Re: Update and need support

[Guest guest]

If she continues to cry, I would suggest calling Dr P. The external

rotation should not be bothering her - especially since she did not

cry durring the manipulation! It definitely is NOT normal. I am

sorry, I dont have any ideas on what to do but I am sending you

big virtual HUGS

Angel

> Update on our first tip to Iowa City.

> Dr Ponseti said that Tori does have atypical cf but that they seem

> flexible which is good. He put her in another set of cast and boy

> was I surprised, her last set of cast from the previous Dr was no

> ware near as turned out as what her feet are now. She was ok

during

> the casting but started crying about 3 hours from home and has been

> crying ever sense. On Wednesday and Thursday she would sleep for

an

> hour or two then wake up and cry for a ½ hour to an hour. There is

> nothing I could do to get her to stop crying. Is this normal? She

is

> still plenty fussy but seems to be doing a little better today. We

> go back for a cast change on Monday is she going to be like this

> again after the next set of cast? She never cried like this for

her

> initial set of castings but her feet weren't turned out near as

far.

> After cast on Monday we will have the Tenotomy on Thursday then

after

> the 3 week cast we will be in the Markell shoes. Is anyone going

to

> be in Iowa City next week? I don't think I can adequately type how

> hard this has been but I know that you all have been there too.

> Thanks,

>

>

> Tori 1/30/04 bilateral cf, back in cast

[Guest guest]

If she continues to cry, I would suggest calling Dr P. The external

rotation should not be bothering her - especially since she did not

cry durring the manipulation! It definitely is NOT normal. I am

sorry, I dont have any ideas on what to do but I am sending you

big virtual HUGS

Angel

> Update on our first tip to Iowa City.

> Dr Ponseti said that Tori does have atypical cf but that they seem

> flexible which is good. He put her in another set of cast and boy

> was I surprised, her last set of cast from the previous Dr was no

> ware near as turned out as what her feet are now. She was ok

during

> the casting but started crying about 3 hours from home and has been

> crying ever sense. On Wednesday and Thursday she would sleep for

an

> hour or two then wake up and cry for a ½ hour to an hour. There is

> nothing I could do to get her to stop crying. Is this normal? She

is

> still plenty fussy but seems to be doing a little better today. We

> go back for a cast change on Monday is she going to be like this

> again after the next set of cast? She never cried like this for

her

> initial set of castings but her feet weren't turned out near as

far.

> After cast on Monday we will have the Tenotomy on Thursday then

after

> the 3 week cast we will be in the Markell shoes. Is anyone going

to

> be in Iowa City next week? I don't think I can adequately type how

> hard this has been but I know that you all have been there too.

> Thanks,

>

>

> Tori 1/30/04 bilateral cf, back in cast

[Guest guest]

,

Dr. Ponseti has said in the past that sometimes older children who

have not had casts on for a while can find the casts with the

hyperabduction a bit uncomfortable (turning the feet out). Dr.

Ponseti has found that the hyperabduction is one of the things that

help reduce the risk of relapsing later.

One of the things that we parents have noticed over the years is that

sometimes doctors new to the Ponseti method do not hyperabduct the

feet out to the full 70 degrees that Dr. Ponseti recommends with the

15 degrees of dorsiflexion. Then when the children got into the

FAB/DBB, they are not used to the 70 degrees and 15 degrees of

dorsiflexion and so fight wearing the shoes. These things perhaps

make it more likely that relapsing can occur.

What Dr. Ponseti is doing is following his method as it was designed

so that your childs feet will be overcorrected enough to be more

comfortable in the FAB/DBB and that you will have a much lower risk

of relapsing.

and (3-17-99)

> Update on our first tip to Iowa City.

> Dr Ponseti said that Tori does have atypical cf but that they seem

> flexible which is good. He put her in another set of cast and boy

> was I surprised, her last set of cast from the previous Dr was no

> ware near as turned out as what her feet are now. She was ok

during

> the casting but started crying about 3 hours from home and has been

> crying ever sense. On Wednesday and Thursday she would sleep for

an

> hour or two then wake up and cry for a ½ hour to an hour. There is

> nothing I could do to get her to stop crying. Is this normal? She

is

> still plenty fussy but seems to be doing a little better today. We

> go back for a cast change on Monday is she going to be like this

> again after the next set of cast? She never cried like this for

her

> initial set of castings but her feet weren't turned out near as

far.

> After cast on Monday we will have the Tenotomy on Thursday then

after

> the 3 week cast we will be in the Markell shoes. Is anyone going

to

> be in Iowa City next week? I don't think I can adequately type how

> hard this has been but I know that you all have been there too.

> Thanks,

>

>

> Tori 1/30/04 bilateral cf, back in cast

[Guest guest]

,

Dr. Ponseti has said in the past that sometimes older children who

have not had casts on for a while can find the casts with the

hyperabduction a bit uncomfortable (turning the feet out). Dr.

Ponseti has found that the hyperabduction is one of the things that

help reduce the risk of relapsing later.

One of the things that we parents have noticed over the years is that

sometimes doctors new to the Ponseti method do not hyperabduct the

feet out to the full 70 degrees that Dr. Ponseti recommends with the

15 degrees of dorsiflexion. Then when the children got into the

FAB/DBB, they are not used to the 70 degrees and 15 degrees of

dorsiflexion and so fight wearing the shoes. These things perhaps

make it more likely that relapsing can occur.

What Dr. Ponseti is doing is following his method as it was designed

so that your childs feet will be overcorrected enough to be more

comfortable in the FAB/DBB and that you will have a much lower risk

of relapsing.

and (3-17-99)

> Update on our first tip to Iowa City.

> Dr Ponseti said that Tori does have atypical cf but that they seem

> flexible which is good. He put her in another set of cast and boy

> was I surprised, her last set of cast from the previous Dr was no

> ware near as turned out as what her feet are now. She was ok

during

> the casting but started crying about 3 hours from home and has been

> crying ever sense. On Wednesday and Thursday she would sleep for

an

> hour or two then wake up and cry for a ½ hour to an hour. There is

> nothing I could do to get her to stop crying. Is this normal? She

is

> still plenty fussy but seems to be doing a little better today. We

> go back for a cast change on Monday is she going to be like this

> again after the next set of cast? She never cried like this for

her

> initial set of castings but her feet weren't turned out near as

far.

> After cast on Monday we will have the Tenotomy on Thursday then

after

> the 3 week cast we will be in the Markell shoes. Is anyone going

to

> be in Iowa City next week? I don't think I can adequately type how

> hard this has been but I know that you all have been there too.

> Thanks,

>

>

> Tori 1/30/04 bilateral cf, back in cast

[Guest guest]

,

Dr. Ponseti has said in the past that sometimes older children who

have not had casts on for a while can find the casts with the

hyperabduction a bit uncomfortable (turning the feet out). Dr.

Ponseti has found that the hyperabduction is one of the things that

help reduce the risk of relapsing later.

One of the things that we parents have noticed over the years is that

sometimes doctors new to the Ponseti method do not hyperabduct the

feet out to the full 70 degrees that Dr. Ponseti recommends with the

15 degrees of dorsiflexion. Then when the children got into the

FAB/DBB, they are not used to the 70 degrees and 15 degrees of

dorsiflexion and so fight wearing the shoes. These things perhaps

make it more likely that relapsing can occur.

What Dr. Ponseti is doing is following his method as it was designed

so that your childs feet will be overcorrected enough to be more

comfortable in the FAB/DBB and that you will have a much lower risk

of relapsing.

and (3-17-99)

> Update on our first tip to Iowa City.

> Dr Ponseti said that Tori does have atypical cf but that they seem

> flexible which is good. He put her in another set of cast and boy

> was I surprised, her last set of cast from the previous Dr was no

> ware near as turned out as what her feet are now. She was ok

during

> the casting but started crying about 3 hours from home and has been

> crying ever sense. On Wednesday and Thursday she would sleep for

an

> hour or two then wake up and cry for a ½ hour to an hour. There is

> nothing I could do to get her to stop crying. Is this normal? She

is

> still plenty fussy but seems to be doing a little better today. We

> go back for a cast change on Monday is she going to be like this

> again after the next set of cast? She never cried like this for

her

> initial set of castings but her feet weren't turned out near as

far.

> After cast on Monday we will have the Tenotomy on Thursday then

after

> the 3 week cast we will be in the Markell shoes. Is anyone going

to

> be in Iowa City next week? I don't think I can adequately type how

> hard this has been but I know that you all have been there too.

> Thanks,

>

>

> Tori 1/30/04 bilateral cf, back in cast

[Guest guest]

I agree I would call Dr. P and let them know. They can provide the

best suggestions. It may just be getting used to the position, or

someplace pinching or binding. Good luck.

> Update on our first tip to Iowa City.

> Dr Ponseti said that Tori does have atypical cf but that they seem

> flexible which is good. He put her in another set of cast and boy

> was I surprised, her last set of cast from the previous Dr was no

> ware near as turned out as what her feet are now. She was ok

during

> the casting but started crying about 3 hours from home and has

been

> crying ever sense. On Wednesday and Thursday she would sleep for

an

> hour or two then wake up and cry for a ½ hour to an hour. There

is

> nothing I could do to get her to stop crying. Is this normal? She

is

> still plenty fussy but seems to be doing a little better today.

We

> go back for a cast change on Monday is she going to be like this

> again after the next set of cast? She never cried like this for

her

> initial set of castings but her feet weren't turned out near as

far.

> After cast on Monday we will have the Tenotomy on Thursday then

after

> the 3 week cast we will be in the Markell shoes. Is anyone going

to

> be in Iowa City next week? I don't think I can adequately type

how

> hard this has been but I know that you all have been there too.

> Thanks,

>

>

> Tori 1/30/04 bilateral cf, back in cast

[Guest guest]

I agree I would call Dr. P and let them know. They can provide the

best suggestions. It may just be getting used to the position, or

someplace pinching or binding. Good luck.

> Update on our first tip to Iowa City.

> Dr Ponseti said that Tori does have atypical cf but that they seem

> flexible which is good. He put her in another set of cast and boy

> was I surprised, her last set of cast from the previous Dr was no

> ware near as turned out as what her feet are now. She was ok

during

> the casting but started crying about 3 hours from home and has

been

> crying ever sense. On Wednesday and Thursday she would sleep for

an

> hour or two then wake up and cry for a ½ hour to an hour. There

is

> nothing I could do to get her to stop crying. Is this normal? She

is

> still plenty fussy but seems to be doing a little better today.

We

> go back for a cast change on Monday is she going to be like this

> again after the next set of cast? She never cried like this for

her

> initial set of castings but her feet weren't turned out near as

far.

> After cast on Monday we will have the Tenotomy on Thursday then

after

> the 3 week cast we will be in the Markell shoes. Is anyone going

to

> be in Iowa City next week? I don't think I can adequately type

how

> hard this has been but I know that you all have been there too.

> Thanks,

>

>

> Tori 1/30/04 bilateral cf, back in cast

[Guest guest]

,

Sorry I just saw your post this am (Saturday).

We had Sophia treated by Dr. Ponseti as well, starting when she was 2

weeks old (we went to another Doctor for her first cast at 1 week

old). Sophia never did well with the castings or the manipulations.

Her feet were pretty stiff, though. Her 3rd Dr. Ponseti cast (she

had 5 total) seemed to hurt her a lot. I think they wrapped it too

tight and she was really fussy for a good 2 days AND nights ((they

had a visiting Doctor apply the cast and I don't think in retrospect

that he had a lot of experience (or any?) with castings)). She was

so fussy and her one foot looked a little gray, so we stopped back

into the hospital to have it checked out. Her foot was o.k. and she

was better after that day. That was the worst case for us, though.

After that, we started giving her a small dose of Tylenol AFTER each

casting to help with the discomfort and to minimize the swelling that

comes from the manipulations. I do think the Tylenol helped. Also,

I've heard keeping their legs raised up helps, too.

Is she still really fussy now? If she is, I'd take her in to have it

checked out. Did you make sure that her toes turn white and then

regain their color when you press on them? That's a long time for

her to be uncomfortable and that doesn't sound normal.

Believe me I know what you're going through right now. It will get

better and it is so worth it. It's hard to see your little one

suffering, especially when there seems to be nothing that you can do

to console them. Hang in there. HTH.

Chris

mom to Sophia 12/8/03 bicf