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