Wednesday, December 22, 2010

Relapse Concerns

My 2 year old son - front & back view of his legs

I've been much more involved in clubfeet support groups going through all of this a second time, and I've heard many more stories about relapse. The leg braces are supposed to over correct the feet and once they stop wearing them the feet start to turn back inward. But it's supposed to stop at the normal neutral position. That doesn't always happen.... sometimes it just keeps turning and turning and suddenly your child is walking on the side of his/her foot. My son's left foot has always rolled a little to the outside, and our doctor has assured us that when his feet get to a more neutral position it'll naturally fix itself. He's only been out of braces for about 5 months.

One thing that has been bothering me is other parents being surprised that my son did not receive the tenotomy surgery (cutting of the achilles tendon). They are surprised/confused because they had been told that without a tenotomy there was a 100% guarantee of a relapse. This concerns me on two levels - first off... is my son doomed to start the whole process over again? And/Or second... these poor family's who put their children through surgery when it may not be necessary!

I am posting the photos and video in the hopes that those who have gone through a relapse might weigh in their opinions. Is there anyone who did not have a tenotomy who was able to avoid a relapse? I don't believe my son is relapsing right now, his legs are more forward facing than they were 5 months ago when he stopped using the braces - and our doctor wasn't concerned about how they roll onto the sides slightly. BUT - I am willing to listen to criticism/opinions as I know that doctors are not always right.

EDIT 1/3/2011: We spoke with the doctor and my sons feet are doing exactly what they are supposed to be doing. A relapse would actually be rolling the complete opposite way, so that the outside edge of his foot is on the bottom. Whew! Feeling a little silly for not thinking it through, but glad we got some answers.

Monday, December 20, 2010

Breastfeeding a Triangle

Breastfeeding with leg braces on is an art form... but with pillows and some patience anyone can do it! :)

Thursday, December 16, 2010

Two Weeks in Braces

So it's been two and a half weeks of bracing. We've had one week with the original shoes that had the crappy rubber insert and then the rest of the time with big brothers old shoes. Our doctor said it was "very resourceful" of us to switch to the old shoes.

Baby girls feet are still angled down when at a resting position. We've been doing her physical therapy stretching, but I have a feeling the tenotomy will be our destiny.

Here is a photo of big brother's legs after one week of braces and then little sister after two weeks... see the difference? Daughter is in blue and our boy is in brown. Yeah... she's doomed.

Our doctor also said that there isn't anything we can do about her toes right now.

Side Sleepers

Many club foot babies appear to have the desire to sleep on their side in common. During the casting process this is easy to do, but once the leg braces are on it is near impossible. Lately I have been using our boppy pillow to prop her up on the side and she loves it! Boppy's are not meant for children to sleep with, so use at your own risk.

With my son we just propped him against the side of his sleeping area. Worked okay too!

What tricks have you used?

Monday, December 13, 2010

Giant Clothing Pity Party

Let me start this post off by saying do not feel like I am ungrateful for gifts we have received. Many of these I probably registered for before we knew that our children had clubbed feet. Why would someone ever think their child would be unable to wear a certain article of clothing?? Right?

These are all 3 month and under size saved from my son. I saved them figuring that although he was unable to use them, surely our next child would be able to. Well... we all know how that turned out. WRONG. Sure, I could cut the clothing... but the sensible conservationist person in me says not to ruin a perfectly good piece of clothing that someone else could use. We have plenty of other clothing that does work with the casts and braces, so why ruin them?

I'm not going to ruin them... but for my own sanity I do need to get rid of them. It's weirdly depressing to have around. 19 footy pj's, 12 sleeper tubes, pants with feet or narrow ankles,
handful of socks and infant shoes. That's a lot of clothing that someone else can use! Thank goodness for girlfriends who have baby boys! Get ready for a whole new wardrobe!

Tuesday, December 7, 2010

First Week In Braces

Since my post last week my daughters toes have curled even more! Now the 3rd, 4th, and 5th toes are all curling under. I have a feeling that the casting was holding the 3rd & 4th toes up and now that the cast isn't there anymore they are free to curl. The surgery to correct this is a tenotomy of the tendons in the toe/foot. They are too tight and are causing the toes to curl down permanently.
We have submitted photos to our orthopedic doctor to see if putting rolled up cotton under her toes would do anything to correct the tightening without doing surgery. I will update when
we find out the answer!
When we received our ponseti bar and mitchell sandals last week they cut out the leather tongue and provided us with this rubber insert to help distribute the weight of the middle strap. It is our official review that the rubber insert doesn't work. We were unable to tighten the strap small enough to push her ankle into the back of the boot. This caused blisters on her ankles, and also wasn't doing the job of getting her foot into the desired "L" position. After trying it for 6 days we threw in the towel and found our son's original sandals with the intact leather tongue. Thankfully they wore the same size! We were able to tighten the middle strap two holes tighter and get her ankle down into the shoe. MUCH BETTER. We're not sure who made the decision to start
using the rubber insert... but I think it was meant for a baby much bigger than ours.

The bruising in her ankles went away after about three days.

Her feet are still angling downward quite a bit when just relaxed, so I am thinking a tenotomy is in our future for her ankles. Maybe we can take care of the toes at the same time and just have one trip through anesthesia. Who knows!

On a developmental side note, she is already starting to get some strong muscles and can even get her tush in the air a little bit. My mom is convinced she will be an early crawler because I was crawling at 4 months old. Maybe the clubbed feet won't slow this girl down afterall.

Sunday, December 5, 2010

Ponseti Method

This is straight up copy/pasted from Wikipedia. I know, I'm lame this week... Ha!

Ponseti treatment was introduced in UK in the late 1990s and widely popularized around the country by NHS physiotherapist Steve Wildon. The manipulative treatment of clubfoot deformity is based on the inherent properties of the connective tissue, cartilage, and bone, which respond to the proper mechanical stimuli created by the gradual reduction of the deformity. The ligaments, joint capsules, and tendons are stretched under gentle manipulations. A plaster cast is applied after each manipulation to retain the degree of correction and soften the ligaments. The displaced bones are thus gradually brought into the correct alignment with their joint surfaces progressively remodeled yet maintaining congruency. After two months of manipulation and casting the foot appears slightly over-corrected. After a few weeks in splints however, the foot looks normal.

Proper foot manipulations require a thorough understanding of the anatomy and kinematics of the normal foot and of the deviations of the tarsal bones in the clubfoot. Poorly conducted manipulations will further complicate the clubfoot deformity. The non-operative treatment will succeed better if it is started a few days or weeks after birth and if the orthopedist understands the nature of the deformity and possesses manipulative skill and expertise in plaster-cast applications.[2]

Clubfoot (talipes equinovarus) affects almost 150,000 children annually. Almost 80% of these children live in developing nations. Dr Ponseti's technique is painless, fast, cost-effective and successful in almost 100% of all congenital clubfoot cases. The Ponseti method is endorsed and supported by World Health Organization [3], National Institutes of Health[4], American Academy of Orthopedic Surgeons [5], Pediatric Orthopedic Society of North America [6], European Pediatric Orthopedic Society [7], CURE [8], STEPS Charity UK [9], STEPS Charity South Africa [10], A Leg to Stand On (India) [11] and others.

At the 2007 International Clubfoot Symposium attended by 200 doctors from 44 countries, papers were presented for an estimated 10,000 children successfully treated with the technique around the world in the past few years.

The Ponseti International Association for the Advancement of Clubfoot Treatment was founded in 2006 at the University of Iowa. The Ponseti International Association aims to improve the treatment of children born with clubfoot through education, research and improved access to care.

Steps are as follows:

1. The calcaneal internal rotation (adduction) and plantar flexion is the key deformity. The foot is adducted and planter-flexed at the subtalar joint, and the goal is to abduct the foot and dorsiflex it. In order to achieve correction of the clubfoot, the calcaneum should be allowed to rotate freely under the talus, which also is free to rotate in the ankle mortise. The correction takes place through the normal arc of the subtalar joint. This is achieved by placing the index finger of the operator on the medial malleolus to stabilize the leg and levering on the thumb placed on the lateral aspect head of the talus while abducting the forefoot in supination. Forcible attempts at correcting the heel varus by abducting the forefoot while applying counter pressure at the calcaneocuboid joint prevents the calcaneum from abducting and therefore everting.

2. Foot cavus increases when the forefoot is pronated. If cavus is present, the first step in the manipulation process is to supinate the forefoot by gently lifting the dropped first metatarsal to correct the cavus. Once the cavus is corrected, the forefoot can be abducted as outlined in step 1.

3. Pronation of the foot also causes the calcaneum to jam under the talus. The calcaneum cannot rotate and stays in varus. The cavus increases as outlined in step 2. This results in a bean-shaped foot. At the end of step 1, the foot is maximally abducted but never pronated.

4. The manipulation is carried out in the cast room, with the baby having been fed just prior to the treatment or even during the treatment. After the foot is manipulated, a long leg cast is applied to hold the correction. Initially, the short leg component is applied. The cast should be snug with minimal but adequate padding. The authors paint or spray the limb with tincture of benzoin to allow adherence of the padding to the limb. The authors prefer to apply additional padding strips along the medial and lateral borders to facilitate safe removal of the cast with a cast saw. The cast must incorporate the toes right up to the tips but not squeeze the toes or obliterate the transverse arch. The cast is molded to contour around the heel while abducting the forefoot against counter pressure on the lateral aspect of the head of the talus. The knee is flexed to 90° for the long leg component of the cast. The parents can soak these casts for 30–45 minutes prior to removal with a plaster knife. The authors' preferred method is to use the oscillating plaster saw for cast removal. The cast is bivalved and removed. The cast then is reconstituted by coapting the 2 halves. This allows for monitoring of the progress of the forefoot abduction and, in the later stages, the amount of dorsiflexion or equinus correction.

5. Forcible correction of the equinus (and cavus) by dorsiflexion against a tight Achilles tendon results in a spurious correction through a break in the midfoot, resulting in a rockerbottom foot. The cavus should be separately treated as outlined in step 2, and the equinus should be corrected without causing a midfoot break. It generally takes up to 4-7 casts to achieve maximum foot abduction. The casts are changed weekly. The foot abduction (correction) can be considered adequate when the thigh-foot axis is 60°After maximal foot abduction is obtained, most cases require a percutaneous Achilles tenotomy. This is performed in the cast room under aseptic conditions. The local area is anesthetized with a combination of a topical lignocaine preparation (eg, EMLA cream) and minimal local infiltration of lidocaine. The tenotomy is performed through a stab incision with a round tip (#6400) Beaver blade. The wound is closed with a single absorbable suture or with adhesive strips.The final cast is applied with the foot in maximum dorsiflexion, and the foot is held in the cast for 2–3 weeks.

6. Following the manipulation and casting phase, the feet are fitted with open-toed straight-laced shoes attached to a Dennis Brown bar. The affected foot is abducted (externally rotated) to 70° with the unaffected foot set at 45° of abduction. The shoes also have a heel counter bumper to prevent the heel from slipping out of the shoe. The shoes are worn for 23 hours a day for 3 months and are worn at night and during naps for up to 3 years.

7. In 10-30% of cases, a tibialis anterior tendon transfer to the lateral cuneiform is performed when the child is approximately 3 years of age. This gives lasting correction of the forefoot, preventing metatarsus adductus and foot inversion. This procedure is indicated in a child aged 2–2.5 years with dynamic supination of the foot. Prior to surgery, cast the foot in a long leg cast for a few weeks to regain the correction.

Wednesday, December 1, 2010

Woes about Toes

Our son has what they call "curly toes" where the middle toe is too low and it's pushing up on the toe next to it. He was born with the right one that way, and through correcting his clubbed feet the left has also crossed. It is possible that over the next few months they will fix themselves as his feet move into neutral positioning, but if not... we may be headed for a minor surgery. They will simply release the tendon that is holding the middle toe too low and then things should align naturally. We've battled whether this is cosmetic surgery or not, and it is something we will talk about extensively before agreeing to surgery. It is my feeling that this would be mighty uncomfortable in shoes as his feet grow.

Our daughters pinky toes like to curl under so that the nail is on the bottom. We haven't asked
the doctor about it, but the casting technician was pretty concerned and told us to stretch her out anytime we see her trying to curl under. It's a little hard to photograph - but this is the bottom of her foot and you can see the white in her nail on the pinky toe.