Talipes

[ecco]

Does anyone have a child with Talipes? Please give me information regarding treatment of this condition, thanks.

DS had it but his was only positional, due to being breech for most of the pregnancy. We had to go to physio, and had to tickle his feet several times a day

Fiodyl - Could they tell from your scans that it was only positional and not a severe problem?

yes i have a DS who is 11 months, he was born with talipes of both feet. What exactly do you want to know? Are you pregnant and found out on a scan?

twinle5 - yes I found out at scan, and it is talipes of both feet. I am wanting to know about what the treatment involves, how long the treatment lasts, and is it successful. Is it very stressful for you and the baby? Is your child still having treatment?

ok here goes! Firstly, your baby will develope normally, ds has sat, crawled, pulled to standing and is now cruising- all on a par with his peers. Secondly, after the first couple of weeks of treatment your baby's feet will look 'normal' (at least to an untrained eye- you will become a foot expert!).
There are 2 different treatment paths which can be followed in the UK at the monment. one is surgical and has quick results but poor longterm success- painful feet later in childhood. The second in non-surgical and is called the Ponseti method. This has been done in America for years but only more recently here. The longterm outlook is great, with normal functioning feet. We are lucky enough to be in an area which offers this treatment method- where abouts are you?
Ponseti method starts when baby is 1 or 2 weeks old. Each week the feet are put in to casts, gradually trning them outwards. This should take about 5-7 casts/weeks. The casting process is a bit stressful but once in the casts my ds was fine. After the feet are in a good position it is usually necessary for the tendon on the back of the heel to be snipped - this is done with numbing cream and takes 5 mins, then the feet are re-cast for 2 weeks. after that the baby is fitted with a special boot brace which is worn for 3 months day and night. To begin with this was the most stressful part for us as ds found them uncomfy. We got a different brand and he was then fine! After 3 months, the boots are just worn at night time. Remember, by this time your baby will only be 5 or 6 months old!
At times it is difficult- more for you that the baby! We are now well in to wearing the boots at night time, it is just part of his bedtime routine- bath, boots, books, boob, bed! He knows no different, and will know o different until he is 4- a daunting thought for us at times.
Enjoy your pregnancy, we didn't find out on the scan and I'm glad- the internet can be a scary place!
Anymore questions please feel free to ask- you can CAT me if you like!
HTH

Hi Ecco,

My nephew was born with bilateral talipes - picked up at the anomly scan. It was severe in both feet. Ponseti method used. Traumatic for my sister and her DH (baby in casts etc.) However, the treatment worked a treat. Crawled, walked etc. normally and feet are perfect. Wears special boots in bed now but that's it (he's 2.5 years old)

If you go onto the Steps website there is a whole section/forum dedicated to the topic.

Great post from Twinkle5 but do ask all you want - my sister goes on the steps forum and I know would be happy to look out for you there.

Hi ecco!

My DS2 who is almost 7 was born with bilateral talipes. It was dx'd at the 20 week scan.

Firstly, congratulations on your pregnancy! Second, please don't worry!

Talipes is eminently treatable. DS2's feet look absolutely fine and dandy now - no-one other than an orthopaedic surgeon would ever know from looking at him that he had been born with talipes.

Most if not all hospitals now use what is called the Ponseti method to treat talipes. The treatment involves manipulation of the feet and plaster casting and usually starts within a couple of weeks of birth. Casts are changed fortnightly.

After about 6-7 lots of casting (I think - it is a long time ago for us now!) the child has a very minor surgical procedure called a tenotomy. This is very straightforward - DS2 was playing happily in the hospital playroom on the evening after his surgery. S

urgery is followed by another one or two sets of plaster casts and then the child goes into special boots which have a bar between the heels which keep the feet in the correct position. Once the child is ready to learn to walk, the boots can be taken off for intervals, although the child still has to wear them for naps and nighttime.

Ds2 was allowed to stop wearing his boots at nighttime when he was coming up to age 4.

He's just recently been back to see the consultant for a final check-up and has now been discharged (and I stood and wept in the hospital carpark, sentimental old so and so that I am).

ds was born 6 weeks prem, with bilateral fixed talipes on this right foot only, nto picked up at scan. we are following the ponsetti treatment at southampton hospital & they have been fab. he started walking at 10 months and is in no pain at all. Still wears boots &bars at night, but like twinkle5 said, he knows no difference. i guess they are like a sort of security blanket. he seems to be quite restless if i ever leave them off.
Dont worry. there are so many things they can do these days. you are lucky to find out now, because you'll have time to get a plan in your head & talk to people about it. although there is nothing you can do about it until little'un pops out. If you think about all the other hurdles/conditions that you've overcome/yet to pose in pregnancy, this really is quite a minor structural issue. DS was 6 wks prem and spent 2wks in scbu, his foot was the least of our worries! they really are so adaptable. ds was rolling over, whilst wearing his boots and bars, before his similar aged baby friends! he's a trooper!
good luck with it all*

Sixpot, I can't wait for that day to come where I will be sobbing in the carpark!
Dinkyboysmum, I'm pleased your DS is doing well- I tried to CAT you months ago when you first posted about the talipes but it didn't work for some reason. How are the boots now? I remember you talking about them being uncomfortable.
Ecco, I will be emailing you, thanks for the message.

Just to add to what elfsaid about the STEPS forum. It can be useful, but I find it a bit scary TBH. It seems to be a place where PROBLEMS are discussed with regards to the treatment- there are far more positive stories in real life it's just that people don't bother posting 'all is well'!

There are a couple of Yahoo groups as well which I used to be a member of. One of them is called something like nosurgery4clubfoot - the name harks back to the days when surgery was the usual treatment and the Ponseti method was little-known and not widely available.

Because of that, we used to have to take DS2 to Sunderland fortnightly (we live in London) to see the consultant and have his casts changed!

twinkle5, you will not believe how quickly the time goes by, believe me! When we were in the throes of it all, I used to think the day would never come - particularly as DS2 (the monkey) managed to loosen at least three of his casts resulting in us having to take them off prematurely! I thought he'd have dreadful complications. but he never did. The consultant in Sunderland is just absolutely wonderful.

My ds has arthrogryposis which is a joint condition like talipes but ni all his joints....ironically his feet are actually the best...just neede regular physio to get them in a good position for standing/walking. it's his hips and knees that have caused im the problems walking not his feet or ankles. His wrists and hands were particularly bad but have managed to achieve reasonable function with serial splinting. A lot of children with arthrogryposis have serial casts and splints to get their limbs into better functioning positions. Ds saw a orthopaedic consultant at GOSH when he was 18 months (he's now 19 btw) who back then strongly advised against surgery to correct any of his joints, especially his hands. He said that with hands and feet in particular (talipes is common in dcs with arthrogryposis) the temptation was to dive in and correct the position with surgery but unless the child was developmentally ready to stand/walk the feet would probably revert back and be even stiffer because of scar tissue from surgery and with hands although they may look more "normal" this was quite often at the expense of function. He said much better results could be achieved with serial casting and patience. All this was nearly 20 years ago so it is reassuring to read that surgery no longer seems to be the norm.

That's really interesting, shouldbeworking .

Yes, it is very much the case that surgery for clubfoot has been relegated to the sidelines now. DS2 was on the brink of having surgery when we heard about the Ponseti method. I am so glad that we did what we did, even though the travelling to and from Sunderland was quite arduous.

Moomintroll had talipes of right foot due to antenatal position, diagnosed at 2 days old and we were given exercises/ tickling stimulation to do until he went for first paeds appt. They had the plaster etc ready for casts at first appt but he'd progressed so well with the exercises they said to carry on and they'd wait and see. He's now 19 wks and we were told at last appt that they're completely satisfied he'll need no other treatment. Maybe not the most serious case, I don't really know. Hope all goes well for you and sending positivity

Ecco, just to add to others here, ds is now 7 months ld and exactly this time last year I was told about his bilat talipes. We have been following the ponseti treatment and he has been fantastic, has never complained or fussed throughout all of the stages. He is not in his boots at nightime and in the daytime he crawls, rolls, generally keeps me on my toes constantly! Nobody would ever guess he was born with the condition.
I found Steps and the forum a great help, everyone very supportive and great practical advice.
I am not saying it is a picnic (for parents!), but chances are your lo will cope brilliantly
Sixspotburnet, if you are still around, everything going great (I have had a name change too!) and maybe we will meet some day - the end of my pregnancy was nice and dramatic so I never got to see your ds' feet! Hope you can guess who I am

Thanks for all the info and advice, its very reassuring.

My son was born with Talipes he is now 4 years old and i'm still fighting for him to receive treatment. it have progessed drastically where it is effecting him physically mentally and emotionally the same while he is in school. seen Drs but have refused treatment until he is 14 year old which I think myself in unacceptable because he is in a lot pain with it and falling over quiet a few times a day and really hurting himself.