Re: Re: upcoming surgery concern for Avery Lynn

[Guest guest]

Hello .

Welcome to the board. I am going to jump on the bandwagon and say you

should definitely give casting and FAB another try. There are other

parents on this board who have started over again at 14 or 15 months with

casting and their babies adjusted, and stood and walked in casts. Motor

skills should be the least amount of reason not to consider the casting

again. Besides, would you prefer your daughter to have a lifetime of

painful feet just to walk sooner or a lifetime of pain free feet and

walking at 22 months? And she may surprise you and walk at 12 months. One

can never tell. Now if she isn't sitting up at 22 months, then there

should be some concern.

Also, there may be a reason she absolutely hated the shoes. It could have

been painful for her if her feet weren't corrected all the way in the

first place, or they starting relapsing due to the sudden decrease in

hours. Not fully corrected feet can be very painful in the shoes. Your

daughter may have been trying to tell you something other than " I just

don't want them on " . (I promise I am not trying to make you feel like a

bad parent, just giving all possible scenarios). If you are positive that

wasn't the case, then I have to say, you must stick to your guns and not

remove the shoes. I know it is easier said then done when your daughter

is screaming, but would you let your daughter run into the street when a

car is coming? Some things just aren't negotiable. That is how the FAB

should be as well. Once they realize the crying gets them nowhere, they

deal, unless they are in extreme pain. I have a feeling there was

something wrong or uncomfortable with her feet, because the 23/7 was okay,

then all of the sudden........

Lastly, have you thought about seeking another opinion with another

approved Ponseti doctor? My concern is that your doctor prescribed 12

hours after the 23/7 when it should have been 18 hours. That is not the

protocol, which leads me to believe bad things about the doctor you are

seeing.

Please give the Ponseti method another try with the correct doctor. I bet

you will be surprised at the results. Also, if she hated the shoes so

much, maybe consider the s, which are more comfortable.

Hope this helps.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

[Guest guest]

Hi ,

I can't offer much advice but maybe a little persuasion to start casting over.

I worked with a gentlemen who was born with a right clubfoot, he's now 45. His

parents didn't know about the Ponseti method then and he went through many

surgeries as a child. He went on to play sports and be a very healthy active

little boy and teenager.

He says now though he has constant pain in his foot. Every morning when he gets

out of bed he says it takes awhile to loosen up his foot from all the scare

tissue. Also, he walks with a limp now because of the constant pain and

irritation. He says he knows it's because of all the scare tissue and has even

of late thought about going in and having another surgery to remove some of the

scare tissue.

I know starting over seems unbearable and the road to reduction seems like a

lifetime but I'd give it one more shot. As scary as it is time does fly by.

When she gets into her shoes again reduce slowly and not all at one; 23/7, 18/7,

16/7, 14 to12/7 that will help her adjust slowly.

Oh, when I was in the hospital I had a nurse who had a little boy born with

clubfeet, he's 8 now and she didn't know about the Ponseti method. Today she

said her 8 yr old is already in constant pain she has to massage his feet every

night before bedtime because of the pain from the many surgeries he's had. She

said he'll have several more before it's all said and done.

I also have a preemie and so far he's doing really well. We did wait until he

was 2 mo. old before treatment though because his feet were just too small

Best of luck to you and you'll be in our thoughts.

valerie ciccione ciccionechix4@...> wrote:

Hello

I am so thankful that I found this group.... I am so confused on what to do! My

husband and I do not want to do surgery but with the way that Avery is, it makes

it very hard to keep her in the shoes... like I had said in my story was that if

she was our only one I think I could of tried harder!! She did do very well with

the shoes when they were full time...she wore them about 23 hours a day and

didn't seem to mind until the day we got the OK to wear only at night... and boy

do I wish that we would of weined her off of them because now I can see why it

makes such a difference. At the time we thought....yes, we can finally get these

off during the day!! She did so good with them that I didn't think anything of

it. When she got them fitted the first time the man had told me that some kids

really fight it and when he put them on she really didn't at that time so I

thought that I had it made and she would do OK with them.

So I do know that doing surgery ISN'T a quick fix and that she may need more of

them and that it could cause her pain in her foot as she gets older so that

makes me second guess what we are to do. I really thought that I was set on

surgery but now after reading just a few responses from people on here it makes

me consider doing the casting again. I am so mad at myself for not doing it

sooner. I really think that she was so little and her foot was so tiny when we

first started this that by the time we were done with casting her foot was

really still developing. She was only like 5 pounds when we started... I don't

know if that makes a difference or not. Her foot was so tiny. I am thinking if

we do the casting now and then when she gets them off that she will be standing

and that would help the foot not turn back in because she will be using it. When

she was so tiny she didn't use it.

She is behind as it is because of being 2 months premature (she is only 15

pounds as of now at 10 months old) and I am really afraid of doing the casting

and shoes that it will delay her even more but I am certain that surgery will

also. And what if we do the casting and she wont tolerate the shoes and we have

to do surgery anyways... am I wasting time on the correction? I don't know the

answer to that. We have our appointment with the Ortho next Thursday and I guess

we will have alot of questions for her... and MAYBE do the casting. I am

thinking that I found this website for a reason and it is God's way of telling

me to continue with the casting!!!

Thank you, thank you , thank you for you listening ear!!

I do hope that I make sense to you...

Daiga Grady daiga.grady@...> wrote:

,

Welcome to the board!

I would definitely give the casting and brace a second chance.

Surgery may sound like a quick fix but as many will tell you, one

surgery will most often lead to a second surgery and in some cases, a

third surgery and beyond. Surgery also leaves scar tissue which

makes full mobility later on more difficult to achieve.

One question: Did Avery tolerate the brace well during the initial 3

month 'full-time' phase? If so, there's no reason to believe that

she won't be able to tolerate it again a second time. One thing that

I found interesting was that Avery's brace wear was reduced to 12

hours immediately after having been in the brace full-time. I know

that there are others on this list who experienced what you did with

Avery after having dropped hours so drastically. A quick remedy was

to increase the number of hours in the brace and then to drop hours

gradually over a period of time.

One of the mom's on this list recently received an email from Dr.

Ponseti in which he addressed the bracing protocol:

" After 3 months of full time brace wear, we usually gradually wean

the babies out of the brace, starting with 4 hours a day out for one

month, then 8 hours a day out. We try to have the babies wear the

brace at night and naptime for a total of 16-18 hours and once they

are walking wear it at least 14 hours. We used to recommend bracing

continue to age 3, but since we have seen some relapses, we now

recommend 3 1/2 to 4 years of age.

I.V. Ponseti, M.D. "

This is something that you may want to take into consideration if you

decide to retry the casting and brace.

If you have any questions at all, don't hesitate to ask. The members

of this group will be more than happy to help!

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/24

>

>

> Hello to all of you brave families out there...

> I just wanted to share my story....

>

> During my pregnancy I went through several ultrasounds due to

having

> twins.... at about week 20 they detected a left club foot in one of

> the babies and at about 24 weeks, they confirmed it. They also

> detected an enlarged lateral ventricle and because of the 2

findings

> they had sent us to a genetic counsler and we continued to do many

> ultrasounds tracking the ventricle (which didn't change as time

went

> on and they thought they were isolated findings... big relief for

> us). Due to all of the stress I was under with not knowing if

> baby " B " would be healthy or not and all of the appointments that I

> was balancing and also having a 3 year old (at the time) to take

> care of.... I went into labor at 31 weeks. I was able to get the

> shots to help their lungs develop and I delivered at 32 weeks.

> Delaney was born at 4lbs 16 " (with no complications !!! and Avery

> was born 3lbs 10oz and 16 " and had to be on a ventilator for 12

> hours and also on a low dose of oxygen for a couple of weeks. Avery

> was born with the left club foot. The Doctor came to check her foot

> out right away and decided to start treatment when she was released

> form the NICU (special care nursery). Getting her stabilized was

> more important. She got her first cast 4 days after she got home

and

> had a different cast on every week for 6 weeks and then had the

> tendonomy~SP. She then had a cast for 2 weeks and her foot looked

> great and she started with the " shoes " . She did great wearing them

> full time for 3 months. Then the Dr said she could do just night

> time for 12 hours from then on. Avery decided she liked her freedom

> and after 3 night of wearing them she wouldn't cooperate at ALL!!!

> She would scream an " ear piercing " scream that would wake up the

> rest of the family. (If she was the only child MAYBE I could of

kept

> her in them). The minute we took them off she stopped so we tried a

> few different things to help her but nothing seemed to help. The Dr

> changed the degree of the shoes but said she couldn't do anymore.

> The foot has started turning in and has pretty much gone back to

> where it started... she hasn't had the shoes on in months now. She

> is 9 months old and we don't feel like we have many options at this

> time. The Dr told us the options were to go through castings again

> and start over with the shoes or more than likely surgery (which

she

> really talked down on... she doesn't want to see that happen but

the

> shoes aren't an option...)Avery is very difficult to get to

> cooperate even now. She is a very light sleeper. She has been

> through sooo much that I DO NOT want to do surgery but I really am

> out of ideas. The only way I could get her to sleep with the shoes

> on was on her belly.

>

> Does anyone have any helpful information for us....??? We are going

> to see the Dr on the 28th and talking about surgery. I also notice

> that the leg with the club foot seems to be a tiny bit shorter...

> has anyone had any concerns with that before? Is it because of the

> bend and once it is corrected it catches up?? The Dr told us also

> that the heel bone doesn't " drop " until they are about 2 years

> old... is that true? Could that be why it seems shorter?

>

> Thanks for listening....

> God Bless all of us....

>

> The Ciccione's (Chicago, Il)

> Rod and

>

> Chesney 8.7.00

> Delaney 6.24.04

> Avery 6.24.04 left club foot

[Guest guest]

,

Do you mind my asking what kind of surgeries you had as a child? My son

was born with a left clubfoot that relapsed at age 2 or so...he

had ATTT surgery last year (at age 3) and now our dr is recommending

that he have the ATTT redone because the tendon seems to have slipped

and now isn't strong enough. We're hoping to avoid a second surgery by

strengthening his foot- we go back to see Dr Dietz the end of June and

will make the decision then. In the meantime we've got Jake doing lots

of exercises.

Anyways, Dr Dietz told us that people who have ATTT surgery done as a

child don't have painful feet as adults, because the surgery doesn't

affect the joint capsules?? I was wondering what kind of surgeries you

had done and if you have any insights. Also any questions we should ask

Dr Dietz?

Thanks,

Kassia

3/22/01 (Lt clubfoot, ATTT surgery April 2004)

and 11/22/02