Decision time...

The past week has ended in a blur of questions and uncertainties and we're kind of still savouring the feeling of knowing that everything is going so perfectly with Jonas's foot.

We got his brace back on Friday, all pimped up 😂 It looked so tiny! I hadn't realised how stretched it was. Jerald "reset" the plastic spring and added an elastic band at the side to prevent Jonas from stretching it back too quickly. He also added a layer of spring steel under the foot piece.

I was a bit scared to put it back on, thinking that maybe the extra stretch would bother Jonas after 4 nights of total freedom. He surprised me once again: absolutely unphased, he had a wee play with the elastic band before I put his PJs on, then went out like a light! Waking up with a smile 12 hours later. I feel he'll simply never stop amazing me!

My husband and I discussed our options over the weekend, between keeping the kids entertained, working and studying. It's such a tough one!

- I trust Jerald when he says he thinks Jonas could be fine if we stopped bracing now. I trust him when he maintains that 2 years of bracing with his brace should be enough to make our little one's feet perfect. However, Jonas has only been in the brace since the end of November 2016, that's only 14.5 months and I can't help wondering whether missing out on those extra months could mean that we're not as safe as if we'd started bracing with it straight after casting.

- Jonas is growing extremely fast, he'll be 2 in April but already towers over children older than him and despite the 3 years difference there is between him and his sister, I feel he'll probably catch up in height within the next year (he's only 12 cm shorter!). The big growth spurt between 2-3 yo scares me.

- The Ponseti recommendation is to brace till 4-5 yo, but all research done till now only ever involved a  2 year bracing period only, leaning that the decision to brace any longer isn't actually research-based.

We've decided to take more time and discuss our next step with more professionals before making our final decision.

Double check-up

What a week!!

Jerald Cunningham announced a few weeks ago that he'd be passing by London on his way back from Kenya where he was collaborating with CURE International: he travelled with his daughter with he aim of training/retraining a medical team to the use of his brace, checking-up on little patients he'd met a couple of years ago and fitting new patients.

The decision was easily made, we packed the kids up for a weekend to the capital. My almost 5-year-old daughter was desperate to meet Paddington bear so this was the perfect occasion!

Monday came and with it our appointment with Jerald and Sam at the London Orthotics Consultancy office in Kingston. The scariest part was "tubing it" with 2 young children, but I'm pleased to report that both Abigail and Jonas were absolutely perfect (thankfully - or not (I'm not too sure the secretary agreed) - they waited to get to the reception area at LOC to turn into crazy little balls of energy 😅).

Whilst we were waiting for our turn, we met a few people interested in the brace and chatted for a while about how well Jonas had taken to it and how well I felt things were going. To me, Jonas's foot looks pretty similar to his non-cf. It doesn't feel as dense and his arch isn't as high, but it looks, feels and moves like a normal foot.

Jerald watched Jonas walk (or should I say... run and bounce and stretch up on his toes?) and examined his foot. He was extremely pleased with it and particularly happy to see how well his arch has formed since October. He commented on the fact that he still shows quite a bit of external rotation/overcorrection, meaning that as he grows and things tighten up he should have enough of a margin for his foot to get to neutral but not relapse. He noticed that Jonas is getting to the limit of his brace capacity and decided to keep it so as to adjust and strengthen it the day after our appointment.

He had an important meeting right after our appointment and had to rush, but promised to be in touch shortly.

We got home on Monday night, tired but relieved. We still had to go to Jonas's 6-monthly check-up with our consultant on Wednesday and I really needed this boost of confidence. I just can't help it, I'm always scared to go to our hospital and meet our consultant for check-ups!

Well, we got there, Jonas had a wee play in the waiting area and we got called in. There was a bit of a surrealistic conversation about socks. Jonas had an orange sock and a blue one, which he was proud to wave at us "Socks socks socks!" he said. Luckily enough, our consultant wasn't bothered with the odd socks. Just as well as I simply can not store them in pairs! However, she commented on the fact that apparently, some people are so obsessed with socks that they IRON them???

I really need to ask: where do people even find the time to plug in their iron?? Mine only got out of storage recently and is only used for... Hama beads!

Anyway... let's get back to our check-up! Our consultant seemed really pleased with Jonas's progress and said that his foot looks better than expected based on what it looked like 6-7 months ago (very flat, with a risk of planovalgus). She performed a full lower limb check-up and also appeared satisfied with it. She was also curious to know about our check-up with Jerald on Monday and his visit to London.  I felt our appointment was very positive and we're booked to see her again in August.

I felt we'd had a very good week already and absolutely DID NOT expect to wake up to an email from Jerald this morning. After a short confirmation that the brace was on its way back to me, he stated that Jonas is close to outgrowing it and we are now coming to decision time:

- do we want to size up and brace longer?

or

- do we want to take a break (potentially indefinite) from bracing and monitor closely?

...

2nd Physio appointment

After a lovely Christmas and lots of squatting and stretching on our tiptoes, Jonas was in top shape to meet Claire again :)

We had our 2nd appointment with her last week and she was really impressed with the way his quads and calf muscles have developed in such a short amount of time. He no longer feels the need to step back when coming back up from a squat and the muscle definition in his calf has increased again. 

Our next step is to get him to learn to balance all of his weight on his left foot. He already does it briefly, when kicking a ball or holding onto something, but our goal is for him to be able to hold the position a bit longer and keep strengthening his leg.

This was once again a very positive appointment that confirmed that he's got great flexibility and motricity.

Claire suggested we start using a balance board with him. We don't have one yet and most models are too big for him so we've just purchased a yoga balance pad and expect to have hours of fun with it!

Starting physio

Since Jonas is now on 6-monthly check-ups, even though my mind and eyes tell me he's on track and doing brilliantly, now and again, I still freak myself out: I stare at his foot, try to stretch it, build it up in my mind that maybe it's not as flexible this time as it was last week or I look at his non-cf and feel that his feet look slightly more different from one another today than they did yesterday and obviously, I go into a panic about relapse. It usually only lasts for a few moments, then I take a step back, think about it and calm myself down, because I KNOW it's all going well! However, if you're a clubfoot parent, you know how draining that can be... Needless to say that I'd do anything to free myself from that fear. I decided that seeing a physio privately for a monthly check-up would be the perfect way to give myself a break.

That's why, in October, I approached a paediatric physiotherapist, Claire Irvine, at Manchester Neurotherapy Centre and enquired about her experience with CF children. One of her colleagues is also a Feldenkrais expert and I wanted to have her opinion too as I have been in contact with a mum who uses the Feldenkrais method to fend off CF relapse. 

After a first phone consultation and e-mailing back and forth a couple of times, we decided to meet early December for an assessment.  Claire asked me what I felt Jonas needed help with and I really had to rack my brains to actually find something to say: At 20 months, he was already a proficient walker, a pretty good runner, an experienced climber and the only thing that he seemed to be trying but hadn't mastered yet was jumping! (which my non-cf daughter only managed when she was 2-2.5 yo anyway!).

On arrival at the appointment, Claire and her colleague welcomed us warmly and were immediately impressed at seeing Jonas walk so comfortably towards the treatment room. Once there, we made ourselves comfortable and Jonas, flashing his nappy and bare legs, started to show off his mobility skills. Taking turns, they examined his feet, legs and hips and how he used them, they engaged him in different games spurring him to move this way or that way, to crawl, to get on his tiptoes, to squat, to climb, etc. 

"He moves in such a natural way! He keeps switching patterns! Look at how stable he is! That's really impressive, you'd never know he was born with clubfoot!" 

I was so happy! And so was Jonas! A full hour play with the ladies instead of his nap? 😂

However, they both pointed out that Jonas seemed to lock his knees when standing up rather than making full use of his quads, forcing him to step back to find his balance when coming back up from a squat. They suggested we add games to our routine where we get him to squat down low then stand up high on his tiptoes, the idea being to strengthen both his quads and his calves in the same move. They also found that his tibialis anterior muscle felt tight to the touch and suggested I gently massage it to soften it and make his body understand that it doesn't need to be.

I asked them whether they thought there was anything extra (apart from bracing) that I should be doing to pro-actively prevent a relapse. I asked about stretches and mentioned kinesiotaping. They agreed that stretches wouldn't do any harm and also recommended gently massaging his tendons to keep them supple. They looked very dubious about kinesiotaping though. According to them, he's doing so well on his own, discovering his body and the world in such a natural way, that they wouldn't want to mess with it. The most they would agree on would be to have a small strip of tape running under the metatarsal heads to increase his proprioception but neither of them felt it was really necessary.

I obviously showed them Jonas's brace and they watched him walk and crawl with it on to get a better understanding of how it works and what it does for him. They felt that it all made sense and were very happy to be given the opportunity to watch him and help us out along the way. 

FINALLY!! I feel that I have found someone local to me

that actually approves of our treatment choice

and really cares about him doing well in his Cunningham brace!

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!