Re: Re: Kansas City Ponseti Dr

[Guest guest]

Rob,

From what you are telling us, it sounds like your doctor is not following Dr

Ponseti's protocol very closely. It also sounds like you are well aware of

this. Have you considered sending pictures of Leah's feet and a run-down of her

treatment up to now to Dr Ponseti? He will give you a frank assessment of what

he sees. And perhaps his opinion will mean something more to your wife than

yours does. Know what I mean?

Also, if you are *only* 8 hours away from Dr Dobbs, you really ought to consider

seeing him. I know I've read about families using Angel Flights to get to St

Louis from Texas and perhaps Kansas as well.

Please let us know if there is anything else we can help with.

All the best to you and yours,

Naomi

The Family

Naomi Hannah Jonah(06/20/03, bilateral clubfoot, FAB 16/7)

Heartland Images list@...> wrote:

>I think it's a good idea that you're seeking a second opinion. I have

>often wondered why Leah is in AFO's instead of the DBB. Did she ever wear

>it 23/7? Also, the picture you sent to the CFPics list is about as cute as

>can be! Why was she re-casted? Did I miss something or did you not post

>before she went into her new casts?

Leah wears both AFOs and the DBB (we can clamp on normal shoes to the bar).

She wore the DBB 23/7 for 3 months following her first Achilles release,

then dropped to 12 hrs (too fast a drop, I know from what has been said

here). She had a second Achilles release 6 weeks ago because her right

Achilles really tightened back up, and the left one was sorta tight, so the

doc release both along with the plantaris and big toe tendons. She is back

in the AFO and DBB as of Tuesday. She is staying in the AFOs better this

time so far; we had a lot of trouble with the right foot with the original

AFOs. There is extra dorisflexion built into the new AFOs to help keep the

tendons stretched. She isn't wanting to crawl or pull up like she was

before the casts came off; hopefully she will adjust soon as she is cranky

due to lack of mobility and cutting her third tooth.

My biggest concern is that except for regaining the dorsiflexion after the

release, her feet don't look any different. There is a difference between

the 2 feet. The left looks fairly normal, but I don't like how the right

foot looks. The toes point medially, the mid foot looks ok, but she keeps

rotating the outer edge under. All this was present before the second

release, and I was hoping the release and subsequent casting would correct

these differences. My gut says that things aren't as good as they should

be, but convincing that a second opinion is needed won't be easy.

has faith that Dr. Hakala knows what he is doing, and knows best. I

think part of this faith is arising from the misery she underwent to

correct her clubfeet and since Leah's treatment appears to be going so much

better than hers, things are ok. She is more of an optimist than I am (I

tend to be more pessimistic which may be clouding my judgement). I am

becoming more concerned as time goes by. I do think that Dr. Hakala is a

good doctor, and the original corrections went well, but I'm still getting

concerned. Leah has distal arthrogryposis which is complicating things.

thanks,

Rob, (bilateral cf), Leah (bilateral, 12-18-03)

[Guest guest]

The outer edge of the foot trying to turn under is a bad sign. And really, if

your wife had club feet it seems she would want to learn as much as she could to

avoid the suffering in her own child - I don't understand her attitude, but then

again, it's not mine to understand. Will she not read some of this board's

messages? There are photo files galore proving the effectiveness of Ponseti's

work, as well as stories about both good and bad treatments.

s.

Re: Re: Kansas City Ponseti Dr

Rob,

From what you are telling us, it sounds like your doctor is not following Dr

Ponseti's protocol very closely. It also sounds like you are well aware of

this. Have you considered sending pictures of Leah's feet and a run-down of her

treatment up to now to Dr Ponseti? He will give you a frank assessment of what

he sees. And perhaps his opinion will mean something more to your wife than

yours does. Know what I mean?

Also, if you are *only* 8 hours away from Dr Dobbs, you really ought to consider

seeing him. I know I've read about families using Angel Flights to get to St

Louis from Texas and perhaps Kansas as well.

Please let us know if there is anything else we can help with.

All the best to you and yours,

Naomi

The Family

Naomi Hannah Jonah(06/20/03, bilateral clubfoot, FAB 16/7)

Heartland Images list@...> wrote:

>I think it's a good idea that you're seeking a second opinion. I have

>often wondered why Leah is in AFO's instead of the DBB. Did she ever wear

>it 23/7? Also, the picture you sent to the CFPics list is about as cute as

>can be! Why was she re-casted? Did I miss something or did you not post

>before she went into her new casts?

Leah wears both AFOs and the DBB (we can clamp on normal shoes to the bar).

She wore the DBB 23/7 for 3 months following her first Achilles release,

then dropped to 12 hrs (too fast a drop, I know from what has been said

here). She had a second Achilles release 6 weeks ago because her right

Achilles really tightened back up, and the left one was sorta tight, so the

doc release both along with the plantaris and big toe tendons. She is back

in the AFO and DBB as of Tuesday. She is staying in the AFOs better this

time so far; we had a lot of trouble with the right foot with the original

AFOs. There is extra dorisflexion built into the new AFOs to help keep the

tendons stretched. She isn't wanting to crawl or pull up like she was

before the casts came off; hopefully she will adjust soon as she is cranky

due to lack of mobility and cutting her third tooth.

My biggest concern is that except for regaining the dorsiflexion after the

release, her feet don't look any different. There is a difference between

the 2 feet. The left looks fairly normal, but I don't like how the right

foot looks. The toes point medially, the mid foot looks ok, but she keeps

rotating the outer edge under. All this was present before the second

release, and I was hoping the release and subsequent casting would correct

these differences. My gut says that things aren't as good as they should

be, but convincing that a second opinion is needed won't be easy.

has faith that Dr. Hakala knows what he is doing, and knows best. I

think part of this faith is arising from the misery she underwent to

correct her clubfeet and since Leah's treatment appears to be going so much

better than hers, things are ok. She is more of an optimist than I am (I

tend to be more pessimistic which may be clouding my judgement). I am

becoming more concerned as time goes by. I do think that Dr. Hakala is a

good doctor, and the original corrections went well, but I'm still getting

concerned. Leah has distal arthrogryposis which is complicating things.

thanks,

Rob, (bilateral cf), Leah (bilateral, 12-18-03)

[Guest guest]

The outer edge of the foot trying to turn under is a bad sign. And really, if

your wife had club feet it seems she would want to learn as much as she could to

avoid the suffering in her own child - I don't understand her attitude, but then

again, it's not mine to understand. Will she not read some of this board's

messages? There are photo files galore proving the effectiveness of Ponseti's

work, as well as stories about both good and bad treatments.

s.

Re: Re: Kansas City Ponseti Dr

Rob,

From what you are telling us, it sounds like your doctor is not following Dr

Ponseti's protocol very closely. It also sounds like you are well aware of

this. Have you considered sending pictures of Leah's feet and a run-down of her

treatment up to now to Dr Ponseti? He will give you a frank assessment of what

he sees. And perhaps his opinion will mean something more to your wife than

yours does. Know what I mean?

Also, if you are *only* 8 hours away from Dr Dobbs, you really ought to consider

seeing him. I know I've read about families using Angel Flights to get to St

Louis from Texas and perhaps Kansas as well.

Please let us know if there is anything else we can help with.

All the best to you and yours,

Naomi

The Family

Naomi Hannah Jonah(06/20/03, bilateral clubfoot, FAB 16/7)

Heartland Images list@...> wrote:

>I think it's a good idea that you're seeking a second opinion. I have

>often wondered why Leah is in AFO's instead of the DBB. Did she ever wear

>it 23/7? Also, the picture you sent to the CFPics list is about as cute as

>can be! Why was she re-casted? Did I miss something or did you not post

>before she went into her new casts?

Leah wears both AFOs and the DBB (we can clamp on normal shoes to the bar).

She wore the DBB 23/7 for 3 months following her first Achilles release,

then dropped to 12 hrs (too fast a drop, I know from what has been said

here). She had a second Achilles release 6 weeks ago because her right

Achilles really tightened back up, and the left one was sorta tight, so the

doc release both along with the plantaris and big toe tendons. She is back

in the AFO and DBB as of Tuesday. She is staying in the AFOs better this

time so far; we had a lot of trouble with the right foot with the original

AFOs. There is extra dorisflexion built into the new AFOs to help keep the

tendons stretched. She isn't wanting to crawl or pull up like she was

before the casts came off; hopefully she will adjust soon as she is cranky

due to lack of mobility and cutting her third tooth.

My biggest concern is that except for regaining the dorsiflexion after the

release, her feet don't look any different. There is a difference between

the 2 feet. The left looks fairly normal, but I don't like how the right

foot looks. The toes point medially, the mid foot looks ok, but she keeps

rotating the outer edge under. All this was present before the second

release, and I was hoping the release and subsequent casting would correct

these differences. My gut says that things aren't as good as they should

be, but convincing that a second opinion is needed won't be easy.

has faith that Dr. Hakala knows what he is doing, and knows best. I

think part of this faith is arising from the misery she underwent to

correct her clubfeet and since Leah's treatment appears to be going so much

better than hers, things are ok. She is more of an optimist than I am (I

tend to be more pessimistic which may be clouding my judgement). I am

becoming more concerned as time goes by. I do think that Dr. Hakala is a

good doctor, and the original corrections went well, but I'm still getting

concerned. Leah has distal arthrogryposis which is complicating things.

thanks,

Rob, (bilateral cf), Leah (bilateral, 12-18-03)