Re: WE ARE ON CAST #1 :)

[Guest guest]

Bengi has a tenotomy done in Janury 2001 in Iowa with

Dr.Ponseti and his crew of people. We lived in Ohio at

that time (now in Georgia) We drove to Iowa and from

Iowa . Bengi did good with the tenotomy. We had him in

his infant carrier and Dr.Ponseti gave us a towel to

prop his foot up with. As far as the procdure went we

were in the room just because I wasn's about to leave

Bengi there alone. We gave him Tylenol before the

procedure and they gave him something to make him

sleepy but didn't take affect till 45 minutes after

the process was actually scheduled. As for the ride

home it was around 10 to 12 hours and we just gave him

Tylenol on a regular basis to help the pain and

discomfort. When you put your little one to bed trying

propping the foot/ feet with a pillow. That helped

Bengi a lot. I hope this helps. Let me know if you

have any questions.

Ruth Snare ( bengi-9/20/2000)

ON DBB 12 hours a day

4 Ponseti casts, cast free since 1/29/2000

__________________________________________________

[Guest guest]

When you say Dr. Colburn said Sierra's foot is the worst he's ever seen,

did he give you a reason why he thought this? What treatment (if any)

did she have before seeing Dr. Colburn?

My son Jakob had his tenotomies in March 1998 and had no problems with

the procedure at all. We didn't give Jakob the tylenol before the

tenotomy since we weren't positive that it would be done that morning

and it didn't seem to change our outcome. I do know his heels were

somewhat tender the day he had the tenotomies, but after that he was

pretty much back to normal.

lynn_love81@... wrote:

> On Friday July 13 we went to see Dr. Colburn at the last minute

> (Clara called me on Thursday night). Well we went and he said that

> her foot is the worst that he has ever seen and doesn't know how

> things are going to go. We talked about the Tenonomy (sp?) and it

> seems really scary to me that they do it all by feel! I am worried

> what if he cuts the wrong tendon? Or cuts too much? Has everbody

> had good results from this or any bad? Little Sierra is not happy

> with the big plaster cast on because she cannot lift up her leg at

> all, its too heavy for her little leg. And she cannot fall asleep

> without being in her swing but it won't go because her leg is too

> heavy Poor baby! Dr. Colburn says that we have to return every

> week (it is 215 miles from my home) so it takes about 3 1/2 hours for

> me and it is hard on Sierra. We had to stop four extra times on the

> way home because she did not like the cast. Please email me if you

> have had the tenonomy done on your child and how well they did during

> and after. Thanks

[Guest guest]

Lynn?,

We are glad that you have been able to get to see Dr. Colburn. Even

though your child is now 5 1/2 months old, we hope that he will be

able to get the Ponseti method to work. There also also a number of

other Ponseti method parents in or near the Bay Area.

Many of those on this site have had their children treated with the

Ponseti method over the past few years. There are about 110 parents

that I am aware of on the internet since the summer of 1999 who have

used the Ponseti method. Most of our children have had a tenotomy.

I think that all of us were concerned about it beforehand, but it is

really not a big deal and is done in about 5-10 minutes while the

child is awake.

Often a topical anesthetic is first applied to the back of the heel.

The incision is so small that no stitches are needed and then they

put the feet into a final 3 week cast. For our , we can not

see the location or a scar where his tenotomy was done.

In the 1999 Ponseti method Video " A 43 Year Case Study " , Dr. Ponseti

says concerning the tenotomy; " This minor surgery in not invasive or

harmful. In an infant this tendon regenerates to the proper length

in 2 to 3 weeks. No problems have ever arisen from such

tenotomy .... When compared to other techniques for correction of the

deformity, our manipulation, casting and splinting procedure has

never resulted in any disability for the patients. "

" I [Dr. Ponseti] have treated over 1,000 infants in the same manner

and for nearly every one treated from birth, there has been no

difference in performance or function when compared to a population

born with normal feet "

Please ask any questions that you may have and also look through the

reference information in the sites files and bookmarks sections at

http://groups.yahoo.com/group/nosurgery4clubfoot We all hope that

things go as well as possible.

and (3-17-99)

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Egbert.html

> On Friday July 13 we went to see Dr. Colburn at the last minute

> (Clara called me on Thursday night). Well we went and he said that

> her foot is the worst that he has ever seen and doesn't know how

> things are going to go. We talked about the Tenonomy (sp?) and it

> seems really scary to me that they do it all by feel! I am worried

> what if he cuts the wrong tendon? Or cuts too much? Has everbody

> had good results from this or any bad? Little Sierra is not happy

> with the big plaster cast on because she cannot lift up her leg at

> all, its too heavy for her little leg. And she cannot fall asleep

> without being in her swing but it won't go because her leg is too

> heavy Poor baby! Dr. Colburn says that we have to return every

> week (it is 215 miles from my home) so it takes about 3 1/2 hours

for

> me and it is hard on Sierra. We had to stop four extra times on

the

> way home because she did not like the cast. Please email me if you

> have had the tenonomy done on your child and how well they did

during

> and after. Thanks

[Guest guest]

> On Friday July 13 we went to see Dr. Colburn at the last minute

> (Clara called me on Thursday night). Well we went and he said that

> her foot is the worst that he has ever seen and doesn't know how

> things are going to go. We talked about the Tenonomy (sp?) and it

> seems really scary to me that they do it all by feel! I am worried

> what if he cuts the wrong tendon? Or cuts too much? Has everbody

> had good results from this or any bad?

The tenotomy is a relatively safe proceedure. They know which tendon

to cut because they flex the foot and the achilles tendon (which is

the 'heel cord') pops out and is visible. Just flex your own foot by

pointing your toes towards your head and bending your ankle. You see

the achilles tendon at the back of your ankle. While the achilles is

not as

visible in a baby, it it still discernable. After they insert the

scalpel, they cut the cord from the back side of the tendon to the

front (which is to say, they cut first from the side closest to the

toes then towards the backside of the foot). They

know when they have cut completely through because they can feel the

complete release (imagine cutting a taught string with a pair of

scissors, you can 'feel' when you have cut completely through) also,

they can tell by the increased dorsiflexion of the foot (although

that is not necessarily the accurate measure of a completely cut

tendon) I have heard of bad results from the tenotomy. Typically it

has been when a doctor is inexperienced at performing one. It should

only take a doctor 3 or so times to become properly accustomed to the

feel of the proceedure. In Dr. Colburn's case, he observed Dr.

Ponseti perform

them. Then, when it was time for Dr. C to do his first, he choose to

use a general anesthetic on the child so that the situation was more

controlled. I believe he used general on the first 3 or so patients,

but I think he now just uses a local, but don't quote me on that. I

think that Dr. C has now treated around 30 children with the Ponseti

technique. You would have to ask him how many actuall tenotomies he

has done as I am not sure.

Little Sierra is not happy

> with the big plaster cast on because she cannot lift up her leg at

> all, its too heavy for her little leg.

I'm sure this is normal. My daughter started out with the heavier

Ponseti casts at 1 month. Her previous 5 casts were 'just' above the

knee and much smaller in size. She ended up with VERY strong stomach

muscles because it didn't take her long to adjust to the weight

difference. I don't remember if Sierra has been cast free for some

time or just been in lighter casts. It may then take her a little

more getting used to, but I think she will be able to compensate.

And she cannot fall asleep

> without being in her swing but it won't go because her leg is too

> heavy Poor baby!

Hmm, don't know if I have any really good suggestions for this? I

don't mean to sound trite, but do you have fresh batteries in the

swing? I didn't have this problem with Annika, although she was in

the Ponseti casts at a younger (lighter) age.

Dr. Colburn says that we have to return every

> week (it is 215 miles from my home) so it takes about 3 1/2 hours

for

> me and it is hard on Sierra. We had to stop four extra times on

the

> way home because she did not like the cast.

When Annika would get her casts put on, we would always give her

either baby tylenol or baby motrin a 1/2 hour before hand. She

always seemed to end up sleeping for awhile after that. After 4

hours had passed from her last dose of medicine, we would medicate

her again with the other medicine. (alternating between motrin and

tylenol) If you give her a dose of motrin at the appointment, then 4

hours later, you can give her tylenol without worry of her overdosing

on either one. We would do the alternating of tylenol/motrin for a

24 hour period (or so) after a casting. Just make sure you check the

proper dosing for Sierra's weight/age. This might help with your

trip back home and Sierra's comfort. Also, try proping a small

rolled up hand towel or receiving blanket under her legs when she's

in the car seat AND when you lay her down to sleep. You might also

try doing this in the swing...although if the swing won't move, I

don't know if this will help much. Would she fall asleep if you

rocked her in her car seat? What about if you pushed her in a

stroller?

Please email me if you

> have had the tenonomy done on your child and how well they did

during

> and after.

Annika had her tenotomy done when she was just under 2 months old. I

was not present in the room when they did the tenotomy. When I did

come in the room, they were just applying the second cast, and she

was FAST asleep. They had given her a local anesthetic which they

said would wear off in a couple of hours. So, we medicated her 1

hour before the anesthetic was scheduled to wear off. She did

relatively well. We didn't experience any really fussy episodes or

any crying other than a wet diaper or hunger. We 'may' have

medicated her for 48 hours with tylenol/motrin after the tenotomy.

I admire you for making that trip to see Dr. Colburn. I know your

going through some pretty tough times and your making this trip is a

big inspiration to me. If at any time you would like to meet while

you're up here, please, send me an email and I'll gladly give you my

number or you give me yours and we could arrange to meet. You'd be

able to meet Annika too and see how her feet look.

I am sorry to hear that Dr. Colburn felt Sierra's feet were so

severe. But, I have heard Dr. Ponseti say before, that sometimes

even feet that appear quite severe have corrected suprisingly quick

with this method. I don't know how Sierra's feet will respond, but I

do

know that Dr. Colburn has had great results with his patients and has

an excellent understanding of the Ponseti method.

Congratulations to you for taking the first step in going to see Dr.

Colburn. Sometimes that first step IS the hardest one to make.

Hopefully, it will get easier from here on out.

Best of luck to you and Sierra.

Lori

[Guest guest]

We had to fly from Las Vegas, NV to Albuqueque, NM for Beka to se Dr.

Brown. Our day started at 3am & we got home by 9pm & didn't get

settle until 10-11. When Beka had her tenton cut we knew to bring

the Tylenol. We gave her a dose an hr after the procedure & when we

got home. everthing was actully pretty easy.. If I were to do it

agian I'd give her the tylenol right before they cut it & 4 hrs later

just to keep her from hurting.

Hope all works out!

[Guest guest]

Dear Lynn,

I'm so glad to read that you are seeing Dr. Colburn. He is treating my son

Jordan's bilateral clubfeet. He is a wonderful man, and an outstanding

doctor; you are very lucky that so skilled a practitioner of the Ponseti

Method is available to you to correct Sierra's difficult feet.

When it was time for Jordan's tenotomy, I asked if I could breastfeed him

during the procedure. Dr. Colburn agreed to give it a go. Jordan received

first a topically applied anesthetic; then,once that took effect, a shot

into each Achilles area. He cried while the tenotomy was being performed;

probably more from having his feet held down than from pain. As soon as the

doctors began to cast his feet, he began to nurse. He was asleep before

they had finished both casts. Dr. Colburn only uses a general anesthetic if

the baby flails and kicks alot; or if the parents prefer. I gave Jordan

Tylenol about one hour before the procedure, and every four hours for 8

hours on the ride home. I should have alternated Tylenol and Motrin; at the

time I didn't know too much could cause liver damage. He was not especially

restless, etc. afterward. If you take her in alittle bit hungry and give

her a bottle or nurse her, she'll be pleasantly distracted.

Jordan and I drive 4 1/2 hours one way to see Dr. Colburn. It took me

awhile to hit on some techniques that made the trip alittle easier on

Jordan. I learned that no matter how many times I stopped when he cried,

that he wasn't comforted and he would continue to cry. He was just plain

unhappy to be in the car. Someone suggested I add an activity bar to the

handle of his car seat, Dah. That helped alot. Whenever I could, I'd leave

around 6 p.m. so that he'd fall asleep by 7:30 and sleep the bulk of the

trip. Of course that requires staying over night near Pleasanton; which I

could do because my husband rents a room in the Bay Area during the week.

The next day we'd try to break up the trip home by sightseeing a bit.

Or mornings where we had to be up there, I wouldn't let him nap until we

were on the road. You'll figure out stuff like that; it comes with LOTS of

practice.

As far as worrying about the tenotomy; personally I have never batted an eye

with regard to any of Jordan's Ponseti treatment. You see, our original

ortho. surgeon in San failed to correct his feet with three months of

casts, and had announced he would have massive reconstructive surgery when

he was 10 months. After repeated requests to explain the surgery, he

dragged out his textbook and showed us the diagrams of the surgery he

intended to perform. I took one look at the back of the foot opened from

big to little toe, and the removal and " Z " cutting of major tendons, the

cutting of joint capsules, etc, and burst into tears. I had had surgery on

both of my knees when I was 12 and 13, and have suffered with my knees ever

after. So I knew that many times surgery is a much bigger deal to recover

from than the doctors ever

let on, and this surgery for my tiny baby was the biggest, most invasive,

and most horrifying I could ever imagine.

Good luck with Sierra's treatments. It's hard to drive so far but it's well

worth it to deprive your child of massive surgery that can and has caused

early onset of arthritis, repeat surgery, painful feet before they are six

years old, etc. Sierra is very lucky you are willing to make these

sacrifices for her. But then, you only want the best for your baby, and

thankfully, you've got it!

If you have any other questions please call me at and we can

talk!

Eddie and Jordan (4-9-00, bilateral)

3 mos. short casts

3 Ponseti casts & tenotomy

Now in FAB 12 hours @ night

Walking at 14 mos.

WE ARE ON CAST #1

On Friday July 13 we went to see Dr. Colburn at the last minute

(Clara called me on Thursday night). Well we went and he said that

her foot is the worst that he has ever seen and doesn't know how

things are going to go. We talked about the Tenonomy (sp?) and it

seems really scary to me that they do it all by feel! I am worried

what if he cuts the wrong tendon? Or cuts too much? Has everbody

had good results from this or any bad? Little Sierra is not happy

with the big plaster cast on because she cannot lift up her leg at

all, its too heavy for her little leg. And she cannot fall asleep

without being in her swing but it won't go because her leg is too

heavy Poor baby! Dr. Colburn says that we have to return every

week (it is 215 miles from my home) so it takes about 3 1/2 hours for

me and it is hard on Sierra. We had to stop four extra times on the

way home because she did not like the cast. Please email me if you

have had the tenonomy done on your child and how well they did during

and after. Thanks

[Guest guest]

Getting used to the casts, especially the first cast, was pretty

traumatic for my daughter. The first day and into the afternoon of the

second day were awful, and then, suddenly, she'd forget about it.

Olivia, also had the tenotomy. I was also pretty worried about it, but

it wasn't that bad. Definitely don't watch! Give your baby some infant

tylenol (check with doc!) before and that night and everything should

be ok. I didn't know I was allowed to give the tylenol, so Olivia just

dealt with it. What you are going through is pretty tough, but almost

more tough on you than on your baby. Just know that you are doing the

right thing, the best thing, and it will be over before you know it!

Olivia is into the shoes and her time in casts is almost forgotten

now.

Good luck and ((((hugs))))

[Guest guest]

Lynn,

I'm so glad little Sierra has been seen and she is is under Dr.

Ponseti's treatment already

Just a quick note about my experience, my son had the tenotomy done

when his was 6 months 9 days old and thanks God all I have to say is

it couldn't go better.

It takes us about 3 hours driving to get to Iowa so what we did was

to get there the night before the tenotomy was scheduled and stayed

there until the day after the tenotomy was done in the afternoon. I

just didn't want to take my baby for 3 hours drive the same day the

tenotomy took place, and to avoid taking off too many days at work,

we scheduled it to be done on a Friday.

Like other parents have done it, we gave him Tylenol before. I was

present during the procedure; I knew my baby would feel more

comfortable with my being with him. The procedure went fast, but I

have to say my baby DID CRY during it. They said it's not that

painful, but I don't know if he cried so much because of all the

strangers around him or because of pain.... I just encouraged myself

thinking I was doing the right thing for his foot.

I also took him to the procedure a little bit hungry, not VERY hungry

and give him his bottle when they where putting the cast (this always

worked great for us, to feed him during the cast application), few

hours later he was all smiles lifting his leg and kicking hard.

That night he slept sound as he always does.

I hope everything goes great with little Sierra,

Andreina & Simon Andres (10/04/01 Unilateral Clubfoot)

> On Friday July 13 we went to see Dr. Colburn at the last minute

> (Clara called me on Thursday night). Well we went and he said that

> her foot is the worst that he has ever seen and doesn't know how

> things are going to go. We talked about the Tenonomy (sp?) and it

> seems really scary to me that they do it all by feel! I am worried

> what if he cuts the wrong tendon? Or cuts too much? Has everbody

> had good results from this or any bad? Little Sierra is not happy

> with the big plaster cast on because she cannot lift up her leg at

> all, its too heavy for her little leg. And she cannot fall asleep

> without being in her swing but it won't go because her leg is too

> heavy Poor baby! Dr. Colburn says that we have to return every

> week (it is 215 miles from my home) so it takes about 3 1/2 hours

for

> me and it is hard on Sierra. We had to stop four extra times on

the

> way home because she did not like the cast. Please email me if you

> have had the tenonomy done on your child and how well they did

during

> and after. Thanks

[Guest guest]

Just thought I'd give you one more response of support.

We switched to Dr. Ponseti when my daughter, was 4 months old.

She had a tenotomy when she was almost 5 months old. We didn't stay

in the room, but left a bottle for the doctors to feed to her. They

called us back into the room 10-15 minutes after we left and she was

happily eating away and already had the cast drying on her leg. We

didn't hear her cry except when we left the room but she was quiet

before we got down the hall-presumably because they started to feed

her. I think we gave her one dose of tylenol that morning before the

procedure as a precaution, but didn't give her any after that. She

never fussed. It's been 11 months since her procedure, there's only

a tiny spot on her ankle that looks like a small bugbite perhaps. I

don't feel any knots or bumps there.

I know what you mean about the long drives. We drove 8.5 hours one

way to the Iowa appointments and did it four weekends in a row for

her Monday morning appts. Hang in there!

I hope Sierra's foot responds well to the casting. I agree with the

others about propping up the casts with blankets and that her muscles

will build up over the next few days and pretty soon she'll be

whacking you with that lethal weapon! =) Be forewarned! Feel free

to post any questions or concerns and we'll help you the best we

can. Here's the address to my website where there's a list of

hints/tips and faqs.

http://ponseticlubfoot.homestead.com/index.html

Regards,

& 3-16-00

[Guest guest]

Hi there,

I'm sorry, I have'nt been able to read all the posts yet. My daughter

has been so sick with flu that I just have'nt had time.

I hope I don't repeat what has been said too much but I just wanted to try

and put your mind to ease a little.

was born with bilateral clubfoot and she too did not like being casted

a whole lot. We had below the knee casts for the first three months and then

switched to Dr. Ponseti and had the full leg casts. She had huge ones

because by the time we saw Dr. Ponseti she was already 5 months old. I

did'nt know how on earth I was going to ever carry her around and to top it

off, she was a chubby, big girl at that time. She did indeed adapt to the

casts and eventually it really became part of our normal day life. Somehow

they just find a comfortable way (each baby differently) to move and sleep,

etc.

As for the tenotomy...........I was very nervous about the same things. What

if they missed or nicked something too much, or too little or what if she

moved? All those feelings are very normal and I'm sure every parent who has

had to have thier baby go through that worried about the same things. You

are going to a very good doctor, trained VERY well in the Ponseti method. If

you're baby needs the tenotomy and I believe most babies using this method

do than you should make your concerns known to Dr. Colburn so that he can

explain exactly what goes on and help you feel more comfortable with it.

had the tenotomy on each foot, the whole procedure lasted 15 minutes

tops and that included them putting her new casts on. It was like a shot in

each ankle (although she had a local to each foot beforhand because she was

so much older) and then they set her feet where they wanted them to be and

casted her. She was given a bottle while the procedure was done and the mom

in the room next to 's could'nt believe she had just had it done

because she said she hardly cried at all, just for a second. (Kind of like

for an immunization)

is now 17 months old and doing beautifully! Her feet are perfect and

she walks (assisted) and cruises and has no problems with them. She has no

scars either on her feet like surgery would have left, just a little pin

mark scar if you really look for it where the tenotomies where done.

Hope this helps some!

Holly and (bilateral clubfeet, Born: Feb. 11, 2001, Moderately severe)

WE ARE ON CAST #1

>On Friday July 13 we went to see Dr. Colburn at the last minute

>(Clara called me on Thursday night). Well we went and he said that

>her foot is the worst that he has ever seen and doesn't know how

>things are going to go. We talked about the Tenonomy (sp?) and it

>seems really scary to me that they do it all by feel! I am worried

>what if he cuts the wrong tendon? Or cuts too much? Has everbody

>had good results from this or any bad? Little Sierra is not happy

>with the big plaster cast on because she cannot lift up her leg at

>all, its too heavy for her little leg. And she cannot fall asleep

>without being in her swing but it won't go because her leg is too

>heavy Poor baby! Dr. Colburn says that we have to return every

>week (it is 215 miles from my home) so it takes about 3 1/2 hours for

>me and it is hard on Sierra. We had to stop four extra times on the

>way home because she did not like the cast. Please email me if you

>have had the tenonomy done on your child and how well they did during

>and after. Thanks

>

>

>

[Guest guest]

Lynn,

I forgot to mention we are from Michigan. We drove 8-9 hours each way to

Iowa once a week for 6 weeks with our then 5 month old and 3 year old. The

first couple of trips were hard, especially I have to say with the 3 year

old, after that, the girls got pretty used to it. We always rolled a towel

up for and put it under her casts to let them dry so as not to make

any indentations that Dr. Ponseti had not himself put there (very

important!) We made a lot of stops and lots of bottles! It was indeed all

VERY worth it!

Best of luck to you all!

Holly and

WE ARE ON CAST #1

>

>

>>On Friday July 13 we went to see Dr. Colburn at the last minute

>>(Clara called me on Thursday night). Well we went and he said that

>>her foot is the worst that he has ever seen and doesn't know how

>>things are going to go. We talked about the Tenonomy (sp?) and it

>>seems really scary to me that they do it all by feel! I am worried

>>what if he cuts the wrong tendon? Or cuts too much? Has everbody

>>had good results from this or any bad? Little Sierra is not happy

>>with the big plaster cast on because she cannot lift up her leg at

>>all, its too heavy for her little leg. And she cannot fall asleep

>>without being in her swing but it won't go because her leg is too

>>heavy Poor baby! Dr. Colburn says that we have to return every

>>week (it is 215 miles from my home) so it takes about 3 1/2 hours for

>>me and it is hard on Sierra. We had to stop four extra times on the

>>way home because she did not like the cast. Please email me if you

>>have had the tenonomy done on your child and how well they did during

>>and after. Thanks

>>

>>

>>

[Guest guest]

Lynn

I know I am a little late to respond, but since we are also a Dr. Colburn

patient I thought I'd throw our support in too!

Our son had bilateral Clubfeet (also severe). We are from San

Diego and made the trip seven weeks in a row. It was a wild time in our

lives. The packing unpacking etc. The best part of the ordeal was knowing

that our son was receiving excellent care. Dr. Colburn is an outstanding

doctor. His care was above our expectations!

did have a Tenotomy. The procedure went well. did cry,

but there was no question in my mind that Dr. Colburn knew what he was doing.

It was over quickly and slept most of the day. I did give him

alternating Motrin and Tylenol. We planned to stay in town the weekend to

give time to get adjusted before making the trip home (we have family

in the area to stay with).

I know when our son was diagnosed with clubfeet I was very frustrated

with the information I was receiving until I found Dr. Colburn/Ponseti

method. Once we were in his care I just knew that the Ponseti method was

right for us and so was Dr. Colburn! is now six months old and his

feet are beautiful. I am sure that Dr. Colburn can do the same for your

Sierra.

Good Luck

Tonya and

San Diego, CA

Bilateral Clubfeet