks of the anti convulsants I was taking during pregnancy. In fact not only did they not tell me, they positively said there were no associated symptoms or syndromes connected to the drugs I was on. total lie I now know. Anyway it's amazing how the whole medical world suddenly know you when you are trying to sue , and bring it into their conversations, whether relevent or not. Needless to say we got nowhere. Since this there have been many more mums with chidrena ffected by the drug and warnings are now on the leaflets, but not at the time. Am currently in another half hearted attempt to take them to court again but I know it won't go anywhere. Dh basically lost his career because of all the time he had to take off for dd1 in the first couple of years and it still hasn't recovered (he's self employed).

If you can get legal aid to sue them then you might as well try, otherwise it could possibly bankrupt you. I found it a good way to dorect the anger I felt. We got a sort of recognition that it was down to them, but were told my daughter was not affected enough to warrant action. Damned cheek but at least we got it in writing.

lou sorry to hear about all the problems you had when dd1 was born but glad to know shes doing alright now. Is EDS treatable or does it just get better with time? I wonder whether dds break was to do with over extending? I feel awful but she got the break from trapping her foot under the pushchair, it was a tandem and when crossed we the road her foot went right underneath but very unusually so and I never thought before that this could be to do with the hyper mobility.

As for the birth issue I dont know whether I can be bothered at the moment in pursueing it any further. dd has alot of problems but I do feel things could have been alot worse given the circumstances surrounding the birth, so I suppose in a way I feel lucky to have her at all. Saying that though it really gets my goat when taking her to all these specialist appointments and I feel like its my fault when deep down I am sure it is the birth. Even on her statement which I got through the other day it notes that she had cerebal oadema(sp?) at birth, so are they admitting this is at the route of her problems? Dont think you ever get answers off these hospitals just always made to feel as though its your own fault- wouldnt mind so much if they provided services for her without me having to moan, whinge and nag.

Sorry I really do sound like a miserable devil dont I!

No not at all, I know what you mean. I think what made me have a go was thier denials that it was anything to do with them like you said, and then every doctor I met flet obliged to tell me that it wasn't the valproate which caused her problems. It just made me mad and determined, plus I needed to get cross with soemone at the time.

EDS is not treatable, just liveable with. You learn to cope and know your limitations. Dd is not allowed to do high impact repetitive exercise such as cross country (there has to be some advantages I spose!), trampolining and oddly hockey, because of the risk of damage to her ankles from a stick.

If you want to look, the website for the uk support group is here .

Dd broke her wrist at school, fell over and overextended it . Actually I had big arguments about it, she was only 5, they knew her history and when she fell over noone could be bothered to look at her. She was telling me for 2 days it was hurting, until I went to swing her when we were playing and she just howled. Took her to casualty to find it broken. The headteacher was a real battleaxe and thought it entirely feasible that she aged 5 and in loads of pain should walk around trying to find a teacher who could get off their backside to take her to the nurse. Dd was scared to knock on the staffroom door so she didn't, and the dinner lady wouldn't do it for her, so she suffered for 2 days, because as I didn't get a note about her accident I thought it was not as serious as she had been saying (to my shame). I was furious. Wasn't the last time we crossed antlers with the head either.

thanks for the link lou I have a quick flick through but will have a better read tommorrow. Just noticed a few points though that dd has hypotonia too although this is improving, her feet and hands are as flexible as those shown in the pictures and she has a raised bump and scar on her head from a fall she had 18months ago-I thought it was my imagination but reading this link I dont know now. Also from a very small baby she has dislocated her jaw, although I can do this too and I have very weak knees and ankles.

dds problems are mainly gross motor, her fine motor is less of a concern. But gross motor problems are the worst arent they as they just seem to hinder all other aspects development.

Isnt your dd lucky that she gets out of cross country which I could have used that excuse at school! And how could her school be so hard faced about her accident its disgusting that we have to trust people like this with our children.

Your daughter sounds the same as mine Fio. It was her neurologist who first suggested it, from a scar that was really red and raised over a year after, and the fact she was very "clicky" when you held her hand. It's come down through me, I have had problems with my knees since a young teen, dislocated it many times, then finally had an op but it has left me with restricted movement in it. I also suffer pains in both knees, they are quite weak, and now over the last few years my wrist, since I damaged it opening a tub of fresh pasta sauce of all things, about 4 years ago(those plastic ones you lift the lid off) . I have virtually no strength in it at all.

I wouldn't say you were mad to be thinking along the lines you are. Obviously there could be many other things instead of eds, or nothing at all, but I can understand why you think it could be something like that, especially if you have similar symptoms.

my knees are terrible lou click all the time and the one in particular is quite painful at times and my ankles go over and twist for no reason usually when I am going up and down steps, also I had to have insoles in my shoes as I was very flat footed. My dad was late to walk as a child, is flat footed, very flexible, round shoulders etc so maybe it is something like eds.

I am very niave at times but I never put my knee/ankle problems in connection with dds I am starting to think maybe it is all connected. The paed did say in the family but they fob you off with so much stuff you start to take no notice dont you?

lou did your dd have delayed development as a result? My dd is SEN but her recent reports seem to point that other aspects of her development are being delayed due to these mobility problems. Luckily she is at a very good SN nursery at the moment (full time 9-3 every day) they know how to press all the right buttons, you can tell -she is turning into a very independant little girl already. Trouble is were moving soon dh started a new job monday in Greater London/Kent so as were going to have to move down there dont know whats going to happen on the schooling front.

Fio, another clue that might point you along this road would be very fast labours, possibly coming early too. DD has feet as flat as ironing boards, but mine seem ok. She did have dev delay , but I can't say for sure it was to do with the EDS because she had other problems too, but it was gross motor which she was behind in. She didn't sit til 9 months, crawled at 15 months, then walked just after her 2nd birthday. Inbetween crawling and walking she used to do this funny high kneeling shuffle, walking on her kneecaps. Dd2 used to do this as well.

We were seen by a couple of doctors origianlly, but the best one I have seen for my kids was Dr Mike Pope. He is sort of a travelling doctor, as he is the number 1 bod in EDS, so he moves around the country every few years. I think he is cuurently at the Chelsea and Westminster. The EDS group will be able to tell you. He is a geneticist and a dermatologist, and very helpful, full of information. If you can't get to see him then it might be worth asking your gp to refer you to someone who specialises in the symptoms you describe. Or call the paed you are under and ask them if they think dd has an inherited collagen deficiency syndrome, and if not why not? We had to do that with ds2 and his cerebral palsy. Some docs just won't give anything out to you unless you really push.

lou my dd didnt sit till 9 months, crawled at 16 months and walked at 22-23 months, also she used to bunny hopping so they sound very similar on that front. I will asked the paed the next time I see him- I may also ask about cp(again!). dd has had 3 brain scans since birth but if its milder cp sometimes it doesnt show up does it? As for the birth I went 2 weeks over and had to induced- it was a slow starter but quick when I started dilating but then she decided to get stuck in the birth canal and unfortunatley there was no budging her-so off to theatre it was. They couldnt find her heartbeat before I went in, but she cried on being born. She had to go to SCBU as she had a 'dusky' episode after birth-this is why I am always thinking poss cp.

srry lou I really am going on but thought I had better explain my thinking.

You are not going on at all please don't think that! We do seem to have similar sounding children.

As for CP, you probably know that ds2 has this (moderate/severe spastic diplegia), so I might be able to help there too. It does not necessarily mean that your dd does not have cp because the scan was clear. A child can be severely brain damaged and have nothing show up on the scan, and similarly a child who shows major brain damage can have very few symptoms. Of course I am not saying your daughter has cp or eds, just saying this scan is not definitive. My son has signs of minor damage around his ventricles (PVL) but is quite badly affected.

If you want to contact me via email contact mumsnet and I would be more than happy to talk to you.

thanks lou for all the info, I didnt realise your ds had cp although I should have done cos I was just reading another thread and you mentioned it on there. The pead has hinted at mild cp a few times but I dont know if she had a diagnosis of cp at this stage it would make any difference to us as the help she is getting at the moment would be the same. dd has a noticable left side weakness and also a squint in her left eye, but I shouldnt be so down on her as she making steady progress and is a lovely natured child-unlike ds who is a little devil most the time. How old is your ds2, is he getting conductive education? dd gets this at her SN nursery, its very good isnt it?Things have really moved on for people with cp havent they. My parents friends son has severve spastic diplegia-caused neglect at the birth,he is 20 now and with support is completing a degree course.

Anyway thanks again lou I bet 2under2 thinks we have gone off at a tangent on this posting!

cough sorry to intrude - just wanted to say thanks for the opinions on Piedros - I think we'll continue to use them occasionally and just play it by ear. Might have to lie to Portage worker about how much dd wears them.

Sorry 2 under2, I'll start a new thread for Fio! A bit of a fib never hurt anyone I think.

sorry 2under2 but I think you are right about the piedros in your dds case. What the physio doesnt know wont hurt her!

my ds also has cp (left hemiplegia) he hated the boots and made no effort with them at all. I'm lucky though, he is walking now (nearly 3) with very little aid from me at times. He can't stand up himself and can't do stairs but apart from that he copes well now.

sounds like hes doing really well MABS

sorry to reactivate this thread but couldnt justify making a new one, anyway my dd has 'mauve' piedro stability boots and they are taking a bit of punishment. I cant find any 'mauve' shoe polish anywhere and wondered if any of you ladies would have any idea if I could get some mail order. I have tried contacting the manufaturers/suppliers of piedros but they only do neutral polish which wont cover up all the scuffs.TIA

Felt tip Fio?

are you being cheeky

doesnt clarks do pretty girl colour polish?

have tried there but its only when they've got mauve shoes for sale