Take lots of pictures, from all sorts of angles, but especially take pics of the feet from both front and back so that we can see the top of the foot and also the soles. If the soles are very turned in and hard to get a direct view of, take a pic of each foot's sole individually. This is especially important to reference should your child's foot become complex via improper casting. The best proof that it was not present at birth are these pics.
While casting, also take pics of the tops, sides, and soles directly on between each cast change. This is your record of the treatment. Also always take pics of the cast, directly on with the knee pointing directly towards you, and a profile pic from the side. Make sure to mark the toes with a pen so you will know if the cast slips.
It’s important to remember that when Dr. Ponseti’s proven results can’t be obtained in 5-7 casts for almost ALL clubfeet, that is when people will begin saying that “it shouldn’t be that many casts”.
9 casts is really quite a lot, even for the most severe feet. The norm is 5-7 weekly casts, with 9 being the absolute most that should ever be necessary. This means that 9 or more casts tells us that the caregiver does not have the skills required to correct the foot properly. There are no feet that can't be corrected in 9 or less casts in skilled hands.
When people say “it can take more casts”, it is true that it can take more casts, but that isn’t the Ponseti Method.
Similar to when people say fiberglass casts aren’t ok, while others say they can work fine. Only one of those is “Ponseti Method”. The other is a modification and therefore technically something else.
We could equate this to the comparison of some feet can be corrected with below the knee casting and bracing with all feet can be corrected with full leg plasters and bnb, and only one would be Ponseti Method. Some feet absolutely were able to be corrected with other methods and casts in the past. This is not untrue. Not every clubfoot It’s not possible for those other methods to have had absolutely zero success. That’s not the same though as having low success rates.
When the Ponseti Method is done correctly, feet don’t become complex, and the casting almost always goes swimmingly and swiftly (consider dr Dobbs’ accelerated casting program), and yes, 5-7 casts are all that is needed. Then, if braced consistently, slow weaned to nights and naps over the first year, and braced till at least 5y, ~95% or better have success (no relapse).
When we say it “can take more”, yes it can. But is that what you want for your treatment plan, or do you want the Ponseti Method?
If receiving proper Ponseti Methond is important to you, after 9 casts it is certainly time to stop and find a Ponseti doc. If you need help with this, please email or check in with the Facebook Support Groups,...
I
think it’s important to remember that when Dr. Ponseti’s proven results can’t
be obtained in 5-7 casts for almost ALL clubfeet, that is when people will
begin saying that “it shouldn’t be that many casts”. 9 casts is really quite a
lot, even for the most severe feet.
When people say “it can take more casts”, it is true that it can take more casts but that isn’t the Ponseti Method.
Similar to when people say fiberglass casts aren’t ok, while others say they can work fine. Only one of those is “Ponseti Method”. The other is a modification and therefore technically something else.
We could equate this comparison of some feet can be corrected with “below the knee casting and bracing” with “full leg plasters and bnb”, and only one would be Ponseti Method. Some feet absolutely were able to be corrected with other methods and casts. It’s not possible for those other methods to have had absolutely zero success. That’s not the same though as having low success rates.
When the Ponseti Method is done correctly, feet don’t become complex, and the casting almost always goes swimmingly and swiftly (consider dr Dobbs’ accelerated casting program), and 5-7 casts are all that is needed. Then, if braced consistently, slow weaned to nights and naps over the first year, and braced till at least 5y, ~95% or better have success.
When we say it “can take more”, yes it can. But is that what you want for your treatment plan or do you want the Ponseti Method?
The fabulous thing about this method is how well it works with only the small surgical procedure to nick (sever) the Achilles tendon. But it only works when the bracing schedule is adhered to strictly. The bracing part is the most important part of the method actually. You may wish to do some research into Dr. Ignacio Ponseti and learn about how surgeons straight up ignored his research and results for decades, preferring to cut into feet with terrible success rates, effectively delivering a lifetime of pain and usually multiple surgeries to babies. It wasn’t until the late 90’s that parents started demanding that their children be treated with the method, and that is when Dr. Ponseti came out of retirement and started fixing feet again. After that he worked every day till his death both helping babies and training drs and people from all over the globe to use his method. The method has even been applied to older children worldwide, children who had been walking on the tops of their feet for years already. Sadly, the method does not work once surgery is performed and many people aren’t able to benefit from it as adults.
For me, the method is one of my favorite things in the whole world and I will be forever grateful that my child was able to be treated with it. For us, club foot is a distant memory for mama, and a non-existent memory for my child. She’s gonna be 18 soon and has no complaints about her foot. Bracing is something we quickly got used to after a sharp learning curve getting the shoes on tight enough so as to not cause sores. The first 3 months sailed by and I did choose to wean slowly over the first year as Dr. Ponseti prescribed. I was fortunate enough to consult with him directly via email and his recommendation for bracing was to do as many hours a day as possible once we were weaned down to nights and naps (12-14hr/day). Sometimes even as old as 2 and 3yo she could easily do 16hr. I would like to think that was a significant factor in her success. For me, I love the foot abduction brace (bnb) since I know it was the key to my child’s awesome and fully functional foot.
This bracing study may be of interest:
Dorsiflexion and Plantar Flexion graphic
Dorsiflexing and pushing at the knee
Checking dorsiflexion, this shows about 25-30 degrees
Tenotomy is either necessary or it isn’t. It depends on whether or not the foot can dorsiflex at least 10 degrees, if not 15-20 or better after the 6th (second to last) cast. It’s not something parents can recommend or not recommend or refuse if they want their child to have a corrected foot. Unlike other surgical procedures, without this minor tendon nick, the foot will not be able to flex normally and all the casting in the world will not allow the foot to become corrected.
Most clubfeet will need this procedure (85-95%). A few might not because they meet the dorsiflexion requirements. The foot either needs it or it doesn’t. The one active part you can take as a parent however is knowing when your child has enough dorsiflexion after tenotomy. That's the critical part. If they screwed up the tenotomy or the tenotomy cast (many do not dorsiflex it enough, or they don't get the tendon cut properly and can't), many doctors send baby away with a cast that doesn't allow for full dorsiflexion should be and the tendon heals still shortened.
This graphic shows what dorsiflexion is. A foot standing flat is considered 0 degrees or neutral. You want at least 10 degrees dorsiflexion (toes up). Or more. 10 is the bare minimum. These feet really do better with 20 degrees or better.
Keep in mind that the tenotomy is so much less of a surgery than it is a simple procedure where they use a scalpel and make a small ‘nick’ of the Achilles tendon. It takes only a few seconds and is very minor.
I wish it wasn’t referred to as surgery because the Ponseti method is a “Non-Surgical” method. The tenotomy should not be considered surgery in any sense beyond what it actually is, and should not be referred to in that way. Not only because it is so very minor, but also to distinguish between surgically corrected clubfoot and non-surgically corrected clubfoot.
We do not want to equate our non-surgical experiences with those who had surgical corrections. The outcome is so vastly different, even as compared to the most successful surgical corrections, that it is unfair to those who experienced surgical corrections.
You’re correct that most the parents here don’t have older kids yet but the hope and expectation is that most of these very young kids who are fortunate enough to be treated with the Ponseti Method will be able to grow up with normally functioning and practically pain free feet because the standard of care now is the Ponseti Method. So many kids did not receive this treatment, even if they may have had some of the various parts of the method. This is the root of the "modifying the method" came about because doctors would employ one part or another of the method but not all of it and they would always have less than stellar restults. The Ponseti Method must be folowed. If you only use one part of it, it isn't going to work properly, and it's not "the Method".
Dr Ponseti however had actually figured it all out in 1947 and he presented his findings to the world in 1963.
He was ignored. For decades. Ironically, this is technically not a “modern” treatment. Yet it seems that way because so many children such as yourself were not given the same chance as kiddos are now. One of the very best things about this method is that even the most severe feet can be corrected, usually in 5-7 weekly casts. 9 at most when the feet are particularly stiff, but that is actually rare when the doc is skilled.
It should be noted that bracing is equally, if not technically more important than the casting phase, and the only brace we know of that is capable of maintaining a corrected clubfoot is the foot abduction bar (fab/bnb). While there are other braces now, none are proven yet and some we know for sure are ineffective (afo).
Bracing must be strictly adhered to and I personally feel that dr Ponseti’s schedule of slow weaning over the first year is essential for maintaining correction. Many docs do not do that nowadays and I believe it shows in the higher relapse rates we are seeing of kids less than a year old for sure, and many others older than a year. Relapse happens, but it shouldn’t be happening at the frequency we see in this small sampling on this fb group. It’s concerning and notable IMO.
Bracing should also continue till 4-5, and in some cases 6 years of age. The longer you brace, relapse rates go down. That last year can give you an additional 5+ percent in the positive.
I realize you probably know all this but I mention it here for this new mom as well as to reiterate so you can help the parents who come into contact with you. Even the most severe cases now will not (or should not) undergo the major surgery that you had. The surgery that some require after Ponseti treatment is much less invasive and should still end with a good foot that can be mostly pain free.
People suffering like you have is actually going to be a thing of the past, hopefully. Although it will take time because there’s still a bunch of young people and kids under the age of 15 that weren’t able to get non-surgical correction (Ponseti). Your support for those kids is amazing and I’m really glad you’re around to help them and their parents.
It’s
going to be a long haul for many though and it is heartbreaking to think of all
the missteps the Orthopaedic surgeons of the world made as a whole by ignoring
dr Ponseti’s method for decades.
You can check for some things yourself if you like. Unfortunately relaxed pics like this don’t tell us so much.
If you bend knee, use your whole palm on the whole sole and push toes up as far as possible, this is dorsiflexion (see above question). It should be 10-15 degrees minimum, but more is better. While you have knee bent, rotate the foot out as far as it will go, this should be at least 60 degrees, if not 70. It should be the same or better than what the brace is set at.
Look at the soles, is there a transverse (horizontal, across the sole) crease? If no, great!
From the top we shouldn't see signs of anything concerning such as a hyperextended great toe. If the toe is being sucked in over time/castings, this is concerning so we want to see the top of the foot as much as the sole and heel.
You can take pics of the positions mentioned above and post them to the Facebook groups for help from other parents.
Checking abduction for clubfoot
Take pictures from the top straight down (relaxed
If babe is pushing when you hold/stand them at all, if you can, have babe bear weight and take pics directly from front and back.
Take another of the sole without the leg showing behind (more straight or directly on so as to see the shape).
Also, take pic from the side (profile) with the knee bent and also not bent (2 pics), and use your whole palm on the whole sole (but don’t let your hand fold over the leading edge) and push the toes up as far as they will go. This will show dorsiflexion.
Checking dorsiflexion - bend knee, push toes up as far as possible using your whole palm on the whole sole of the foot
The fabulous thing about this method is how well it works with only the small surgical procedure to nick the Achilles tendon.
But it only works when the bracing schedule is adhered to strictly. The bracing part is the most important part of the method actually.
You may wish to do some research into Dr. Ignacio Ponseti and learn about how surgeons straight up ignored his research and results for decades, preferring to cut into feet with terrible success rates, effectively delivering a lifetime of pain and usually multiple surgeries to babies. It wasn’t until the late 90’s that parents started demanding that their children be treated with the method, and that is when Dr. Ponseti came out of retirement and started fixing feet again. After that he worked every day till his death both helping babies and training drs and people from all over the globe to use his method. The method has even been applied to older children worldwide, children who had been walking on the tops of their feet for years already. Sadly, the method does not work once surgery is performed and many people aren’t able to benefit from it as adults.
For me, the method is one of my favorite things in the whole world and I will be forever grateful that my child was able to be treated with it. For us, club foot is a distant memory for mama, and a non-existent memory for my child. She’s gonna be 18 soon and has no complaints about her foot. Bracing is something we quickly got used to after a sharp learning curve getting the shoes on tight enough so as to not cause sores. The first 3 months sailed by and I did choose to wean slowly over the first year as Dr. Ponseti prescribed. I was fortunate enough to consult with him directly via email and his recommendation for bracing was to do as many hours a day as possible once we were weaned down to nights and naps (12-14hr/day). Sometimes even as old as 2 and 3yo she could easily do 16hr. I would like to think that was a significant factor in her success. For me, I love the foot abduction brace (bnb) since I know it was the key to my child’s awesome and fully functional foot.
This bracing study may be of interest to you.
While it’s true that many Dr's reduce to 12hr after 3mos, that is a modification of the Ponseti Method. If you want to reduce your risk of relapse, following dr Ponseti’s slow weaning schedule is important. This is the same as Dr. Dobbs does, as well as most Ponseti loyalist Dr's.
After the first 3 months you can reduce a couple hours at a time every 2-3 months so that you end up at 12-14hr/day at or around a year old.
Personally I feel that the many relapses that have been reported here before a year old are the result of this damaging trend to make parents happy by reducing way too much way too early.
Another issue with reducing early is sudden intolerance and sleeping issues. Babies aren’t fans of transitions and changing from full time wear to sleep time only at a young age is quite rough for some kiddos.
There are no brace police. You can brace as much or as little as you like depending on what you wish to do to try to prevent relapse. Many of us have reduced slowly when out doctors say differently.
This bracing study may be of interest to you. The schedules and associated relapse rates are about half way down.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC65980...
Another response along this topic:
Might you consider slow weaning a couple hours at a time every 2-3 months over the first year instead of dropping to 12-14 suddenly? It really is a much better option and can help reduce the risk of relapse. I know it sounds amazing to be out of the brace all day but these feet really are not meant to be reduced so quickly. Having to go back into casts and start over later is way more annoying than just bracing.
Wider is not a problem unless it’s excessively wide. There's an excess on both sides, both larger and smaller. But if we keep to the shoulder width heel to heel plus or minus an inch or so... It's in the range. Some kids get super fussy when the bar gets too small and do really well with a bar that is a smidge longer than shoulder width. Consider that kids wearing fixed length bars often go into a larger bar so they can grow into it. Larger bars are almost never a problem, due to physics. Shorter bars, however, are a logistical nightmare when it comes to pulling up on the heels Short bars are always a problem with bracing.
If you put your own feet into a dorsiflexed and abducted position, the move your legs in and out... feel what happens to your comfort level and also the position of your heels. Heels go down when the bar is wider. It’s often more comfortable as well.
So, no. Only too short is a problem. Unless it's like crazy too long... we've seen that before but it's so obvioius it's usually not a problem fixing.
Opposite shoes or reverse last shoes was commonly used for surgically treated feet, but they won’t do anything to prevent relapse for Ponseti feet. They never did work that well for surgical feet either. This recommendation is antiquated and ineffective. Likely super uncomfortable too.
I’m not sure the blister bandaids are the same as duoderm but I do know that duoderm will heal much better on than a blister will heal on its own. It can also be a barrier between the shoe and the skin so you can continue to brace. The bandaids may not be as well effective for protecting the spot maybe?
The skin does need to be healed else even a small amount of pressure will aggravate the sore again.
Also, 2 weeks out of the brace is a very long time. It may be worth a trip to the doc to check to see if anything has changed, and yes if you plan to keep the brace off for any longer, a holding cast is the very best idea.
In
the meantime, and even if you do get a holding cast, I suggest using the
blister bandaid or better would be to get duoderm and use it on that spot. The
way it works is that the white blood cells will collect under the duoderm and
accelerate healing. It was designed for bedsores so it is meant to stay on till
it falls off on its own. When it falls off you should see nice new skin that
should be strong enough for bracing.
