Anyone using Ponseti method for correction?

Susi - posted on 11/15/2012

Hi everyone my son born April 2012 is in his boots and bar for night only, I was just wondering if there was any exercises I should be doing with him through the day as I haven't been told to do anything.



He prefers to stand too and didn't know if this should be discouraged. He is 7mths old and very forward.

Sandra - posted on 11/08/2012

I'm using it right now! But my son hates it he cries and I can't do anything about. He had 4 casts and the ponseti brace with the bar for 23hours for 3 months and now nights and naps I am told he has to wear them for 6 years I can't put him through all that its so stressful

Luis - posted on 08/29/2012

Hi there, I'm a dad but ran across your forum and was compelled to reply. My son was born in Feb 2009 with severe bilateral clubbed feet. I had it as well when I was little so I was determined to get him the very best care available as soon as possible. He started the Ponseti method within 2 weeks of being born. He went through all the standard steps, casts, recasts, more casts, tendons clipped at 4 months, recast, brace all the time for two years then brace only at night. He is 3 and a half and has had amazing results, His feet are beautiful, straight and he never complains of any pain in his feet. He was supposed to wear his braces at night until he turns 4 but the dr told us we could do it 2 months earlier and give him total freedom for Christmas. Even though it's been tough, we have been very good about making him wear his brace at night 99% of the time. The one thing that always worried me was how he can sleep so twisted with his legs twisted and one foot almost backwards in the brace... It would make me uncomfortable to watch but the doctors always said that their bones and joints are very flexible at this age and as long as we were persistent with the braces, and he did not complain about any foot, leg or knee pain, that he was OK. I thank GOD that everything has worked out so well so far. His before an after pictures are nothing short of a miracle. For all of the parents out there going through this and feeling sorry for your kids because they have to wear the brace at this young age, DON'T GIVE UP. They will probably never even remember that they had to wear it so much. Stick with it because the last thing you want is a relapse when they are older because that will hurt them a lot more and they will remember that. Don't give up. Follow the Ponseti method religiously and do it as long as possible as much as possible. Your kids will thank you later.

Nellasteyn - posted on 05/25/2012

my son was born 2009 with a left club foot. he had casts for 8 weeks and heel cord surgery. he wear mitchell boots for a year day and night and another year just at night. then the docter said it isnt neccesiry any more! but he is 3 now and had a relapse> he must start wearing cast again now heel tendon must be lengthen an boots again so I will recommend wearing the boots as long as possible! i know you want to stop as soon as possible but I think its best to wear the boots till age 4 at least!!

his foot doesnt look bad people doesnt even notice but on x-rays you can see the problem!!
he is running, jumping,normal 3 year old with no pain or problem!! (thank God everyday) but futher procedure to prevent furher prolapse!!

Nelleke

Jeneane - posted on 06/08/2010

my Daughter had a very mild form of club foot so the bars were no big deal, I on the other had had club foot and was treated by a dr. that studied under Ponsetti (God rest his wonderful soul).. I always wonder if I would not be having all the ankle and leg problems that I have if I had the bars and such on longer, but when I had it done it was still in it's toddlerhood, although that's the only thing I have wrong with my feet.. so for all those that doubt it, do it..Make sure your doc is a trained doc in the Ponsetti Method, other wise you won't get the results that you were looking for.

Ilse - posted on 03/09/2010

Madison was born in November 2006 and had her first casting 10 hours later. Three months Ponseti casting, tenotamy, more casting and then shoes (with bars) and later at age 1 without bars.... but still the shoes.... 24hours, 12hours you name it....

Our life was hell. she would not sleep, eat or move when she had the casts/shoes on and we left the Ponseti way of doing things....

I was worried at first BUT today i could not be happier - the non-ponseti way sorted out in 3months what Ponseti could not fix in 2 years....

... and the sad thing is that I know now that had I not followed Ponseti to start off with (the so-called non invasive-way) then Madison's foot would have been fixed by age 6 months.... and we would not sit with a child that is still suffering from stress about the doctors visits and being hurt.

I think the question we need to ask is: non-invasive surgery and 4 - 6 yours of tying your child up or invasive surgery and getting to the bottom of the problem in a few month....

My personal opinion is: NO on Ponseti... get the problem fixed and quickly! but that is just my opinion....

April - posted on 01/27/2010

Ok so my son was treated in MD as well where he was born with clubfoot. EVERY dr who treats with the Ponsetti method will tell you 4 years, some may say 4 1/2. It takes that long for everything to develop properly, it is worth it to avoid relapse. I sure hope you are seeing Dr. Herzenberg at Sinai. Him and his staff are the best at this method, they really are! My son is a great success story of theirs!

Erin - posted on 12/30/2009

Quoting Billie:

If you are seeing Dr Herzenberg stick with him and his advice. He is amazing! If you are not using Dr H consult with him when you get a chance.

I live in San Antonio, TX and my son is treated by Dr. Lund in Dallas, TX. Jack will also be wearing the boots and bar until he is 4. Seems like a long time and I know it won't always be easy but the results will be worth it. At age 2 the chance of a clubfoot relapse increases. That is why many ponsetti trained doctors are recommending the wear through 4 years.

My son was born with LCF and also a dislocated patella. We've been seeing Dr. H since October for his knee. He went through surgery in February and now we are back in Baltimore for 6 weeks of physical therapy. My son just got his cast off today! and starts PT tomorrow.

My daughter was born 9/20/2003 with severe bilateral clubfoot.  Our local dr said it was one of the most severe, if not the most severe, of all clubfoot patients he's seen. We followed the Ponseti method, even making a couple visits to Dr Ponseti while back home in Iowa for a visit.  She was 2 when she saw him, we were very diligent with the shoes and bar, but her feet relapsed over and over.  She had multiple achilles tenotomies and an ATTT on each foot.  Her left foot finally maintained the correction, however the right never did.  We were down to two options, a Taylor Spatial Frame external fixator or the traditional clubfoot surgery.  After thoroughly researching the TSF (because surgery was NEVER and option) we sought out the "guru" of using the TSF in accordance with the Ponseti Method protocol.  That was Dr John Herzenberg at Sinai Hospital in Baltimore. Although the TSF is barbaric and painful, it's is still a better option than the traditional surgery.  The TSF was a summer of pain and suffering as opposed to a lifetime of pain, stiff foot, and arthritis that goes along with the traditional surgery. I highly recommend Dr Herzenberg for treating your child, he is wonderful. The people at Sinai are wonderful. And across the street they have a Ronald McDonald type house called the Hackerman-Patz House. Incredible people there as well.  If you have the oportunity to see him, please take it! :)

The key to successful clubfoot treatment does lie with just the doctors. They are only a piece of it.  We as parents play the biggest roll in correction, with our dedication and willingness to put the bar back on again and again when the baby/child kicks them off. When they cry because they just don't want to wear them anymore, we have to be strong and not give in. It's the only way. They can't help themselves, we have to be the ones. I don't mean to sound cold because I am by far not a cold person, but you need to be able to put aside your sympathy because it's uncomfortable, or because they continue to cry and you just want to hold them without the shoes/bar. Keep It On Always is my biggest piece of advice! :) Ok, let me jump off this soapbox now LOL I just wanted to add my 2 cents. Or maybe kinda like 50 cents LOL

Karen - posted on 11/13/2009

Hi Nicole, sorry to hear that the treatment has gone on for so long, it shouldn't take more than a few weeks. It's possible that your daughter has what's called a complex clubfoot and she may need to see a really experienced Ponseti doctor to correct it. Where is she being treated? You can email Dr Morcuende, Dr Ponseti's successor in Iowa - jose-morcuende@uiowa.edu - to ask his opinion, send clear photos of her feet. Do you know about the yahoo group called nosurgery4clubfoot? It's a great support for parents.

Nikki - posted on 11/02/2009

Quoting Christina:

Anyone using Ponseti method for correction?

Hello...My daughter was born in March 2008 with a club foot. It's been a pretty long process, but we've managed through so far. She had casts, heel cord surgery, cast again, and Ponseti shoes with a bar. She started out wearing the shoes all day and now it's just at night. We recently moved from New York to Maryland. Our doctor in NY, said she would need to wear the shoes at night until she was 2. However, the doctor that we switched to in Maryland is now recommending age 4. The doctors follow the Poseti method for correction. Just wondering if anyone else is using this, did it work for your child, and how long did your child have to wear the shoes?

Thanks!
Chris

Malin - posted on 10/13/2009

Hello. My daughter was born with clubfoot in august this year. In Sweden we use the Ponsetti methode in the Östra hospital in Gothenburg, there we attend with our daughter. We've been told that she is going to have the shoes with the bar until four years of age. /Malin

Amanda - posted on 08/17/2009

I so agree with anyone who thinks keeping the boots and bar on longer is a good idea, My little girl was born Oct 23, 2006 with bilateral clubfoot, very severe in both but more so in right foot, she was casted 2 hours after she was born, we did casts for 6 months, tenotomy at 2 months, then boots and bar from 6 months till about 2 1/2, everything has been looking really good but now suddenly she is getting foot pain and gets bad cramps when swimming (?) so we are back to specialist on Wednesday to see if she needs to be casted again, I sure hope not!!

Lisa - posted on 08/14/2009

my son wyatt was born with both feet club'ed bilatreal club feet he wore his bar and we called them magic shoes at age 1 for about a year. and both his feet came down alot then he had his tendents cut to bring them down more now he needs to have them opperated on to fix them the rest of the way wyatt at birth had a 40% chance of walking he is now 4 and riding a bike so this method works stick with it

Melissa - posted on 07/21/2009

Our doctor follows the Ponseti method, (studied under Dr. Ponseti). Our son was born with 2 severely clubbed feet. We're told he will need to sleep with the shoes on for at least a couple of years, but it may end up being longer. I think it depends on how each child progresses. It doesn't mean your first doctor was wrong.

April - posted on 04/01/2009

WOW! Where were all you amazing parents when I went through this 7 years ago with my son?? I am not familiar with the method that you speak of, however, my son was born with severe club feet and at 3 days old had his first 'release'. We did the casts and several more AT releases and he wore the botties and DB bar until he was 18 months. We have had no further issues. I was lucky enough to have my son seen at Shriner's in Philly years and years ago. He is now an active 7 year old that takes karate and does everything the 'normal' kids do. Good luck to you =D

Billie - posted on 03/31/2009

If you are seeing Dr Herzenberg stick with him and his advice. He is amazing! If you are not using Dr H consult with him when you get a chance.

I live in San Antonio, TX and my son is treated by Dr. Lund in Dallas, TX. Jack will also be wearing the boots and bar until he is 4. Seems like a long time and I know it won't always be easy but the results will be worth it. At age 2 the chance of a clubfoot relapse increases. That is why many ponsetti trained doctors are recommending the wear through 4 years.

My son was born with LCF and also a dislocated patella. We've been seeing Dr. H since October for his knee. He went through surgery in February and now we are back in Baltimore for 6 weeks of physical therapy. My son just got his cast off today! and starts PT tomorrow.

Jodie - posted on 03/02/2009

Hi all. My son Zach was born November 2004 with Bilateral clubfoot. Our doctor followed the Ponseti method, but told us at age 2 that he was done with the brace. Unfortunately both of his feet relapsed. He had an ATTT Surgery on both feet at age 3 and about 6 weeks had a second surgery on the right foot. His foot looks awesome now and we hope this is it. Just my two cents... keep the kids in the brace as long as you can. Hopefully it can keep you from relapse. BUT... sometimes kids experience relapse and you as a parent did everything you could. My son is living proof that even with a relapse you can still be very active and move around like a normal little kid.

Krista - posted on 02/25/2009

Is nice to hear from other Moms who have been in this journey longer. My daughter was born in September with RCF. We began Ponseti method treatments at just 4 days and after 15 casts is now in her shoes and bar 23/7. I worry about relapse and working hard to do everything "right" so she canbe an active young lady. Her foot seems still so tight...but perhaps will never have the range of the other? It looks good, just tight.

Angela - posted on 02/24/2009

My doctor has recommended the shoes at night until age 5 I think.  I look at it this way, the longer the shoes are on the less likely for relapse or later problems.

Hannah - posted on 02/13/2009

hello.....My son was born in october 2008 with a clubfoot.he just had the same procedures and is now in the boots with the bar. My nephew had the same, he was in the boots till he was 4,he is now 6 and leads a normal active life with no long lasting effects therefore i would thourghly recommend this procedure.

Lyndsey - posted on 02/12/2009

Thank you for the yahoo group, Karen!! We are not using the exact Ponseti method.

Christina - posted on 02/12/2009

Karen,



Thanks for the Yahoo group. I did not know about that one. I'll check it out.



Chris

Karen - posted on 02/11/2009

Hi Chris, my son Alex born in Jan 2003 was treated by Dr Ponseti and at the age of 6 now his feet look fantastic. The latest protocol is to keep on with the shoes until age 4, this was extended because of the risk of relapse after early release from the shoes. Have you joined the Yahoo group Nosurgery4clubfoot? There is a lot of info on there for us parents. Take care, Karen

Nathaly - posted on 02/08/2009

Hi Chris,
My son was born in aug. 2007. He was in a cast for 8 months, had surgery at 4 months, the boots for 3 months, 23 hours a day and now only at night. My doctor thinks he needs them on until he's 5. But he's walking, almost running and doing really well. Putting the boots on is so far is no problem, he doesn't know any better.
Hopefully it will stay that way.
Good luck.
Nathaly

Freddy - posted on 02/06/2009

My daughter was born in March 2005 and underwent the same process. She wore the boots at night until she was 3. At which point did require follow up surgery on her left foot, but has not needed boots or any ops since then. We are down to yearly visits and with her in ballet and swimming are very proud of her progress. The boots at night thing became such a routine at our place, we sorta missed it for a while. At the end of the day it was well worth it.