Of A.F.O’s and Tooth Decay

Carys's AFO's look much like these...
Carys’s AFO’s look much like these…

All this week, Carys and I have been ‘coping’ with her new A.F.O’s. A.F.O’s are not to be confused with U.F.O’s, although lately, I’ve been wondering about that… Useless F…ing Objects, I think, is the more appropriate terminology.

For the uninitiated, A.F.O’s (Ankle Foot Orthoses) are little plastic leg braces which hold the wearer’s foot in a better position than they are naturally wont, providing support and good posture. They are supposed to help with walking. That’s if they fit the child’s foot. And if you can get a shoe to fit the brace. Doesn’t sound so difficult, does it? 

Carys has been wearing A.F.O’s since she was three years old. Initially, I was very excited. I mistakenly believed that we had found the magic key which would get her walking. Months turned into years, and we are no nearer that goal. Carys’s ankles are stronger, but she still has pronation, low muscle tone, and zero balance.

One day last year, I noticed that she was sliding her feet back inside her old A.F.O’s and walking on her tip-toes, but unless you knew that, you couldn’t tell. I could, because although I’m not an expert in physiotherapy, I am an expert on Carys. Her teachers and PT took some persuading; she went months in a pair of walking boots while I tried to convince them.

Meanwhile, the tip-toe walking continued, in shoes and bare foot. Then I noticed that when she moved from tiles to carpet, she dropped down from her toes and walked across the rug normally. Back onto the wooden floor, and immediately she was on her toes, light as a ballerina.

Could it be a sensitivity issue, I wondered. (And then went on-line and ordered ‘The Out of Sync Child’…)

A few days later, my eyes fell upon a pair of fleecy insoles whilst out shopping. I bought them, cut them down to size, inserted them into Carys’s shoes, and took her walking. Within three steps, she was walking as normally as you or I.

Then the new A.F.O’s arrived. Simple, I thought. Just strap ’em on and away we go.

Not so. After an hour, Carys had red lines running up the inside of her legs to her knees, and big red indentations on her ankles.  The marks looked like the gruesome trail of a previous , very bad surgery. I took them off her in horror and phoned to arrange a reassessment. And with the big wedge foam heel they had added to try and stop the ballerina act, it was now impossible to slide the brace into a shoe without going up four sizes.

Carys has enough difficulty trying to walk without all that added into the mix. Meanwhile, the PT phoned, insisting that Carys must ‘tolerate’ the braces for a couple of hours a day, if that’s all she can manage. Well, what’s the good in that? If she needs the support of a brace at all, she must surely need it for more than two hours a day. Besides, if she experiences any pain or discomfort whilst walking she is quite likely to refuse to walk at all, and then all our hard work will have been for nothing. Either that, or she’ll be crippled for life. I can’t allow that to happen.

Today I took Carys for her annual check up at the special needs dental clinic.  I wasn’t concerned. Why should I be? She doesn’t eat any of the ‘crap’ that ‘normal’ kids eat… she can’t.

Carys opened her mouth wide… and screamed as if she was being murdered for the duration of the appointment. The dentist didn’t touch her, or insert any kind of torture device… I mean, dental instrument into her mouth, but Carys screamed anyway.

The good news is, the dentist got a really good look at her teeth. The bad news is, she has two teeny tiny cavities on her two front teeth. Her adult teeth. She needs them filled within the next six months. And the only way to do that is with a general anaesthetic. Which she can’t have on account of the gravity of her heart condition.

This type of procedure can only be done at the big children’s hospital in Crumlin, Dublin, where the dental department must now liaise with Carys’s cardiologist. And any other of Carys’s doctors who would like her to have tests/ procedures done whilst she is under anaesthetic. Because Carys’s heart is too bloated and weak to risk unless it’s absolutely necessary, and so, many procedures have been shelved awaiting just such an opportunity.

I can feel my blood pressure going up already.

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10 thoughts on “Of A.F.O’s and Tooth Decay

  1. Cavities can also be the result of not enough saliva when a person sleeps. So can you put fleecy socks under the braces so they won’t irritate her skins as much? I’m with you, if they irritate her skin, why torture her. 😦 Can she have laughing gas with her condition? Or do your dentists there even use that? I’m so sorry you have so much on your plate. *HUGS* to you and Carys! ❤

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  2. We had Afos for a couple of years while Jay got onto his feet – they do look very uncomfortable, but not as uncomfortable as when my brother (a consultant anaesthetist) looked after him one morning and put them on the wrong feet. Little and often is better than not at all, we still have shoe inserts but Jay just takes his shoes off and removes them whenever we try now.
    We also had some big dentist work last year – 9 baby teeth removed. It’s all horrid at the time, but we get through it and things gradually improve. Thinking of you both.

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    1. Thanks Steev! Ha… I’ve put them on the wrong feet once, during the morning rush to get ready for school lol! Its easily done!

      Poor Jay… nine teeth removed all at once ? Wow! You’re right though… its all horrid and stressful at the time, but we get through it. Somehow!!!

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  3. Oh gosh Ali, hugs! That’s way too much to have to keep track of and think about on top of all the concern and stress you must be going through. I agree with you about the braces… why on earth is “tolerating” them acceptable? This is not like Allegro having to tolerate booties while in Tucson until he gets used to them because his paws are going to get too hot. Allegro thinks the booties are weird, but he’s not in pain! If they’re physically hurting her, I’d think something else is going on like they’re the wrong fit, and the response shouldn’t be a callous “Just make her deal with it.” Goodness that makes me mad. Good for you for standing up for Carys on this one. It’s great to have physical therapists and the like but sometimes it’s like they are incapable of listening which puts me in bafflement. Comfort and normalization don’t always go hand in hand either, but in my opinion the former always trumps the latter as long as what is comfortable is also medically sound. It reminds me a little bit of how kids used to wear really painful leg braces instead of use wheelchairs because the braces made them look normal. When they grew up and learned about the wheelchairs, they abandoned the normalizing prosthetics which didn’t help their independence in favor of the less normalizing chair. Of course these were paraplegics who did not have all of Carys’ difficulties. Still the point I am making is independence and what is best for a person are both sometimes and maybe even often not correlative at all with what looks normal. Good on you for pushing back against the system, though I have some experience of how exhausting and hopeless that can feel. If they’re betting on you settling then they’ve met with the wrong person. 🙂

    Random question: Just wondering if Carys has any light sensativity? It occurred to me that dentist offices might have a lot of nifty lighting that could maybe really bother her and account for her screaming. But as I never see the lighting when I go get my teeth done I should add this is complete late night speculation.

    I’m sending energy for you and her for the best situation and outcome regarding anaesthesia. I’m there with you in spirit.

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    1. Thanks Éilis! Sometimes I think that because Carys doesnt have a voice no one wants to listen. We are trying out the Afos for an hour a day. The school nurses are monitoring her, and the marks, to make sure they fade and dont hurt. I’m watching Carys’s reaction and taking my cues from her. She is not averse to wearing them and is not showing signs of pain. I noticed that when walking in her walker she keeps stopping and lifting one leg while she rests. As she seems happy enough, I think maybe they feel strange to her, possibly a bit tight, rigid or uncomfortable, but not painful, so we’ll see. Meanwhile, I am seriously thinking of getting a second opinion from a private consultant.

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  4. So, what did the PT think about the success of the fleecy insoles?

    I put moleskin on the irritating edges and rivets on the “Scottish Rite” brace my son had to wear.

    Cavities are not always due to eating the wrong things, or inadequate oral hygiene. Sometimes they’re a consequence of medication side effects. I wonder if there is an oral antiseptic that Carys’s care team would prescribe, to swab her front teeth and gums, which would slow down further bacterial decay activity while the logistics of her future care are worked out.

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    1. Actually, I don’t think the pt is too impressed with any of my observations or suggestions. I guess I am only a mom…

      Seriously though, this is one of a series of small incidents which has resulted in my losing all confidence in her. I think its time I arranged a meeting.

      That is a good idea about the oral antiseptic, I will check that out. Thank you!

      Also, I think you can get pressure relieving pads for blisters and foot sores and such, which might be worth a try on her inner ankle where she keeps getting the indents…

      Thanks for your comments and advice!

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