Hypermobility....new diagnosis

[slightlymad]

Hi I'm new to these boards and have just spent the past 4 hours reading through loads of your posts!
My son has been diagnosed recently with hypermobility. He has this along with many other health problems including heart defects, immunodeficiency, verbal dyspraxia etc etc!
Anyway - I'm really looking for information and support with the hypermobility. He has lots of pain in his legs and feet and yesterday was fitted for Piedro boots. I believe he will get these in about 3 weeks. I was really quite amazed and taken aback when they said he needed these boots - and am still not 100% sure what they will actually do for him??? As far as I am aware they are 'just' Piedro boots, as in, no special inserts - although I have phoned today about this because I was really not sure what to ask yesterday!
I was told he is completely flat footed and that his ankles roll over very far. They said this in turn affects his knees - and then his hips (He has a pelvic tilt as well) and that this then affects his spine. Will these boots really help to correct ALL of this?
When he walks he has 'floppy' feet and he frequently trips over his feet as they catch on the floor. He gets pain in his feet and needs carrying a lot.
He already has a major buggy due to his other problems so that helps out greatly!
Looking forward to hearing about any experiences any of you have with this!

I could ramble on about hypermobility ad infinitum! I have ehlers-danlso syndrome, and my oldest three have too, and this causes hypermobile joints. Dd1 has suffered most out of my children. She is 12 and already had a partial dislocation of her knee, which is ealier than my dislocations started. She has feet as flat as ironing boards too, and they roll. When she was smaller she had piedro boots and they did help her. The reasoning behind them, is that if the foot position is right, it will bring the rest of the body into alignment correctly, and therefore put less stress on the joints, which can help improve the instability, and muscle tone.If one part is out of whack the rest will follow, as the body has to compensate . Hopefully you will find a difference with regular wearing of the boots. When he is too old for those, there are various inserts that can be moulded to fit , which is what dd1 has now. The inside of a piedro boot is specially built up on the arch anyway, so in all probability your ds won't need any extras. They are quite heavy boots though, and will take some getting used to. He may ache a bit because he is going to be using muscles that he hasn't had to before. Good luck. Let me know if I can help any more.

Fio2 is a bit of a whizz about hypermobility , so she may have more to add.

Dont know that I am a whizz lou!

My daughter has hypermobility, amongst other things too! She has the piedro boots but also has a heel cup. The heel cup is a plastic insert that keeps the foot and ankle in the correct position. To make the heel cup they have to make a cast of the foot and then make the plastic bit in a factory (this is unimportant info I know!)

What they usually do, in my experience anyway, is start the child off in piedro boots with the valgus insert, which is raised on the arch, to see if this does the trick. These inserts come as standard. If after a month or so with this insert it is not helping they look at other options. In our case it was heel cups. With more severly affected children that may mean some kind of splint.

The reason they like the child to wear the boots is for stability of the foot and ankle and also as Lou says, for the proper alignment of the whole body. The other reason is that when all your joints are moving in different directions a small child has to think about the whole of the control of his or her moving body before thinking about anything else. Therefore this can affect the learning (this is what I have been told anyway) So if the feet are stopped from moving and walking is easier then the child will worry less about their feet and more about other processes of thought.

I love the piedros and inserts, they have really helped my daughter and she wouldnt be without them. On a practical note though they do rub at first and can cause blistering of the feet. They are stiff hard boots (and are suppossed to be) and are bound to rub at first, so generally you only start the child off in them for shorter periods and extend it over a period of time. HTH

Thanks for your advice - this has really helped me!!!
The inserts that come as standard....can you put them into other shoes for times when they aren't wearing the boots, or will they only fit the Piedros?? (Or maybe i'm totally wrong and they don't even come out at all???? - can you tell i'm new to this?? LOL)
I suppose a few good pairs of thick heavy socks, like hiking socks, would be a good investment for the early days?

The inserts are built in, but as he gets older you will be able to have his feet cast so they can make moulded removable inserts to put in other shoes, like my dd1 has.

no we could take the valgus inserts out and put them in other shoes Lou, maybe they were different ones? They prefer you to have boots to begin with because they support the ankle and stop them moving around so much. They can advise you on buying other boots if you so wish. Ask the orthotist (shoe man) when you see him. They told us look for a stiff boots with a hard sole and a hard back round by the heel. Elefanten and most french boots are okay, just ask the orthotist will tell you

Slightlymad - Hello! My DS wears Piedros, and we have got on really well with them. Also, they are quite cute - the Piedro Boots thread has links which show you what they look like, and one explains the construction which is what makes them so helpful. I don't think you will be able to put the inserts in other shoes, it's the sturdy structure of the boot itself which is effective.
How old is your DS? We haven't found Piedro boots to be much heavier or stiffer than tough leather boys shoes, and have never had problems with blisters - just used cotton socks.
The logic sounds good to me - and I hope these boots really will help your little boy.
And I suspect that for them to be effective, he will need to wear them all the time, rather than the range of cute summer sandals and trainers you have lovingly stocked up on!

X POsting with Lou and Fio: I retire enlightened!

My ds is 4 years old.
I HAVE been advised that he should wear the Piedros ALL the time...but I was asking if the inserts could be removed because the orthotist said we could leave the boots at home when we go on holiday for 5 days in the Summer!!
But - I think i'll take them with us and use them in the evenings and stuff.
You are right about the other shoes though!!!!...I have just bought a lovely pair of 'trecker' sandals, some trainers and some 'doodles' canvas shoes from Clarks!! - Unfortunately ALL have been worn otherwise I'd have been returning them! Hahahaha!!

Hi there

I hope nobody minds my butting in. Sorry if you do. My ds is now 8. He has high functioning autism. We were told that he had hyper extensive joints and low muscle tone as a toddler. He didn't walk until he was 22 months and that was after he started to see physio and she told me to buy really tough ankle boots for him to support his ankles. For years he used to wake up at night in tears because of pains in his legs. It is not too bad now, but if he has a particularly active day he will still wake up with sore legs.

He was referred to a specialist years ago, who told us that the pains at night were probably attention seeking. We didn't really believe him but thought he probably knew what he was talking about. He did also advise that he should not be encouraged to play contact sports in the (then) future. Thankfully that has never been an issue as he hates body contact anyway!

Sorry for wittering on. Just wondered if this could be hypermobility? Will the pains diminish? Is there anything to watch out for in the future? Would appreciate any information.

Rebi, I have no idea whether this could be hypermobility, but it does sound as if he needs help to get it sorted out, whatever it is, and i would agree with you that he really is in pain / suffering soreness. Does he still see a physio? If not, can he be referred again, and ask her to refer you to an orthotist?

Just popped on quickly to say, Fio they may have changed since dd1 had them, she is 12 now, so it would be 10 years ogo. Hers were not removable though.

Rebi, I will come back when I have more time to talk to you, but dd1 had the same problems with pain .

Rebi, Dd1 was exactly the same with regards to leg pain, and in fact still gets it on and off.

With hypermobility, the joints over extend, as there is a laxness in muscle tone. A typical "normal" muscle would hold the joint in place and only allow it to move a certain amount, but with hypermobility the joints are not as stable, as the muscle allows more movement. This in turn causes muscle pain due to overexertion. It is very possible that this is the cause of the pain you describe, esp if there has been an active day as you say. We found massage of the legs, followed by raising them on pillows to sleep with, and some pain relief.

Dd1 has been told to avoid high impact sports, like trampolining, cross country, and hockey ( due to risks of being hit by sticks), to lessen the chance of increased pain in the night. It is NOT attention seeking, it is real. Hth.

Eeek, Lou: DS has a hypermobile knee (as a side effect of having no fibula) but his physio has encouraged trampolining (to the extent that 'Dad to purchase trampoline' was one of the recommendations written on his last assessment report!) in order to build up his calf muscles. He has never complained of pain - but he is not yet 3. Perhaps i should ask about this when we next see the physio.

Well it does seem odd to me Blu. I am not sposed to do it either and I have terrible trouble with them. Haven't had one physio who has recommended it tbh. In fact we gave our trampoline away on teir advice!

Aaaargh! And assembling the damn thing took years off my life! I'm going to call the physio and not wait for our next review. thanks for the tip, Lou.

You physio will hate me now. Of course it could be for different reasons Blu.

I'm very interested in the trampoline thing!!
We have a huge one in our garden for DS. The speech therapsist recommended it originally for his motor development. I had no idea it could have a negative impact on the hypermobility. He loves being on it - gives him some kinda 'release'. I suppose it will be putting loads of pressure on his hypermobile feet/ankles/knees??? Something i'll ask about next time we are at the hospital!

I have never heard about the trampoline thing, wont matter now because someone knicked ours the other day bloody b@st@rds! I am afraid Fio2 went on the rampage looking for it yesterday and god help the person responsible if I had have found it, LOL

I cant do high impact sport either, sure I have hypermobilty too, ankles and knees move all over the place and dislocate very easily. Aerobics is a killer and usually ends up with me being unable to walk for a few days! Also I dont whether lou has mentioned this but the over extension of the joints can cause breaks which unfortunately we found out with our daughter when she broke her leg.

Also my daughter wakes up in the night with twitchy legs, I always thought they were spasms but I suppose they could pain through her hypermobility. I didnt realise it was painful..doh!

Thank you. I really appreciate your comments. Lou, you describe my ds perfectly! They just gave us a different name for it. We always knew that it wasn't attention seeking, but when a professional, who hears all the symptoms tells you as such, you just imagine that he is a one-off and its not the norm iykwim. It is helpful to know that it is part and parcel of hypermobility (which I will now call it rather than hyperextensive joints with low muscle tone!). Really helpful - thank you everyone.

Rebi they just dont explain things to us properly do they? My daughter has low muscle tone but it was Lou who told me that the hypermobility causes the low muscle tone and vice versa...the womans a genius

Hardly Fio!

Inyerestingly, ds2 who has cp and has very stiff but weak legs, is also forbidden from trampolining by physio (not that he can stand, but we are not allowed to hold him upright on one for him to bounce). Maybe they just all have a trampoline hatred .

funnily enough I was told by OT to get him a trampoline to build up his muscles!! Never got him one though, as with his coordination I thought he would just fall off the small ones and I didn't have the room at the time for a big one. Quite glad I didn't now reading this!

We did start him swimming twice weekly about 3 years ago. He gets individual tuition (he couldn't cope with noise and splashing and also couldn't understand instructions in a group) and we have really really noticed a difference in the last year in his muscle tone. I would highly recommend it.

Just thought i'd add - My DS had a review with Child Development today and whilst we were discussing his hypermobility and Piedro boots etc,etc, I asked about the trampoline thing. The Community Paediatrician said no, they aren't really recommended for anyone with hypermobility...BUT....I use ours to help with DS's behaiviour issues - if he flies off on one or is a bit hyper - he's shoved out into the garden for a good bounce!! The Paed said it was a case of weighing up the benefits against the downfalls and that as long as I know what to watch out for (as in - injury stmptoms) - then to go ahead!! So - what do I believe?? They shouldn't be used, or can be used with caution??!!!

Hi slightly mad. I have hypermobility, flat feet rolling ankles etc and therefore have suffered with back and neck pain and headaches/migraines. I got headaches from jumping on trampolines when I was a kid and so avoided them after I made the connection. I guess your DS would tell you if he suffered after a bit of bouncing though.

Do you guys think it is strange that I have these things and no other diagnosed problems? I am getting a bit paranoid. I am also starting to worry about what I should look out for in my DS if he has picked up this stuff from me. So far all I can tell is he has definitely got his dad's feet not mine - hopefully that is a good thing (besides the ingrown toenails and difficulty getting wide enough shoes).

I'm reading this with a great deal of interest and hope my post doesn't seem trivial compared to what teh rest of you have to deal with. When my daughter was born I was told she had 'floppy' wrists and ankles - had to see a paediatrician when 2 weeks old. I suffered a lot from growing pains as a child and had to had physio on my knee at 16 due to lots of cracking, pain etc - still get very painful knees, esp after walking. Recently I've had tests for what I thought was carpal tunnel syndrome in my wrists - very painful when I'm in the office. But they were negative for that. I realise that I'm (and possibly my daughter) are at the very low end of the syndrome (if that's what we have) but wondered if anyone had a good website to recommend. Only other thing of interest is that I don't have flat feet AT ALL. Completely the opposite, am only really comfortable when I sit with my feet on their toes if that makes sense. Have balletic feet I like to think As does my daughter.