Talipes and Ponseti method - anyone else had or have a child with this?

[snowqueenrollo]

My lovely DS is two weeks old now. The day after he was born his paed check revealed that his bent foot was more than just 'positional' talipes and would need treatment beyond physio to resolve it.
A week ago we saw our lovely Ortho Consultant. DS has been diagnosed with grade 6 talipes of the left foot, and his first cast was put on that day.
We're going back tomorrow morning for removal of cast 1 and placement of cast 2.

I've joined the Steps forum (though I was told I would get good support on there the forum is sow moving)

I'm still getting my head around the long term treatment for this. I'm struggling with the little things like not being able to give my son a bath. We've been told they will have a bath ready for us tomorrow, so we can bathe him when his cast is off. I'm on the verge of tears every time I think about this - that it will be his first bath and it will be in the plaster room of a hospital and not the comfort of my own home.

Has anyone else got any advice or can offer any support?

[greencybermummy]

No experience but just wanted to say try why don't you take some photos in the plaster room as in the future it will be a fascinating talking point for your DS. Tell the nurses and health cares who are around tomorrow that you are anxious, they will want to support you and make it a positive experience I'm sure. Altho it is not the place that you want the first bath to be try and look on it as something unique and special for your DS.

Enjoy your little man and hopefully someone with experience will be along soon.

[FruitSaladIsNotPudding]

My 9wo dd is currently going through this treatment - we had the tenotomy last week on both feet and will be going into boots and bars in two weeks.

It's been a bit of a rollercoaster. We were completely shocked when she was diagnosed at 4wo and like you probably, we were horrified at how long the treatment would go on for - 5 years for the boots and bars! But it's been ok so far. We had one week where she seemed uncomfortable and was grouchy (although could have been growth spurt) but mostly she's not been that bothered.

I was dreading the tendon cutting (don't know if you're having this but i think most do) but it actually wasn't that bad. The incision is tiny, it's all done under local and our dd was back to her normal self the next day.

I know what you mean about the baths though. Dd loves being in the water so i cannot wait to get these casts off.

Where are you being treated? We're at the royal national orthopeadic at Stanmore.

It is hard watching your tiny baby go through this treatment. I feel so protective, i hate people commenting on her casts!

[snowqueenrollo]

greencybermummy
We didn't take photos at the first session because we were feeling utterly floored by it all still. Fortunately my DH is self-employed/working from home so where possible he clears his diary to attend appts. We did take photos today of A's first bath, and I didn't cry because he loved it so much it was impossible not to be happy about it! We have taken photos of his foot and when I can find a few minutes to think straight I'm going to start a blog to chart the journey.

fruitsalad

We're at Lincoln Hospital, everyone at our local hospital seems to know our consultant and the lady who plastered A today said he's well known to the STEPS charity so by accident of where we live we seem to have ended up under a really good Ponseti practitioner.
I've been cheered up today by being told that for future appts it would be better if we take the cast off at home that morning and then we can give him a bath before going to the hospital. I am SO happy about this.

I don't know if he will need the tenotomy, though as you say it does seem to be needed for most cases. A was graded a 6 at his first appt last week, and today has been moved down to a 4.5 - we're really pleased with that!
Today he's come home sporting a purple cast. He's a bit grumpy about having it on as he really likes to wave his legs around. He was kicking and splashing in the bath.
Like you it's the thought of this treatment being so prolongued that I have found hardest to deal with.

[FruitSaladIsNotPudding]

We have to soak the casts at home before the appointment and then they cut them off. Not sure how you would get them off yourself.

I'm glad to hear the treatment is going well. We were surprised how fast it worked - we had 4 cast changes before the op, so it should be 7 weeks total in plaster, including healing from the tenotomy. Which really isn't long although i know it drags.

Anyway, pm me if you want to chat - i don't know anyone else going through this either!

[snowqueenrollo]

A is being placed in soft cast which is really sticky and takes two people but we were shown how to unpick the end and unwind it. I don't know if they will be using that method all the way through the casting stage.

Have you signed up to the STEPS forum? I have, but the talipes section of it seems really quiet at the moment.

[FruitSaladIsNotPudding]

Oh, that sounds interesting. We've just had normal plaster casts.

I have looked at the steps forum, but like you say it's really slow moving. I spoke to someone at the charity though, before choosing a hospital and they were really helpful.

[southernbelle79]

hi there

my little girl had her first.plaster put on Monday. ..would love to know progress on your little ones?

hope treatment has gone and is going well?

[Klari]

Anyone have or had child with boots and brace? I am not sure how tight they should be. My daughter is crying a lot when she has them on. I don't know if something wrong or if she is just uncomfortable. Anyone who had a similar problem?

[PinkSubscriber]

Hi all just wanted to tell you that my ds had the ponsetti treatment 10 years ago.

It’s very successful and once your baby gets to 3 months old if I recall correctly they only wear bar and boots to bed.

Just make sure you’re religious about putting boots on every night.