Hypermobility

[Amanda104]

Hi, I am at the end of my tether and need some advice as to where to go next.

My son can crawl and will cruise round the furniture and has just started to "walk" robot like holding both my hands, but his feet are almost at 45 degrees and his ankles are right over.

My son is now 21 months old and a month ago he was diagnosed with hypermobility and excessive aversion of the ankle joints by a piediatric consultant (I had to push and push and push for this appointment, cos I new something was wrong). He referred him for physiotherapy which we have had the first appointment today she said to tickle the inside of his foot to get him to move his foot inwards and that was it!!!!!!! Said she wanted to see him again in 2 months, and nobody would do anything else until he was 2 years old. I thought she would give him some specail boots or something.

I am angry and very, very, very frustrated. What do we do now??? He is getting heavy and one way or another I have been carrying him for over 2 1/2 years!!!

We are thinking of going to a private peidiatrician but dont know where to start with that, I just want to help him

Has anyone got any ideas or suggestions.

Amanda, My friend's son has exactly the same thing and she has been told he needs surgery.
Not sure how that info helps you, but thought I should pass it on.

My dd2 has hypermobility (she also has severe learning disabilities), which has prevented her from walking until age 7. We had some Piedro boots initially, but these weren't good enough. Finally last summer, she got some DAFOs - very stiff ankle supports (also called splints) which are made from a mould shaped to the child's foot. Since then, she has progressed hugely and is now nearly walking independently!

It may be their policy not to do anything till age 2 - I've heard this before with regard to walking delays. It sounds like your ds is doing well despite his ankles.
It might be worth consulting a private physio - ime different physios often have quite different views on things.

Hi, I am getting frustrated by the "system" and from being passed from pillar to post and the left hand not knowing what the right hand is doing.

We live in a small town and went to see the physio in the next big town. I have just had a phone call from the physio we saw this morning and now we are being passed to our local community peidiatric physiotherapist. So we have to go through the whole thing again. AURGGGHHHHH . Its all red tape and so slow!!!

My DD is now 5 and is Hypermobile in all her joints, and has a Femoral Excessive Anteversion on one leg.
Peadiatric ortho have her on 2 yearly recall and have not done anything. I have just been back to GP and said her walking is becoming more difficult, and am waiting on them hurrying up a new appointment.
They told me they would do nothing til she is a lot older as the Hypermobility in itself is not an issue, more the anteversion, which will require an op when she is older.
I am going to push for for physio for her, but I know waiting lists are awful round here.
If I was you I would go back to GP and see if you can get a second opinion. That is going to be my next step.

My daughter has just turned 3 and was diagonised with hypermobility when she was under 6 months. I both her some leather Primigi ankle boots around 18 months and she managed to take her first step in the shoe shop, I nearly cried with relief. Prior to this I had just bought Clarks. At 23 months she was still not walking independently however at 24 months she started walking on her own. I have kept buying the ankle boots even through the Summer. I tried to put her in little fashion pumps but her ankles just go back in again. I also did the foot tickling exercises daily from 6 weeks and it did help. I still have concerns for my daughter as she really suffers with the cold compared to by son and cannot hop or skip. Push your Doctor for a referral again at 2 if you are not satisfied with the current advice.

My DD has the same as your son.

She WAS given Piedro boots though, to help with her walking and support her ankles. You could ask about those at her next appointment, or orthotic insoles.

My DD didn't walk at all until 23 months, so your son sounds more advanced, though.

She also just had physio appointments every 2 months, I think they just wanted to check she WAS progressing and didn't have any signs of any other problems, such as weakness in one leg etc.

Anyway, her ankles improved very very rapidly once she started walking and she has now been discharged from physio and just wears normal shoes. She only had two pairs of special boots, then some insoles and now her ankles are pretty normal.

The physio didn't really give her any treatment, they just improved enormously on their own as she got stronger with walking.

She started walking just as she turned two and is now catching up quickly, and going to normal playgroup.

I hope this gives you some hope for your son too.

I second the idea of buying supportive boots yourself, although you may have to argue with the shop assistant as they often won't sell walking shoes to pre walkers.

The best boots we found for my DD were Superfit ankle boots, they seemed even better for her than the Piedros.

Thanks for the feedback girls.

Has anyone got a brick wall I can bang my head against {wink]

I think I need to calm down a bit and go and throttle someone very quietly.

They make me feel like I am being a really "pushy" "interfering" mother when all I want is the best for him and to help him.

I have been told that he shouldnt have shoes until he is walking - but its like chicken and the egg - he cant walk properly without some ankle support - but cant have shoes until he can walk!!!

Do you think I should get him some shoes/boots of my own bat and see what happens. Will they do him any damage?

Where do I buy these boots from? What is the difference between all these different types of boots and can I just get them "off the shelf"?

Sorry for all the questions

Who told you this about the shoes? Was it the physio? If not, can you call and ask them their advice on shoes? We just got them from a small local independent shoe shop.

Just read about the boots on here.

I asked the physio this morning about shoes, she said that it was up to us and didnt give any advice at all.

I don't think it would hurt. We could see an improvement in my DDs walking in the shop!! I would take him, explain the situation and try a few pairs of lightweight but supportive boots and see how he looks in the shop. I emailed the shop first to explain the situation as I had been warned that they might refuse to sell them.

My dd is 15 months and was diagnosed with hypermobility and low muscle tone at 12 months.

She only bore weight at 12 months and has just started to pull up. She has Piedro Boots on loan from Physio and is seeing Orthotics at the end of this month to get her own fitted. We are in London and noone has mentioned waiting until they are 2 yrs old here.

I did have to push for a referral and really flag up that she wasnt even putting her feet on the floor when her friends younger than her were walking. To be fair though, we've moved pretty quickly through the system considering how dire it can be. A friend in Leics has been waiting forever for a physio appt for her dd.

She hates her boots though and Ive only ever managed to keep her in them for 30 mins with constant play/encouragement (they are heavy and cumbersome to a bum shuffling baby who has never worn shoes). So Im hoping as she stands more she'll get on better with them.

Our Physio suggested getting some childrens boots by a European brand as oppose to a UK one as they have instep support in them as an alternative to Piedros - but she screamed blue murder at those as well - might be worth trying for your lo though?

sorry for the essay!

My son (now nearly 5) is also extremely hypermobile. His physio initially didn't want to put him into piedro boots - the thinking is that because they support the ankles so well, they delay the ankles strengthening up and being able to support themselves. However, she did eventually decide that getting him piedros at about the stage your son is at (ie capable of weight bearing, pulling to stand with alarmingly outturned feet and very stiff Charlie Chaplinesque walking while holding on to something) would be a good idea and help speed up the process of him getting independent. They helped colossally and he was walking (albeit very falteringly) by 23 months. He then continued to wear piedros for a while, although went about barefoot indoors most of the time once he could walk, to strengthen his ankles. He is now in "normal" shoes, although I did find, despite persevering for 18 months, that Clarks shoes didn't really support him enough, resulting in his legs and feet tiring out quite quickly - he still has very pronating ankles and totally flat feet. However, someone on Mumsnet recommended Ricosta shoes as being extremely supportive and well made. So now he is in a pair of Ricosta ankle-boot/high shoes and can walk, run, jump and hop in them and is much happier. They are rather expensive compared to Clarks (and Piedros are free on the NHS...), but well worth the money for the extra mileage they give him. I'm not sure whether they make these shoes for very small feet, though???

Thanks for all the replies girls.

Can I just ask about these Piedro boots, do they have to be "fitted" by someone specailly trained?

And where do I go?

I had severe progressive bilateral Femoral Anteversion as a child (could not walk without tripping over by age 7), and went through years of shoe inserts & built up shoes which only gave me blisters!

They probably are right to wait until 2 as many people DO improve as they grow.

You did right to push for a referral, but you are in the system now so I would take their advice. If he deteriorates the Physios will see it and get you straight back to the consultant.

We got our piedros through the physiotherapist and they were free on the NHS. I think they are extremely expensive to buy privately and should not be bought without someone qualified measuring your child's feet accurately, first, as they are, despite their rather attractive appearance, orthopaedic boots, so you need the right size and the right type. However, I suspect if you look up piedro boots on the internet, you will find a/the supplier.

So, in other words, go back to your physiotherapist and try to persuade her that piedros would be a good idea.

Milliways, did you need an op to correct your Femoral Anteversion? They say DD might when she is about 10, although they say it may be for "cosmetic" purposes.

Dd is 12 and also extremely hypermobile. She has spent parts of her life in a wheelchair, as she hasn't always been able to walk. Not really anybody's fault, I think; just that in her case there is no treatment that will cure her, though physio and occupational therapy have gone a long way. She just has to accept that she can't always walk.

But that is not the same as to say that there is no cure for your ds. There may well be.

You could start by pushing a bit for piedros. If it turns out that they are not a good idea yet, then I would concentrate on making life as easy as possible for yourself. Use a buggy rather than carry him. Let him find his own ways of crawling around the house. Don't do what I did and wreck your back by carrying a big heavy child.

MankyScotLass: Yes I did, and it was a major event for me. I was 7 and had both femurs broken, twisted & plated in place then a full length hip spika frame fitted (plaster cast from arpits to toes with a metal bar bracing the knees). Apparently these days (I am now 42) they can use a smaller cast!

Mine was progressive though (very rare), started as pigeon toed at 2, knock-kneed at 5 and tripping over by 7. If not corrected feet would end up almost backwards and I was threatened with "wheelchair for life" by age 10, so no choice really!

Oh, and this is NOT to frighten the OP. I was NOT hypermobile and 90%+ of kids grow out of in-toeing!

Thanks Milliways....it's just DD's anteversion seems to have got markedly worse and I tihnk surgery may be inevitable for her.
If I am not being too nose (you can tell me to get lost), how is your walking now?
I just worry about her being a teenager, knowing what other teenage girls can be like with comments and appearances.
thanks

And sorry for the hijack OP.

My walking is fine. I had some problems at age 16 and they removed the metalwork (which I think is routine now after a healing period).

Only problem I do get is purely muscular.I had 7 years of growth with legs in wrong position. Legs rotated but muscles became twisted/stretched/out of perfect positioning due to this which only really showed up when I was fully grown. I am not sure how much is due to the Ops (I have had 4 in total - plates in, plates out, moving muscles & bone trimming) or just me, or just geting to that age when we are prone to stiffness, muscle problems etc.

On good days (most days) no-one would ever know anything had ever been wrong. My ankles still drop inward but that is cosmetic and only wears shoes down a little! On cold, damp, wrong time of the month days I can seize up - but that has only been in last few years. In my twenties I would have "limping, stiff" days, but anti-inflammatories & excercises help & these days pass.

Remember - I was extreme. If your daughter is cosmetic then the rotation won't be too bad and surgery techniques have improved vastly in the last 35 years.