2018 Update on N's Journey

January 2018

We've begun taping N's feet to increase the external rotation of her feet and support hyper-pronation in order to keep the arch from forming too early.  With clubfoot the goal is to keep the soft tissue flexible and the arch is formed by tightening tissue.  When clubfoot is at play, that tightening can cause the foot to turn back in.  The DTKAFO works to hyper-pronate the feet in order to combat the arch forming early and recurrence of the clubfoot deformity from happening. 

Initially N's feet were made complex by poorly skilled doctors and when clubfeet are complex or become complex, they can no longer be over corrected without causing a "break" in the outer edge of the foot.  This is why we are working with Jerald (he adjusted N's brace to increase the abduction/external rotation of the brace) to increase the external rotation of her bilateral clubfeet which coupled with walking, will keep the feet corrected through growth spurts. In addition, we are taping with the guidance of Physical Therapist, to further encourage her feet to gain abduction, especially during the day when she's not wearing the DTKAFO. 

Jerald also suggested Reverse Last shoes and N's often wearing them as well but one thing that can happen with PT/Kinesiotaping/Bracing, etc. is that the body counters the force applied by these mechanisms.  Because N started wearing the DTKAFO at a year old rather than immediately after correction/casting, the effects of the DTKAFO and the length of time she'd need to continue bracing were unknown but Jerald was happy to work with us and we've seen huge improvements in her feet right from the very start.  In December 2016 after 3 months full time in the Mitchell Brace I had x-rays taken and then I again had x-rays taken in July 2017 after 3 months wearing the DTKAFO for naps and night time, here are the comparisons between the two. 

Notice the rotation of her feet before and after wearing the DTKAFO.  Look at the difference in her heal bone, it finally dropped after 10 months of bracing (7 in the Mitchell Brace and 3 in the DTKAFO)!

 

End of the Year Update on N's Little Feet!

 October 2, 2017

In October, N had another check up with her orthopedic surgeon.  Again, he said she was doing really well and had great flexibility and well corrected feet.  He didn’t have any concerns!  And in case this is your first visit to the blog, N was born with bilateral clubfeet that were made complex through poor manipulations and casting.  When she was 4 months old and after 13 sets of casts in our home state, we traveled to Iowa and her feet were corrected by a leading Ponseti clubfoot doctor in August 2016.  She’s 20 months now and running and climbing everywhere! 

After we saw the ortho. We walked over to the physical therapy office where the French Functional Method of clubfoot treatment is done by physical therapists.  The therapist was thrilled with N’s feet and couldn’t believe how well corrected they are and the flexibility she has.  She said typically parents are just night bracing at this point and was impressed that we are doing both naps and night time for a total of about 15 hours of bracing every 24 hours.  She couldn’t believe we are also Stretching Through Play for Clubfoot daily. In addition, the PT showed us the stretches used in the French method of correction because I was interested and wanted to know for future reference.  We left feeling at ease with another good report.

October 22, 2017

A couple of weeks later, N and I jetted off to Maine to visit friends and so we decided we’d also sneak in a face to face check up with Jerald Cunningham who designed, fabricated and fitted N with her DTKAFO Cunningham Clubfoot Braces.  During the check up Jerald watched N as she walked and ran up and down the hallway, he stretched her feet noting 20-25 degrees of dorsilflexion or range in her Achilles tendon, and he checked the fit of the braces.  The braces  need to be adjusted for growth (we’d already made two adjustments).  

As she was running Jerald made the observation that her feet, particularly her right foot, were nearly straight the majority of the time, rather than angled away from the mid-line of her body/rotated outward.  He explained to me that other children her age typically walk with their feet angled out for stability and that in order to maintain correction of her feet through the growth spurts of four and five years old, her feet needed to be externally rotated (which is typically achieved through casting but wasn’t in her case) but why?  He explained that when the feet are externally rotated the way the feet make contact with the ground applies a corrective force against the big toes pushing the feet outward with each step.  

Jerald adjusted the brace further rotating the foot pieces outward from about 40 degrees to 50 degrees and he ordered N “Reverse Last” or “Outflare” shoes for daytime use.  The soles of these shoes are wedged to help align the legs and feet with outward rotation by using the child’s weight and movement as they stand and walk.  The toes of the shoes flare away from the mid-line allowing the toes to spread out correctly for balance, rather than toward the mid-line of the body.

Feeling concerned, Jerald showed me photos of N’s feet from our initial appointment with him in April 2017 when N got her DTKAFOs after 7 months in the boot and bar brace.  N’s toes and forefoot were actually rotated inwards about 10 degrees rather than being over corrected and she seems to have slight Metatarsus Adductus which is where the toes turn towards the mid-line.  The MA is very slight and will resolve with the stretching force applied to them while she walks and in one month of wearing the "Reverse Last Shoes" i've already seen them improve and straighten more.  

N's Toes, you can see they're turned towards mid-line as she grips the ground when standing.  This is already resolving with the Reverse Last Shoes!

In December I began looking for a physical therapist to work on helping N gain more external rotation and to address the slight MA you can see in the image.  We met with one PT who suggested 
 getting N to use her tiptoes more and to make a game out of it by using suction cup toys high on the window or a mirror that she could reach for/toys up on a counter she can reach for.  Also, giving a bit of pressure to the ball of her foot with my hand, while she’s sitting so that her reflex would be to push back with the ball of her foot rather than curling her toes.  I continued meeting with PT's and have now found the right for us!  She will work with N to gain more external rotation in her feet through exercises and kinesiotaping, etc.  I look forward to working with her and sharing N's progress in 2018!

It's a "process": When your feet are one in a million

  Pim was born with atypical bi-lateral club feet and a  left hand wrist contracture. Starting at about 3 weeks of age we started casting her feet using the Ponseti method and started splinting her wrist at night and massaging and stretching it several times a day. Right before Thanksgiving, Pim had a tenotomy on each foot and then was put in her last set of casts. On Monday of this past week, she had her casts removed and started wearing braces. 

Right before leaving for Maine to get her braces, I received a care package in the mail. One the items in the box was a batik of giraffes with long straight legs. My friend said the batik reminded her of Pim and our journey to treat her club feet. What is most appropriate about those giraffe is that club feet is not just about a foot deformity. It is a leg/ankle and foot deformity. The inward turning and rotating of the feet is caused by the Achilles tendon being too tight and short. Tendons attach muscle to bone. The Achilles attaches the calf muscle to the heel and provides the tension needed to be able to flex and

extend the foot at the ankle. People with club feet have different soft tissue and musculature than the general population. The tissue tends to be bunched up where the contractures form and is more fibrous. In addition, clubfeet have more slow twitch muscle fibers that are shorter in length. It is not uncommon to see less capillaries and nerve endings connected to the tissue as well. All of this lays a foundation for weaker muscles and resistance to change. Pim has atypical feet, which occurs in about 1 in a 1,000 club foot cases. Her feet are extremely resistant to correction. For every study done about club feet there are always statistics about children who relapse or need multiple surgeries and casts. Pim is one of those children. When we began reading the literature, we discovered that the traditional method of casting and boots and bar bracing didn't have guaranteed outcomes for kids like her.

Based on our understanding of club feet we decided we wanted to pursue a treatment plan that addressed her club feet as part of a series of anatomical dysfunctions and the foot/ankle/leg as a system. In addition to her feet turning inwards and being stuck in severe plantar flexion,
Pim's left tibia is rotated slightly and like other children with club feet, she has underdeveloped calf muscles and small, chunky feet. We are hoping for better outcomes long term, less surgical interventions and greater flexibility and pain free movement.

Over the course of three days, Pim's braces were custom built, modified and fine tuned to best support her continued therapy. We've been in the braces for 6 days. She has adjusted well to them so far, with no disruption to her normal sleeping habits, no distress from discomfort or pain. She had a mild skin reaction to the straps, which is common and had a hot spot develop on her skin from pressure from one of the straps. We adjusted the tightness of the strap and her wearing schedule to help her skin adjust.

Who's following patients using the DTKAFO
Check out this map to see if a physician follows a kiddo in the DTKAFO in your area!!!

And if your child uses the DTKAFO, but your doctor is not on this map yet, we'd love to add them! Please leave us a comment with their information!

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ONE YEAR ON!!!

(I vaguely remember something about a clubfoot?! Which CLUBFOOT?!)

On 22nd November last year, my husband and I met Jerald Cunningham over Skype. My husband was still uncertain about the brace, questioning whether we ever should question our orthopaedist and wondering why I simply couldn't just be happy with what the NHS had to offer us for free! After an examination of Jonas's foot, it stroke us that yes, his foot was brilliantly corrected, however, what we'd been told was likely to be a "fat deposit" on the top of his foot, was more likely edema caused by how tight the middle strap has to be for the boots and bar. An hour of talking to Jerald, listening to his answers to our numerous questions and looking at his brace finished convincing me that this brace was indeed the answer to my worries and heartache. And FINALLY, hubby AGREED WITH ME!!!!!! (Surprised? You really shouldn't be ;) )

"When could you potentially fit us in, then?" - "Let me check... Monday? 28th?" - "I'll look up flights and let you know!" (I'm not one to overthink, I just HAD TO GOOOOOO!!)

On 26th November, I boarded a plane to Maine with Jonas. A very long flight for a 7.5 months old baby, but he literally charmed everybody: the hostesses on board kept coming for more smiles and peekaboos, the passenger next to me let him slaver all over his leather jacket and another man across the aisle offered his help "I know what it's like travelling with children". I remember it all so well! Jonas was so well behaved!

On 28th November, I met Jerald at his practice and he gave us the very best news ever! Jonas's foot was doing so well, that he was happy for us to DITCH the boots!!! I never thought this picture would be the last one of Jonas and his boots and bar, but I'm so glad I took it!

We're now ONE YEAR ON and everything has gone extremely smoothly since our first day in the DTKAFO. I now have a well-rested, happy, running toddler:

 (seemingly a bit drunk when he gets too excited though)

Oh and during that one year... THIS HAPPENED:



New doctors have agreed to follow children using the DTKAFO and hopefully this map will keep growing over the years