Re: New member from Italy!

[Guest guest]

>

> e,

>

> Let me get this straight: Your son went three weeks with no casts

and not DBB, is that correct?

Hi, sorry for the delay in getting back...hard times with ddb!!!

No, my son weared ddb after 1 week from the post tenotomy cast, as

the skin was having problems.

However, we are still having problems especially at night but also

in the day, maybe because of a lot of issues (bar measure, shoes

slip off often, etc). We also tried the plastezote insert that

should prevent the feet from slipping but no success.

What we are doing now is ordering the P/M brace whose shoes seems to

be more confortable and while we wait, we will ask the doctor to

cast him once or twice so his feet will be ready to wear the new

brace when it arrives.

What can I say...it's a matter of try and learn but here in Italy,

Ponseti method seems to be virtually unknown except for one Dr.

based in Rome (Mr. Ippolito who wrote articles with Ponseti) and

another here in Milan (who doesn't have the experience of Mr.

Ippolito). It's silly but they don't talk to each other: when I

contacted Mr. Ippolito he told me that it is the one and the only

one expert in Italy...our Dr here in Milan says that he (mr.

Ippolito) doesn't even reply to his email. Wow, lucky me then!

Tipically Italian behaviour...

Anyhow, would be rude to contact Ponseti himself asking (even if

with all the limitation of the case) for an evaluation of the

situation? I could attach a couple of pictures as I think that he

could see if something is wrong.

Thanks!

[Guest guest]

Dr. Ponseti would be happy to review your son's pictures and tell

you what he thinks. You could also have your current doctor consult

with Dr. Ponseti as well. Maybe Dr. Ponseti could convince Dr.

Ippolito to talk with your doctor!!! The P/M brace won't do your

son much good if the feet are not truly corrected- so yes, it would

be good to get another doctor to give input if at all possible.

Take pictures of the front, back, both sides and bottoms of your

son's feet, and try to take pictures of him standing (weight

bearing) if at all possible.

Lots of families from all over the world have sent their child's

information to Dr. Ponseti asking for his advice. He is very

gracious about corresponding with so many families because he cares

very much about all children, not just those that his hands actually

touch! He is in the office on Monday, Wednesday and Friday. His

assistant is Joyce Roller who types up his correspondance.

Please keep us posted! In the short term, if you want to share

pictures with the families here, you can join the yahoo group CFPics

where members are screened so that attachments are allowed. We can

give you our unofficial opinions on the brace and feet if you want.

Regards,

& (3-16-00, left clubfoot)

http://ponseticlubfoot.freeservers.com/

>

> Anyhow, would be rude to contact Ponseti himself asking (even if

> with all the limitation of the case) for an evaluation of the

> situation? I could attach a couple of pictures as I think that he

> could see if something is wrong.

>

> Thanks!

>

[Guest guest]

e,

Ciao! We too were getting treatment for our 10 month old daughter in

Italy, in Napoli, in fact. We were having a very difficult time with

things, as you can imagine. Doctors there did not seem to be very

receptive of anything that seemed new as far as treatment. They

didn't even use the Ponseti technique at all in Naples! We have

now moved back to the states, and are now in the DBB after getting

the Ponseti casts once we moved back to the states. Our daughter is

also having a difficult time sleeping with the DBB, and slipping out

of them was a problem also. I have learned a few tricks along the

way that you may find helpful: If you can find some socks that have

a rubber grip on the bottom, this helps. Gap and Old Navy sell them,

but I know that would be difficult to come by in Italy. When we were

still in Naples, we bought some from a Baby Gap in Paris to fit over

her casts. We never tried gap.com to see if they could be sent to

us overseas, since we were in Paris visiting anyway. If you are able

to find

these socks, or something similar, the baby does not slip out of the

shoes nearly as easily. We also make sure that there is extra

padding in the back of her shoes, above her heel. The doctors here

add some padding, but I also hot glue extra padding from a first aid

kit into her shoes. This helps keep her heel from coming out as

easily. The last thing that I have learned is about

sleep sacks. That is the name that they are sold by here, but in

Naples, there was a lady that handmade them. In English, I think

that what I remember was that it translated to a halo bag, but I

could be wrong. I have long since taken the tag off of the one that

we bought for her in Naples when she was an infant. If you have not

heard of these, they are essentially a cotton sack that you can zip

up over the baby almost like footed pajamas, but with a wide bottom,

instead of individual leg pieces, it's almost like a sleeping bag

for your infant. This helps keep her feet a little more contained,

and I am less tempted to take off her bar to give us a " break " when

she is crying at night.

I don't know if any of this helps, but let me know.

Good luck/Fortuna buona!

>

> Hello everybody,

>

> I am e from Italy, father of Alessandro (almost 4

> months) with congenital bilateral clubfoot. I recently

> joined this list as my baby is being treated according

> to Ponseti method but, as almost everyone, I am

> experiencing problems with the DDB.

> The casts went well (6) and so the tenotomy now it's

> the DDB time! Well, I can say that during the day,

> Alessandro is doing well but he can't stand it in the

> night when I am forced to take it away (when I do so,

> he sleeps in a minute), However I know that the DDB

> has to be worn 23 hours a day but it seems impossible.

> What I have noted is that, with time, the foot tends

> to slip from the shoe (sometimes the left, sometimes

> the right) and I re-adjust it. It is strange because

> the shoe is very tightened and I use two pairs of

> cotton socks. I checked with Markell measurement sheet

> if the size is correct and it seems so (the size is

> M00), so it remains to check if the bar is the same

> length of the shoulders. How do I measure it? Should I

> consider the distance between heels and compare it

> with shoulders? Should the bar length be something

> more?

> I really can't think about other causes, maybe could

> be also that the correction has been lost? Consider

> that a week has passed between the 3-week cast removal

> and the installation of the brace (the feet were

> blistered).

> We talk to the doctor and he told us to change the

> shoes however, you should know that Ponseti method in

> Italy is virtually unknown: there is a doctor in Rome

> who studied with Ponseti (but I am in Milan) and

> another who is applying the method in my city but with

> a relatively little experience. Obviously, we are

> fully aware of Ponseti procedure and we discussed a

> lot of issues with the doctor but he is following many

> patients and I believe he can't dedicate the correct

> amount of time to everybody. I know that Dr. Ponseti

> replies to emails promptly, here, the italian doctors

> do not return calls...

> Anyway, 99% of italian babies with clubfoot is treated

> with surgery, therefore I am lucky but still

> experiencing problems with DDB with the result of

> making another cast as correction is not good as it

> should be.

> One last thing: do you suggest to switch to

> Ponseti/ AFO which seems to be better (I read

> some positive comments in some email today)?

>

> Do you have any tips about avoiding feet slipping that

> I can discuss with doctors?

> Thanks

> e

>

>

>

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