Re: Need info!!

September 9, 2003

> Hi I am new! My son is almost eight months old. He was born with

> one club foot. He was put in a cast at 4 days old. He was in a

cast

> for four months. His Dr. is now saying that the achillis tendon

> needs to be severed. Apparently it is a minor operation. Anyone

> heard of this? Anyone have this done? I am looking for an

> alternative to surgery. Not to mention that it is risky to put

> infants under. I also have a rare disorder called Malignant

> Hypathermia (it means I am allergic to anthesia and if put under

> could die). My son has a 50% chance of having this disorder.

>

> I hope that there is someone who is more aware of the alternatives

> than I am.

>

> Thanks

> Swede89436

September 9, 2003

Hi there,

I am new TOO!

My name is . My son who's 9 mo. old was born with two club

feet. His Doctor is practicing the Ponseti method. He was put in

casts for 3 months when he was only 6 wks old. After a couple of

months his Doctor said had to have a minor surgery on his

achillis tendon. I was terrified. How could my little 3 mo. old go

through surgery like this? When the day came I was so nervous and

also horrified. The doctors took him back to the room. My husband and

I said we were going to go with him, however his doctor said it's

best we didn't. It only took 15-20 minutes. When the nurse came and

told us the procedure was done I was so releaved but also worried

about ...was he in pain, what can I do for him, etc...When I

went into the casting room seemed very relaxed. I was

surprised. The little sidation they gave him worked really well and

didn't seem to effect him at all. I went ahead and held him while

they did the casting on both legs. Because of the surgery they were

able to left his feet higher up. They placed his foot where they

needed to be and went ahead with the casting. It took no time at all

and we were on our way home, he was sound asleep. After he woke up I

gave him some Tylenol. I proceeded with the Tylenol every 4 hours for

24 hours. He seemed a little restless and irritable the next day but

that was about it. He's doing really well and he's wearing his shoes

with the bar only at night now. I hope things work out with your son.

Give it thought, but just remember they will not remember this when

they get older. I had many people tell me this. I do not know of any

other alternative. Your doctor will know best. Please keep in touch

I'd like to know the outcome.

Take care,

> Hi I am new! My son is almost eight months old. He was born with

> one club foot. He was put in a cast at 4 days old. He was in a

cast

> for four months. His Dr. is now saying that the achillis tendon

> needs to be severed. Apparently it is a minor operation. Anyone

> heard of this? Anyone have this done? I am looking for an

> alternative to surgery. Not to mention that it is risky to put

> infants under. I also have a rare disorder called Malignant

> Hypathermia (it means I am allergic to anthesia and if put under

> could die). My son has a 50% chance of having this disorder.

>

> I hope that there is someone who is more aware of the alternatives

> than I am.

>

> Thanks

> Swede89436

September 9, 2003

Hello

My son just had a tenotomy done 3 weeks ago...His Dr.

didn't give him anesthesia. He didn't even sedate him.. He

said it is to risky with an infant. He cried a lot during

the procedure(my husband stayed with him) but I don't

think it was because he was in severe pain.. He just

doesn't like being held down...It was really quick and he

was fine after..We gave him tylenol but he didn't seem to

cry to much because of pain...Over all it wasn't that bad..

I was happy with the results...Before the procedure they

put a numbing agent on his heels(cream) and then gave him a

couple of shots of novacaine.... Hope this helps.. Is your

Dr. a Ponseti Dr?

and (5/10/03)bc/f

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September 9, 2003

His Dr. is now saying that the achillis tendon

> needs to be severed. Apparently it is a minor operation. Anyone

> heard of this? Anyone have this done? I am looking for an

> alternative to surgery. Not to mention that it is risky to put

> infants under.

The heel cord is not severed, it's lengthened. Doctor's following the Ponseti

Method of treatment do this in an office-procedure, the baby is not put to sleep

for it, so the risk of " going under " is eliminated.

s.

Re: Need info!!

> Hi I am new! My son is almost eight months old. He was born with

> one club foot. He was put in a cast at 4 days old. He was in a

cast

> for four months. His Dr. is now saying that the achillis tendon

> needs to be severed. Apparently it is a minor operation. Anyone

> heard of this? Anyone have this done? I am looking for an

> alternative to surgery. Not to mention that it is risky to put

> infants under. I also have a rare disorder called Malignant

> Hypathermia (it means I am allergic to anthesia and if put under

> could die). My son has a 50% chance of having this disorder.

>

> I hope that there is someone who is more aware of the alternatives

> than I am.

>

> Thanks

> Swede89436

September 9, 2003

My daughter Rose had this done at 3 months. We were at the office for about 2

1/2 hours. We had to arrive 1 hour early and the nurse put some numbing cream

on the ankle and leave it for an hour. Then the Dr. (this sounds gross) puts a

scalpel into the baby's ankle and turns it, severing the tendon. Then the baby

wears a cast for three weeks and the tendon grows back together. Dr. Mosca

told us that in baby's under one, the tendon just grows back together, where as

if you or I had this done, we would be crippled.

The worst part is when they cut it. The numbing cream helps but it still really

hurts. They give them a shot of novocaine-like stuff right after they cut it

and that kills the pain. They can't shoot it in before the operation because

then the Dr. can't easily feel the tendon to cut it. After they gave us some

baby tylenol w/codiene and Rose took it that night and the next day. Then she

was fine. no more tears.

Dr. Mosca told us that 95% of babies have to have the tendon cut because it is

too tight and cannot be stretched. I was a little freaked out before he did

it, but it was really okay.

Robin

Number23 wrote:

His Dr. is now saying that the achillis tendon

> needs to be severed. Apparently it is a minor operation. Anyone

> heard of this? Anyone have this done? I am looking for an

> alternative to surgery. Not to mention that it is risky to put

> infants under.

The heel cord is not severed, it's lengthened. Doctor's following the Ponseti

Method of treatment do this in an office-procedure, the baby is not put to sleep

for it, so the risk of " going under " is eliminated.

s.

Re: Need info!!

> Hi I am new! My son is almost eight months old. He was born with

> one club foot. He was put in a cast at 4 days old. He was in a

cast

> for four months. His Dr. is now saying that the achillis tendon

> needs to be severed. Apparently it is a minor operation. Anyone

> heard of this? Anyone have this done? I am looking for an

> alternative to surgery. Not to mention that it is risky to put

> infants under. I also have a rare disorder called Malignant

> Hypathermia (it means I am allergic to anthesia and if put under

> could die). My son has a 50% chance of having this disorder.

>

> I hope that there is someone who is more aware of the alternatives

> than I am.

>

> Thanks

> Swede89436

September 9, 2003

had this done at 4 1/2 months. If your dr wants to put your

son under for this, try to find another dr who will do this with

local anesthetic (or none at all). It is a very fast procedure.

For , one person held his foot and I held him down. He

screamed because he hates to be held immobile. They put in the

needle to numb the area (neddle was in for maybe 30 sec). A few

minutes later the dr used the scalpel and preformed the tenotomy.

(they don't severe the tendon, but cut small strands of it to

lengthen it) Then they casted him.

Right after it was done I picked him up a cuddled him and he stopped

crying. He was asleep in his car seat minutes later. I agave him a

shot of tylenol an hour later and that was all he ever needed.

The original dr that we were seeing was not going to do this for

. I did some research and got a second opinion and went ahead

and had it done. I am sooooooooo glad that I did. His foot looks so

much better after having it done and he is a happier baby.

Jody and 9 months (left club foot)

September 10, 2003

Is your son undergoing the Ponseti Method? If so then your doctor may be

talking about a tenonomy that can be done with a local, so the child doens't

have to be put under a general. If not then I would seek out a Ponseti doc

to avoid the surgery.

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: Need info!!

>Date: Tue, 09 Sep 2003 05:01:46 -0000

>

>Hi I am new! My son is almost eight months old. He was born with

>one club foot. He was put in a cast at 4 days old. He was in a cast

>for four months. His Dr. is now saying that the achillis tendon

>needs to be severed. Apparently it is a minor operation. Anyone

>heard of this? Anyone have this done? I am looking for an

>alternative to surgery. Not to mention that it is risky to put

>infants under. I also have a rare disorder called Malignant

>Hypathermia (it means I am allergic to anthesia and if put under

>could die). My son has a 50% chance of having this disorder.

>

>I hope that there is someone who is more aware of the alternatives

>than I am.

>

>Thanks

>Swede89436

>

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September 10, 2003

Thanks so much to everyone who replied to my question. I feel a little

better about it. Yes, my Dr. is doing the Ponsetti method. I live in Nevada.

I

still instinctively feel that there is an alternative method to achilles

tenotomy. Maybe I am crazy? But, I do believe that we should listen to our

instincts. Someone suggested trying acupuncture. Has anyone here tried it to

help

with the clubfoot.

My son has a right clubfoot. I have a daughter that is six she was a preemie

baby. She was in ICN for a week. She is fine now. I so envy people who

have perfect children born to them with no problems. I hate hearing how lucky I

am that it was only clubfoot. Sure, that's easy for them to say when they had

perfectly healthy normal babies. And yes, I am greatful that they don't have

any other disorders or problems. I guess I am just airing some pent up

feelings.

I know all to well the stares and questions you get when they are in a cast

or in their shoes and bar.

Thanks for letting me vent. Well I have to go take care of my kids. Does

anyone else on this board AP.?

Thanks

Swede89436

September 10, 2003

Yes, however my DR. insists on having him put under.

September 10, 2003

Swede89436,

I'm sorry but I haven't followed all of your posts...however, I did

just read this latest one and remember feeling the same frustrations

(how much easier life would have been if CF wasn't an issue in my

life). I had to do a little venting myself and I even had a few pitty

parties HOWEVER, a couple of years from now, this will all be a

non-issue. You will be so pleased with the Ponseti treatments and will

have a sense of satisfaction through your own dedication of FAB

wearing, when your child has beautiful, healthy feet. My daughter did

ponseti castings for four weeks starting at birth and did not need a

tenotomy. She started wearing the FAB at 4 weeks old. At her 9 month

check-up, they decided the tenotomy was necessary. I remember being

terribly upset about having to leave her alone with strangers (I strive

to parent the AP way also). She was perfectly fine going into the

procedure and a bit shaken 15 minutes later when she returned. I

immediately nursed her and she was FINE within seconds!!! I have never

felt any negative problems arose from this scenerio. As a matter of

fact, I am incredibly pleased with her sense of attachment and security

at the age of 2 1/2! She still wears her FAB at night and we're all a

very happy family!

Best wishes!

Amy

On Wednesday, September 10, 2003, at 09:05 PM, lrnbfry@...

wrote:

> Thanks so much to everyone who replied to my question. I feel a little

> better about it. Yes, my Dr. is doing the Ponsetti method. I live in

> Nevada. I

> still instinctively feel that there is an alternative method to

> achilles

> tenotomy. Maybe I am crazy? But, I do believe that we should listen

> to our

> instincts. Someone suggested trying acupuncture. Has anyone here

> tried it to help

> with the clubfoot.

>

> My son has a right clubfoot. I have a daughter that is six she was a

> preemie

> baby. She was in ICN for a week. She is fine now. I so envy people

> who

> have perfect children born to them with no problems. I hate hearing

> how lucky I

> am that it was only clubfoot. Sure, that's easy for them to say when

> they had

> perfectly healthy normal babies. And yes, I am greatful that they

> don't have

> any other disorders or problems. I guess I am just airing some pent up

> feelings.

>

> I know all to well the stares and questions you get when they are in a

> cast

> or in their shoes and bar.

>

> Thanks for letting me vent. Well I have to go take care of my kids.

> Does

> anyone else on this board AP.?

>

> Thanks

> Swede89436

>

September 10, 2003

There is one other option currently being tested, I think to replace the

tenotomy. It is being used in British Columbia, Canada by a femal Dr. I think

she is on the list of Dr. P's. She is useing Botox to relax the muscule. I don't

know much about it. I do remember reading an article about it when I was

searching for info a year ago when my daughter was born. I asked at the Shriners

Hospital way back then if they used such method. They didn't. They stear away

from " experimental " stuff, unless they themselves are doing the experiments. I

asked Dr. Dobbs at St. Louis if he knew about it too. He had heard of the tests

but said there was no conformation yet if it worked as well as hoped. Plus they

are still working on how small or large a dose to inject into such a small

person. So I don't know that it is a safe option right yet. Best to stick with

what works right now.

Plus some Dr.s are doing the Tenotomy with only a very small incision, like a

needle sized one and others use a larger cut, for a better view I guess. Check

which your Dr. prefers.

and Shalom

lrnbfry@... wrote:

Thanks so much to everyone who replied to my question. I feel a little

better about it. Yes, my Dr. is doing the Ponsetti method. I live in Nevada.

I

still instinctively feel that there is an alternative method to achilles

tenotomy. Maybe I am crazy? But, I do believe that we should listen to our

instincts. Someone suggested trying acupuncture. Has anyone here tried it to

help

with the clubfoot.

My son has a right clubfoot. I have a daughter that is six she was a preemie

baby. She was in ICN for a week. She is fine now. I so envy people who

have perfect children born to them with no problems. I hate hearing how lucky I

am that it was only clubfoot. Sure, that's easy for them to say when they had

perfectly healthy normal babies. And yes, I am greatful that they don't have

any other disorders or problems. I guess I am just airing some pent up

feelings.

I know all to well the stares and questions you get when they are in a cast

or in their shoes and bar.

Thanks for letting me vent. Well I have to go take care of my kids. Does

anyone else on this board AP.?

Thanks

Swede89436

September 11, 2003

Hello Swede,

There are now at least 3 Ponseti method parents on the internet that

I know of in the Las Vegas, Nevada area. Do you also live in that

part of Nevada.

There are some alternatives to the tenotomy such as the use of botox

to paralize the calf muscle while the achilles tendon is stretched

through the use of additional castings. But that method is

currently only done by one medical group in Canada and only for the

past 2 years and there are no long term analysis of the outcomes of

that modification of the method.

Another alternative is to use physiotherapy methods, but they

significantly increase the risk of needing to use a posterior

release type of surgery. There are also no long term outcome

studies on this type of treatment yet.

The tenotomy as done at the U of Iowa has been shown to work well in

25-42 year long term outcome studies.

and (3-17-99)

> Thanks so much to everyone who replied to my question. I feel a

little

> better about it. Yes, my Dr. is doing the Ponsetti method. I

live in Nevada. I

> still instinctively feel that there is an alternative method to

achilles

> tenotomy. Maybe I am crazy? But, I do believe that we should

listen to our

> instincts. Someone suggested trying acupuncture. Has anyone here

tried it to help

> with the clubfoot.

>

> My son has a right clubfoot. I have a daughter that is six she

was a preemie

> baby. She was in ICN for a week. She is fine now. I so envy

people who

> have perfect children born to them with no problems. I hate

hearing how lucky I

> am that it was only clubfoot. Sure, that's easy for them to say

when they had

> perfectly healthy normal babies. And yes, I am greatful that they

don't have

> any other disorders or problems. I guess I am just airing some

pent up

> feelings.

>

> I know all to well the stares and questions you get when they are

in a cast

> or in their shoes and bar.

>

> Thanks for letting me vent. Well I have to go take care of my

kids. Does

> anyone else on this board AP.?

>

> Thanks

> Swede89436

>

September 11, 2003

Swede,

I know how you feel about the tenotomy. I felt so helpless just knowing they

were going to cut my little girl's ankle and I couldn't do anything about it.

However, I am just so thrilled that, the good Lord willing, she won't have to

have major surgery. We thought that was our only option and were so excited

when Dr. Mosca said no surgery, other than the tenotomy.

I know it is scary, but it is such a short procedure and then it is over and

they don't seem to have any lasting effects. Rose more upset the first time she

had her shots than when they did the tenotomy.

As far as people staring and making comments, I guess we are here to educate

people. However, I opted out whenever possible and I put Rose in footed

sleepers to conceal the cast. There was lots less questions and stares. I get

lots of questions about the bar, but they are always very polite.

Best of luck,

Robin & Rose

lrnbfry@... wrote:

Thanks so much to everyone who replied to my question. I feel a little

better about it. Yes, my Dr. is doing the Ponsetti method. I live in Nevada.

I

still instinctively feel that there is an alternative method to achilles

tenotomy. Maybe I am crazy? But, I do believe that we should listen to our

instincts. Someone suggested trying acupuncture. Has anyone here tried it to

help

with the clubfoot.

My son has a right clubfoot. I have a daughter that is six she was a preemie

baby. She was in ICN for a week. She is fine now. I so envy people who

have perfect children born to them with no problems. I hate hearing how lucky I

am that it was only clubfoot. Sure, that's easy for them to say when they had

perfectly healthy normal babies. And yes, I am greatful that they don't have

any other disorders or problems. I guess I am just airing some pent up

feelings.

I know all to well the stares and questions you get when they are in a cast

or in their shoes and bar.

Thanks for letting me vent. Well I have to go take care of my kids. Does

anyone else on this board AP.?

Thanks

Swede89436

September 11, 2003

I'm very attached also, my boy continued to sleep wtih me till just a few months

ago when he wanted to use his own bed more often. My dh says he's a Momma's

Boy. That's OK. But talkign about " life would be simpler with out the

CF " brougt back memories. With my boy it took me two years to find Ponseti, so

it was this horrible two years of casts, braces, physical therapy, pain, guilt,

it really ran the gauntlet almost daily. Then some time after Ponseti fixed him

up, the surgeries were over, the casts were over, the braces were over - it

dawned on me one day out of the blue, " Wow, it's OVER! My life isn't revolving

around his foot-care anymore! " We were living a normal life with a

normal-acting kid who was free to do normal kid things. I don't think I

realized how wrapped up I was in his care, how much it had became a Way Of

Life. Tylanol or Motrin (or a 2 hour interval between using both) were his bed

time snacks for two years, ya know? My relationship with my boy really

changed, but I think it's a good change, no better or worse, but more positive

because we can do so much more together now that his legs/feet are not concerns.

I think it made me a better, stronger parent though, considering I was a 1st

time parent at the time. I had to stay extremely focused.