We've got a plan!

AT LONG LAST! 

This past month has been a rollercoaster! My mind has been doing laps:

- YAY we're done bracing!

- C'mon! You can't stop now! He's not even 2!

- But It's probably best for Jonas to stop if he doesn't need it!

- What on Earth are you thinking?! Brace for longer or he'll relapse?!

- But what if he doesn't?

- And what if he DOES!

- But his foot is PERFECT!

- Says every CF mum ever 6 months before their child relapses!

- Arrrrgh!

- Told you so!

- But...

- DON'T go there!

And obviously, Jonas was totally oblivious and far more interested in bouncing about like a bunny! (As you do...)

On 17th March, we had a Skype appointment with Jerald, another full check-up to check on dorsiflexion, external rotation, general flexibility and gait. As always, everything looked perfect, so we "only" needed to discuss getting the next brace or not.

The difficulty for us was that Jonas had been in boots and bar for almost 5 months before getting the DTKAFO. There's no way to know whether or not those 5 months matter or not for Jonas's future.

Typically, the DTKAFO/Cunningham brace is worn straight after casting until the child outgrows the 2nd brace around the age of 2. In our case, stopping now would mean that Jonas only wore it for 15 months.

There is absolutely no data on children starting the brace later as... hum... Jonas is one of the first few to have done it. And the little data gathered over the past 13-14 years by Jerald Cunningham really isn't enough to try and predict what will or will not happen to Jonas. Either way, as we know, clubfoot is an unpredictable condition so decisions have to be taken in the present, for the child's best interest.

Claire, the physio, and the local orthotist we met through her, didn't really want to share their opinion with me. They agreed that the Ponseti bracing schedule wasn't based on any research proving that 4-5 years of bracing was better than 2, but they didn't feel qualified to advise me as to what was best for Jonas, using the DTKAFO. Alex, the osteopath, felt that bracing longer in our situation and with our brace couldn't be detrimental for Jonas. Other CF mums I talked to privately were confident that whatever the decision I took, I would always find a way for him 💖

Talking to Jerald, I felt a lot lighter knowing that we were in good hands. Our current brace was definitely getting to the end of its life. Jonas was starting to get a slight red mark on the outside of his foot from the foot piece becoming too narrow and the plastic spiral hadn't held the reset very well over the last month and was back to being very stretched, after its patch up in February. Jonas had got so strong that it only held his foot at about 20° external rotation.

The low quantity of data on the Cunningham brace didn't bother me when we first got it, because, to me, boots and bar meant night time wake-ups with a distressed baby and spiraling into depression at the thought of tethering his feet every night for 5 years, whereas jumping into the unknown and trying this innovative brace was a way of getting my happy baby back and letting this bracing business take second place in our night-time routine. The threat of the ATTT surgery is always on my mind. However, the self-reported relapse rate with the C-brace is around 10% and according to Jerald Cunningham, casting is usually enough to stop it and reset the correction. Comparatively, to me, the Ponseti method felt a lot riskier.

This time, I don't have any date to lean on to. My husband and I just want the best for Jonas and there's no way to know whether bracing for longer or not will be beneficial to him. Jerald agrees with Alex that indeed, it can't be detrimental, and that's kind of as good an opinion as we can get, really!

So that's it, then, let's get the next size up!

1st Osteopath appointment

Soooo... On 14th March, I met Alex Green at Bolton Osteopathic Clinic. Jonas had first met him when he was about 3 months old and in full-time boots and bar. At the time, I was worried about his hips and knees and wanted to make sure everything was in order. This time, I wanted a new full check-up for Jonas and to discuss a post-bracing treatment plan.

Clubfoot doesn't stop at 5 years old. Clubfoot doesn't really care what age you are. And Clubfoot cannot be cured. Yes, some people are born with it and are lucky enough to simply forget about it as they grow up, because casting and bracing have been enough for them. However, it is thought that 30 to 50% children will end up needing a tendon transfer after 2 years of age (https://www.orthobullets.com/pediatrics/4062/clubfoot-congenital-talipes-equinovarus) and relapses after 5 years old do happen but don't seem to be typically recorded.

Dr. Ponseti agreed that clubfoot was probably genetic, but had this thought that maybe the gene causing it would "switch off" around the age of 4-5, once his treatment plan stops. After 2 years of reading other children's stories and talking to other parents, I simply cannot believe it. I absolutely wish with all my heart that Jonas's foot remains as perfect as it is now for the whole duration of his life. But since the resurgence of the deformity is thought to be linked with growth spurts and the boy grows like a weed, I intend on being proactive and on teaching him how to take care of his foot.

From the research shared on the Clubfoot Resource Facebook group, it seems that holistic treatments might be the way to go. We're talking of osteopathy, chiropractic, physiotherapy and taping, as well as e-stimulation. Because they look at the body as a whole, osteopathy and chiropractic understand the need for the full lower limb, from hip to toe, to be in perfect alignment with each other in order to maintain a clubfoot's correction.

I'm pleased to report that besides a slight tightness in Jonas's left hip, Alex found him in perfect shape, from top to toe! He was really amazed by the perfect shape and mobility of Jonas's left foot and asked to have a look at our brace. He looked properly mind-blown by it:

"It just all makes sense! 

You'd only need to sit and think about it long enough to come up with it!

It's genius!"

I told him about our dilemma, I was still very undecided, one of my fears was that we would continue to brace and cause Jonas damage in the process. I've read so many stories of children bracing till 4-5 with the boots and bar and relapsing within 6 to 12 months, that I came up with a little theory. A pretty unpopular one I expect, but here it is: what if bracing for longer was NOT the solution? What if it was, on the contrary, part of the PROBLEM? 60-70 years ago, when the Ponseti method was invented, it was thought that if you had a sore back (or ankle, or wrist, etc.), your best bet was to immobilise it, until it wasn't sore anymore. Nowadays, it is common knowledge that you should, instead, mobilise it as much as possible in order to strengthen it and prevent any further pain. In that regard, how does it make sense to immobilise children's feet for a full 2.5 years out of 5 years of life?

What if the brace acted like a back support? You're doing great so long as you wear it, but the one day you take it off and go lift up a couch you break your back? I just can't shake off the idea and it scares me.

That being said, our brace is totally different, being dynamic and with the way it attaches to the thigh, the spiral being shorter than the tibia, it offers a resistance to the child, engages the calf and ankle and, as it stretches the foot into the corrected position, it strengthens the calf and teaches the child how to best position their foot when active. I know all that. I do. I just needed a professional opinion on it and until now, nobody I'd spoken to had actually looked at the brace and the way it's made and given me an answer.

Well, Alex did. After studying the brace and looking at it on Jonas, he concluded that the way Jonas's foot is today and the way he can move it practically like his right foot stems from our brace, and that its dynamic design, he can't see it being detrimental to Jonas, if we brace for longer. According to him, since there's no way to predict the future nor whether Jonas is likely to relapse or not, be it in 1 year or 10, using the DTKAFO an extra year won't do him any harm. And he's happy to see us regularly to check up on his mobility and prevent him from tightening up.

What a relief!! At last, someone took the time to listen to me and answer my questions in all honesty!

Next step was our appointment with Jerald on 17th March. Just a few more days and we'd finally have a plan.

Still debating!

It's so tough!

I'm sorry for not updating you earlier! My mind keeps going from one option to the other:

- It's safer to brace for an extra year, then I wouldn't have to worry about a thing! But that's selfish isn't it? I NEED to make our decision in JONAS'S BEST INTEREST, not mine.

- Bracing can be so tough with the boots and bar for ex. and I really wouldn't want any child bracing longer than necessary for them. Jonas has easily accepted the Cunningham brace, within 2 minutes of having it on, he seemed to already have forgotten it was there. However, does it make it right to keep bracing after being told that he doesn't need to anymore?

I decided to ask around what other people's opinions were:

- friends and family are not necessarily well-versed in the subject, but seeing me worry about it, most seemed to "agree" that an extra brace would be/feel safer.

- the physio we see privately, Claire, is mostly interested in finding ways to strengthen Jonas's leg and she feels that maybe we would see even better results if Jonas didn't have his brace anymore as the strap running just above his knee has left a thinner imprint on his thigh. She won't comment on whether or not we should keep bracing, but does agree that his foot flexibility and mobility are both excellent.

Running laps in the kitchen!

- following one of Claire's suggestion, I met with a local orthotist. He'd never seen our brace and initially thought it was just a removable cast. I explained to him how it works and showed it to him on Jonas. He then watched Jonas walk and run with his shoes on, then barefoot and was really impressed at the way he seems to use both his CF and his non-CF equally, actually preferring to use his clubfoot when climbing stairs up. He then had a good feel of his bone alignment and checked his flexibility intently. I got a shock when he concluded:

"There's absolutely no sign of talipes left in his foot, his flexibility is close to his non-CF's and that's really amazing for a CF. The shape of his foot is also very similar to his non-CF. I can't help with the decision of bracing or not. However, I wouldn't have any worry whatsoever about him relapsing. If you did want an extra brace, I don't see the point of getting an over-the-knee one again, you could get a short one focussed on stretching the Achilles tendon, but as I say, I wouldn't think it's necessary."

- I booked an appointment with an osteopath next week for yet another opinion and will have a Skype appointment with Jerald soon to (hopefully) come to a final decision.

The face that makes it all worthwhile

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!