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Original poster

clubfoot / talipes treatment

14 replies

dinkyboysmum · 07/09/2007 20:40

hi,
just wondering if anyone has any advice:
ds had a fixed talipes on his right foot when he was born. he has been undergoing the 'ponsetti' method to try and correct it.
He was fitted with his boots&bars this week and HATES them! he is 12 weeks old now. he has to wear them 23hrs a day. he is fine when asleep, but then he wakes and realises he can't move his feet! i know it is just time, and he has to get used to them, but it is breaking my heart to see him like this.
anyone else gone/going through similar experience?

OP posts:

skerriesmum · 07/09/2007 20:45

Yep! My son is 8 months now, we actually traveled to Iowa to be treated by Ponseti himself, long story...
Encourage him to kick and play in the brace when he's awake... my son is OK in them luckily!
Have you joined the clubfoot Yahoo group? It's very good for questions like this, there are members worldwide (we're in Canada.)

Original poster

dinkyboysmum · 07/09/2007 21:07

i'm just looking at the steps-charity website now...also very good! we're having such a nightmare, its really nice to listen to other people & know we're not alone in this!
when did you start your treatment? what sort of boots is your son in...i've just read the mitchells boots are the best (we have the denis brown/markells & they are causing lots of blisters/sores)

OP posts:

skerriesmum · 08/09/2007 00:19

We had "wrong" treatment at home for 7 weeks, then a month without casts, then 12 casts in Iowa, and now he's in the Mitchell brace. His feet are atypical though, difficult to treat. Did you go to Naomi Davis?

Bubbaloo · 08/09/2007 10:44

My ds1 was also born with talipes.He had the casts on from about 3 weeks old,for about 10 weeks,then went onto the boots.
Luckily he didn't have to wear the bar and he didn't seem to mind the boots,but I'm sure it would've been a different story if he had needed the bar.
He is now 27 months and although his right foot is still affected,his feet are definately alot better.He still has regular appointments with the consultant and still wears the boots from the hospital and will do for quite a while yet.
He started off with the white open toed boots(laces and buckles),but we now get a catalogue to choose his boots from and he's had some lovely pairs.You certainly wouldn't know they were from the hospital.

I have also heard Naomi Davis is very good.

Original poster

dinkyboysmum · 11/09/2007 12:19

we see mr uglow @ southampton...i have no complaints about the procedure & treatment we've received...it's just so long winded & ds is still not liking the boots (denis-brown). he's really bad at sleeping now, as he wakes often in discomfort (previously getting a good 7 houir stretch before boots fitred). got the communtiy nurse coming round later to help make them mroe comfortable - he is covered in blisters and sores...does this get easier????????

OP posts:

skerriesmum · 14/09/2007 02:54

Hi again,
That's interesting Bubaloo, what sort of boots are they? AFOs? I'm not sure how they would work without a bar as the bar maintains correct dorsiflexion (keeping the heels stretched and down.) Maybe in milder cases you don't need it.
DBM I have one friend whose daughter is in the boots and she said to make sure the socks are always pulled very taut, if there are any wrinkles, that can be really sore. You could try cornstarch or baby powder on the feet before putting the socks and shoes on too. Good luck...! It's not easy is it, but remember by the time they're going to school it's all over and they'll have feet like everyone else!

benandalex · 14/09/2007 06:32

please do not give in to him i know romexperience how hard itr can be my four year old son was born with bilateral talipes but the ponseti method really is the best so much better than the alternative and i should no i was treated my self by surgcal methods and i have so many problems now and always will do i am 26 and have arthritis and will need an ankle fusion in later life .

benandalex · 14/09/2007 06:37

sorry if that sounded bad i didnt mean to sound bossy but if u ever want to chat i can email you if you want ben is now 4 and half at the time you think it will never end but you will look back in a few years and realise that it was worth it. I had my last surgery when i was 18 and have scars up and down my leg and all over my foot i so wish they had at least tried the ponseti with mw but u are doing the best for him and belive me hand on heart when i say they do get used to the boots and it does gets easier. Also have u been putting socks on with the boots as i found this helped with ben ((((()))))

skerriesmum · 14/09/2007 20:12

Hi benandalex, so clubfeet are obviously in your family... Does your son still wear the boots at night? The new advice is to wear them until age 4 or 5...
I am so, so glad we persisted and saw Ponseti, our ds's feet would have needed 3 or 4 surgeries if we'd gone that route, disaster! I'm so sorry you have foot pain now, that must be hard.

benandalex · 15/09/2007 15:53

i was the first person in my family to have it and was told it was just a fluke but obviosuly it must be in mine and my sons genes, he stopped wearing the boots when he was 3

Original poster

dinkyboysmum · 17/09/2007 08:36

just thought i'd drop an update-
things are MUCH better here- ds has definilty got used to the boots & bars now- much more contented & sleeping much better now. although the first week or 2 were aweful, we're much happier now!

OP posts:

benandalex · 17/09/2007 12:04

im really pleased to hear that and believe me before you know it , he will be running about and u wont be able to tell he ever had any probs :D

babalon · 17/09/2007 21:52

Glad to hear that things are better, my DS2 has bilateral talipes and had a real time of it in markell boots but I appealled for funding for the mitchells and eventually won. He is so much better in these.

Come and post on the Steps forum I'm 'shadow' on there. I've found it a great support.

I swear by compeed blister plasters to prevent sores! Good luck maybe speak soon

twinkle5 · 19/09/2007 19:39

sorry dinkyboysmum,
i have just seen this but felt I had to reply. My son was born in June with fixed talipes in both feet. We have been following the ponsetti method too, and are just starting our 5th week in boots and bar. Well I could have written your post myself- infact I just asked DH if he is 'dinkyboysmum' DS hated his boots in week one, it was horrible, he was obviously uncomfortable and it was distressing at times knowing that we had to keep the boots on. When we went for the check up at 10 days the physio saw how much ds hated them and switched us straight to Mitchell's ( I didn't ask!). DS has been a changed boy ever since, he doesn't even notice us putting them on anymore
Push for Mitchell's if you haven't done so already- the best practitioner in England, Naomi Davis, doesn't give anything else! We are in Brighton BTW. Hope you get to see this!

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