Talipes - any experience/good news stories?

[LittleMilla]

DS is 10.5 mo. After a failed first referral 4 months ago, I went back to GP today as his right foot is out at a right angle and he drags it and ISN'T improving, despite him trying to walk (I had been told it'd self correct).

Has anyone's DC had this? My GP thinks he'll end up with a cast and/or special shoe to correct it.

I just need some reassurance that it'll be OK and there won't be any lasting 'damage' .

DD1 had this and had physio early on.
I would strong suggets you need a referral to physio team ASAP if not already done it.
DD1 now has a problem with pain and has shoe inserts.

Ah, not what I was hoping for! Can I ask lisa how old your DD was when you started on physio? After I was told by the (private and v.expensive) paed orthopaedic dr that it'd self correct once he started to walk, I left it for a bit but then started on osteopathy as I wasn't convinced.

That was going well until a few weeks ago when DS started trying to walk in earnest and it seemed to get worse overnight, hence going back to (new) GP. She's writing referral letter tonight and we'll be seeing new docs as we've since relocated.

GP seemed to know her stuff this time round and reckons it'll be sorted with shoes or a cast. Did your DD have either, or just physio?

Thanks

My dd was diagnosed with talipes in utero, and at 3 weeks old was put in plastercasts (both legs) and then into the special shoes with a bar. A couple of weeks later the consultant decided to adopt a 'wait and see' policy instead, and it did self-correct. BUT it was explained to me that there are two kinds of talipes - the genetic defect and 'positional' talipes which is where the baby turns her feet in the womb and gets used to holding them there (which implies the foot only needs retraining).

I'm telling you all that because in some cases talipes can self-correct - though I have no idea whether this was likely in your ds's case or whether action should have been taken earlier.

The favoured treatment for talipes is now Ponseti method, which uses casting and then special shoes held together with a bar that forces the feet into correct position. (Not painful but very annoying till you get used to it.) At the point dd was diagnosed (6 years ago) there were only 2 clinics in the UK that were considered really expert in this, but lots more places taking it up. Try to make sure you get referred to a clinic where they are properly trained in Ponseti and not doing Ponseti-lite. (The two expert clinics when I was there were at Chelsea & Westminster and Sunderland, I think.)

Obviously, the sooner you start treatment the better.

There is also a charity called Steps UK which has a really useful forum and information on talipes. I found them so warm and helpful.

Best of luck.

Oh, and you asked for good news: well, I was told when pregnant that dd would never be able to run or dance. She does ballet and gymnastics and is rather good at both

dd was dx at birth so physio was pretty quick. She never crawled and walked very late. We spent years going back to GP about leg pain, and finally referred at 8!
We just had physio,and now under hospital for inserts.
Shes 9 now. She isnt really bad, she is caple of walking ect just tends to get a lot of pain :(

Should also add dd1 does gymnastics and horse riding, so can't be that bad

Thank you for replies, I appreciate it.

DS was undiagnosed breech and GP yesterday has said that his foot is positional, which isn't quite as bad, from what I can tell.

Re: hospitals, I don't know. DS was actually born at Chelsea and Westminster, but we've recently moved to Bristol. My GP yesterday was very positive about the team at the big children's hospital here and kept on stressing that he'd be seeing people that are very experienced etc. So fingers crossed. Devora thank you for the tips - I will certainly check which type of treatment they are offering, and get in touch with the charity.

I am really hoping that we get an appt ASAP as DS is trying to take first steps and cruises very confidently. Poor love is going to be mightily hacked off if/when his foot is put in plaster!

Thanks again for your replies. Didn't make me cry at all, honest .

Bump

Positional definitely better! That's very good news.

He WILL get hacked off with the treatment, but they do get used to it very quickly - honest.

DD (now 14) was born with positional talipes, but was sorted out with physio within a few weeks. Her ankle does look like it goes over a little and when she was first walking we made sure she had good supporting ankle boots, thankfully being a september baby this was over winter.

Devora sorry for the millions of qus, cannot find the info online. Any idea how long cast etc stays on for? Or is it totally dependent on age/rotation?

Bruffin guessing that your DD had inward? Was she breech? I am now feeling a little cross that they didn't check my DS (aside from hip check) after he was born. Looking at the pics, his foot has been like this since birth .

Yes they were inward and no she wasn't breech. Her feet were stuck up under my ribs and I think she was a bit squashed as she arrived 3 weeks early.

Aw, love her. DS was the other way - couple of weeks late! Was it both feet? Sorry for millions of qus, I am just trying to fathom why no-one thought to check my DS a bit more. I know I shouldn't, but I am already looking at who I can 'blame' for all of this.

Yes, it was both feet, but it was obvious as DH said her feet didn't look right. Then when the doctor came round to do the checkup before we were discharged, the talipes was picked up and we were told they would send a PT round for a home visit. They then gave us some excercises to do with her feet every day.

Devora I spoke to Steps UK this morning and we have got a few Ponsetti specialists in Bristol, she's given me the names.

Heading to doctors now to pick up referral letter and get our appt booked ASAP. So desperate to know what will need to happen and when...have been gearing up for a return to work (big 2nd interview tomorrow) but that all suddenly feels irrelevant. Just want to be with him if he's stuck in cast for weeks on end , the thought of someone else helping him through that feels wrong.

OH good - great that you've finally got started.

My dd was only in plaster cast for one week - just to start the initial training. I don't know if that stage lasts longer for an older child, but I don't think it lasts long. What IS more likely to go on for months or even years is the shoes with bar. I don't really know how that works in a mobile child, I'm afraid.

BUT be positive - Ponseti seems to achieve really great results. And go onto the Steps talkboard to read up on others' experiences.

Good luck and keep us posted.

Oh this is sending me into a bit of a panic! DD had positional talipes when she was born and we were told it would self correct, but to do gentle movements to help it (which we did). I did check again with Dr at 4 months who said as it could be easily moved to the right position it would self-correct especially when she starts walking. She's now 10 months and starting to walk with a push-along, but she kind of drags one foot and it's out at a right angle. It does go easily to a normal position if I move it, but she doesn't naturally hold it like that. I'd sort of forgotten about it as she's been getting about fine crawling etc, but now that in the past couple of weeks she's been pushing along a walker it seems very noticeable that she's dragging that foot/leg. I'd better make a GP appointment and see what they say , I'm very worried now that I should have gone back to the GP earlier but I thought it would sort itself out.

Don't worry Zimbah, I still haven't seen the specialist and do wonder if they will say that we should wait until he starts to properly walk. But my main worry is that because he's had osteo (similar to physio, I guess) it means that it's NOT going to self-correct.

See what your GP says and I will keep you posted on how our meetings go. I don't think I am going to get a specialist appt for a few weeks, but my GP has been super and sent letters asking consultant to see DS ASAP, which is kind.

Thanks Milla, will be interested to hear your progress, hopefully you won't have to wait too long to get see the specialist. I'm going to ring the GP on Monday to get an appointment.

hi i was born with positional talipes and wore boots with a bar as a baby and well - just wanted to reassure really. i have no memory of the boots though am sure my parents were upset by them at the time and have no ongoing physical problems. good luck