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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

TALIPES/CLUBFOOT and moving to the UK

20 replies

eefje · 18/11/2007 18:48

Hello,

I have a son who is 12 months old and was born with talipes (left foot). He had a cast for 7 months and had an operation when he was 4 1/2 months. Now he has a boot he has to wear during the nights only, to keep his foot in the right position.

We live in the Netherlands and are moving to Newcastle upon Tyne end of december. I have some questions, I hope somebody can answer for me...

Does anybody know a good doctor specialized in talipes in the northeast?

In Holland the boot (or whatever its called in english) is financially covered by our health insurance (I believe 1 in every 9 months). I know in England there's the National Health, but have no idea how this works... Will it cover costs for treatment? Will I need extra health insurance? Do we pay for the medial devices ourselves??

Hope someone can answer my questions!

Eva

OP posts:

babalon · 18/11/2007 21:01

Please check out www.steps-charity.co.uk.

My ds2 (15 months) was born with bilateral talipes and this charity has been a life line for me. I know there are some great hospitals in the north with talipes specialists. It'll just be a case of getting a continuation of your ds's current treatment the ponseti method of treatment is favoured in the uk.

How you get things sorted

babalon · 18/11/2007 21:03

Sorry 'HOPE'
Oh and mostly the braces or boots are funded by the nhs.

Original poster

eefje · 19/11/2007 20:16

That's a great site, thank you!!!

OP posts:

babalon · 19/11/2007 20:57

Glad you found it! I just replied to your message under health about the helpline that they offer.

I hope to speak to you on STEPS soon, good luck with the move

Dinosaur · 22/11/2007 16:41

I am sorry not to have seen this before. My DS2, now aged 6, was treated by the very wonderful Mr de Kiewiet at Sunderland Royal, which is very close to Newcastle upon Tyne. I thoroughly recommend him.

Original poster

eefje · 25/11/2007 16:34

Thanks Dinosaur! I've heard this name a couple of times now. I've had contact with steps-charity and they also advised me this dr. De Kiewiet. I will try to get an appointment with him for sure, as soon as we arrive in the UK.

OP posts:

Dinosaur · 25/11/2007 16:41

I see you did find my post! Good luck with everything; Mr de Kiewiet (or Mr Ticket as he used to be known by DS2 before he could pronounce the name properly) is lovely and really knows his stuff.

We have what will hopefully be our last visit of all to see him in Spring 2008 (we live in London).

Graciefer · 25/11/2007 17:00

Welcome to mumsnet eefje, it truely is a wonderful place.

I have also heard very good stuff about Mr de Kiewiet.

My DS1 had his tenotomy operation last week, so we have 2 more weeks (from tomorrow) of casts and then hit the boots and bars stage.

Can't wait, is going to feel so strange holding him/feeding him etc without any bulky casts on his legs and DH can't wait to take him swimming for the first time

Graciefer · 25/11/2007 17:01

Thats DS2 not DS1, I must remember to preview my posts, heheh.

Original poster

eefje · 26/11/2007 19:09

Graciefer - Has he had casts from birth on? It's wonderful once they're gone!! But be prepared! My husband and I were really looking forward to the first time without a cast. But what happened was our son got a bit upset he no longer had a cast around his leg! This was probably a funny empty feeling and he didn't know if he was happy with that unfamiliar situation! So we were all excited and he was upset and crying for a day or two... After that first two days it quickly got better!

Good luck!

OP posts:

Blu · 27/11/2007 10:22

yes - i think that is a common experience, eefje. My nephew had a pavlik harness on for the first 3 or 6 months 9i forget) and was most disturbed when it came off. He lept waking huimslef up by waving his legs and kicking himself, because he wasn't used to being able to use his legs freely.

My DS had a thigh length cast on his leg fro 3 months either side of his first b'day. the cast didn't deter him one bit, but when it came off he was very anxious - didn't want to put his leg on the floor to crawl, etc etc, and it threw him a bit.

But they recover quickly.

Graciefer · 06/12/2007 12:54

4 more days until he has his casts off for the final time and boots and bars fitted

He is going to miss them for sure as he bangs any hard object he can find with them as he loves the loud bangs and crashes it makes, heheh.

Can't wait to be able to bath him whenever I want and be able to swim etc, weeeeeeeeeeeeeee.

Dinosaur · 06/12/2007 12:55

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

Graciefer · 06/12/2007 13:00

Yes it has flown by, I can't believe he is 3 months old already.

It is going to so strange giving him a cuddle with no casts on and him feeling so much lighter etc.

The hospital did make me this week though, as we normally take his casts off at home on a Sunday night ready for new ones to be fitted on a Monday morning.

They phoned this week and said they would prefer the casts to come off in the morning to make sure we keep all the movement we have gained, they suggested we give his legs a good soaking and then wrap him in carry bags and travel to hospital where they would remove them.

Of course I said no way and that they could do the whole process at hospital or we would do it all at home (which we finally agreed on).

I have never heard anything like it though, soaking 3 month old babies in water and wrapping them in carry bags before taking them on a 15 minute journey indeed!!

Dinosaur · 06/12/2007 14:20

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

breadandroses · 06/12/2007 21:16

We were asked to do this at Chelsea and Westminster! Soak it in flannels and place in a plastic bag! I politely declined, perhaps if the combination of twins and London transport wasn't hellish enough I would have done it. Only takes a few minutes in hospital though. Glad you're getting the help he needs Eefje.

breadandroses · 06/12/2007 21:17

Dino how is ds's foot?

Dinosaur · 07/12/2007 11:58

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

Graciefer · 11/12/2007 12:06

DS2 had the casts removed for the final time (hopefully!) yesterday and they were very pleased with the results.

Had the boots and bars fitted, been a bit of a nightmare so far. He hardly fits in his car seat/infant carrier with them on, cried all night as he doesn't like not being able to move his legs independantly of each other and hardly fits in his moses basket with the boots and bars, which made him uncomfortable and worse during the night.

Have got his cot put up today (long story involving us still sleeping in the dining room as bedroom is being decorated still) so hopefully that will help with his sleeping.

My main concern is that hospital didn't really show us very throughly how to fit his boots and he has managed to slip out of them 4 times so far.

I am putting him in thin socks with rubber bits on the bottom, but I am a bit confused on how far down his foot should be in them. He has Mitchell suede type sandels (Ponseti AFO I think they are also called), at the back and bottom of them are 2 holes, I am unsure whether we should see the heel touching the bottom through them or if we should see daylight?

I have phoned the psyhio for some advice, but haven't been able to get hold of her/have my call returned yet.

Does anyone know how far down his heel should be in the boot and have any advice how I can stop him slipping out of them?

Thanks so much for any advice you may be able to give me in advance.

babalon · 11/12/2007 20:03

Hi Graciefer,
With the Mitchells it can take a little while to bring the heel down and this goes for each new pair of boots. Just keep aiming for the next hole up on the straps especially that middle one. I always use socks (cotton gap ones with the grip on the bottom) They do have to be tight and there is definately a knack to it.
Anymore advice needed please post on steps forum I hang out there more than here

Good luck with it he will settle, I put DS2 in his cot about a week before the boots went on because of the space issue have you tried him in a grobag that can help the babies not to wake themselves up so much. The Mitchells are definately the best brace (I've had both) so you're already half way there

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