Thursday, April 05, 2012

braces and the sensory child

(a sister's touch makes everything better)

so, over a month ago now, ashlyn started the process of getting her appliances put in and bracket cemented on her teeth. i'm not gonna lie, we thought this day would never come since she had so many other hurdles to jump through to get to this point (the wait is only downfall of having ortho done at a teaching hospital).

getting braces can be so very overwhelming even for kids without sensory issues, so it was no surprise that we would run into some challenges with our sensory-sensitive child.

i felt like the day would never come that we'd finally be at this stage, since we started the process of getting to this point almost a full year ago with a few dental appointments to correct some minor dental issues first, then did impressions, then we waited about three months for them to come up with a plan. you can read those back-stories here and here, if you're bored out of your mind.

around the first week of march she got her palatal expander and lower lingual holding arch cemented in place, but they didn't activate the expander that day. they wanted to give her a week to get used to the appliance being in her mouth.

never seen a palatal expander? it's quite an intrusive piece of metal taking up, oh, about 1/2 of the space in the roof of your mouth. well, let us just show you.

looks so barbaric, yes? i'm telling you what.......the first week, the week we referred to as "hell week" was rough. i'm told it's rough for even for kiddos that don't have sensory issues. every single thing she tried to eat, even mashed potatoes, would get stuck. then she'd panic. then she'd cry. then she'd refuse to eat. every single meal, every single day, until we went back the following week. she lost weight, her sensory issues magnified, it was awful.

her nightly pills got stuck. her chemo pills got stuck. it was a hot mess.

the only thing she looked forward to was eating a giant bowl of chocolate icecream every single night. and taking crushed pills instead of whole.

we went back to the ortho one week after it being cemented in and spent the entire hour appointment trying to discuss how to help her not give up, and trying to convince her that it would just take time. so instead of activating the expander after one week, they gave her christmas tree brushes to push out stuck food, they gave her tips on clucking her tongue against the roof of her mouth to release the suction, and they convinced her to keep it in one more week without any activation and think about it for another week.

we left that appointment with only a twinge of hope and still full of stress from dealing with so many meltdowns the week prior.

but........i'm here to tell all you mom's out there going through this (sensory kiddos or not), that if you can just make it to day 10, you'll round the corner and every little thing will be okay.

the second week she added waffles to her icecream only diet and became even more obsessed with eating waffles than she was with eating the chocolate icecream. i'm telling you, my husband and i have made more waffles in the last month than we have our entire marriage.

waffles for breakfast, waffles for dinner, waffles for snack. i'm so sick of smelling waffles, LOL.

so we went back the next week and she was a completely different kid. while the sensory/anxiety stuff didn't completely disappear, i could tell she was finding her own way to deal with this new normal.

week 2 they began cementing brackets on and adding the wires & bands onto her upper teeth and then she was all smiles. she chose purple and green bands to represent, get this......the Incredible Hulk. LOL.

and then, we started turning the key. every morning and every night. i was most nervous about this stage of the game because with each turn of the key her jaw was being forced to expand causing lots of pressure in her cheekbones, sinuses, etc. she was nervous about this part too because of all the conversations with the orthodontist, all she remembered was them telling her it was going to hurt.

but, then.......dr. stephenie made her day and told her she could chew gum! and if you thought she was obsessed with gum chewing before, you should see her now. never without gum.

AND........i'm SO very thankful to say that we only had a few days of her asking for pain medication and never once did i have to pull teeth to get her to cooperate with this key turning thing. seriously, God is so good to me! because after the last 6 months of stress that i've been through with lots of stuff i haven't yet blogged about, i needed a break.

every time i turned that key with her full compliance i felt like God was giving me a big 'ole hug and whispering in my ear "every little thing is gonna be alright."

and, somewhere in that week she learned she could eat nacho chips with beef and cheese on them. that realization allowed her to brave adding other favorite foods back in. and while they still get stuck, the anxiety over it isn't really there anymore. girlfriend figured it out on her own.

and our whole family breathed a deep sigh of relief that she was pleasant to be around again.

so after just a few days of turning that expander key, you start to see the magic happen. that gap you see in the picture up there--it appeared, like, overnight. mind boggling.

each morning, and each night, we continued turning the key, until 2 weeks later and it looked like this...

we were initially told that they would expand her jaw for 3 months. yes 3 solid months of turning that key every morning and every night. how big was this gap gonna get!? could you imagine?

but, after two weeks they were so impressed with how well her body is responding that they told us just one.more.week.

so the gap is slightly larger than you see in that picture, but after just three weeks of consistently turning the key and only missing ONE morning (go ME for consistency!), we were told she could stop turning the key and now we just hold the expander for 3 months.

and we can graduate from weekly visits to once every 4 weeks. hallelujah! (it's not typical that frequent, but her sensory issues were a game-changer)

BUT, next visit, they will start closing the gap already and keep the expander in so it doesn't collapse. what's happened is they've opened up (basically broken) the upper palette and new bone will fill in the space they've created.

the body is an amazing machine, isn't it?

any other moms out there going through misery with ortho right now? (((HUGE HUGS))) to you...and sending an extra dose of patience your way. :)


  1. we went through the expanders/braces with Thing 1 but no key....I was just talking to someone about THing 2 and the thought of him needing the same things. I truly can't even wrap my head around it especially since his visits to the dentist are time he flipped out of the chair and hit his head and it was just chaotic...the SPD will only kick it up about through it! I can only imagine!!

  2. I was typing way too fast...the SPD will only kick up the anxiety up about 100 but I just know that the dentist will be talking to us next month and i dread it so...especially because they are taking care of kids teeth at much younger ages these days. Thing 1 was in and outta braces all while still in elem school! 2 years and we were done!

  3. Oh wow! It looks like some kind of medieval torture device - your poor daughter (and poor you!!) but YES, our bodies are AMAZING!! Hope you all get through this...

  4. i just got my expander and im really worried about that huge gap.. do they put braces on while the expander is on?

  5. i just got my expander.. and im really worried about that huge gap. once the gap gets bigger do you have the expander AND the braces on?

  6. will do jus fine. I was worried for her when she first hot hers because kids can be cruel but the gap didnt cause her any undue stress and absolutely no ridicule from friends at all. It does open quickly changes a lot overnight. Then it opened and it stayed that way for a while until they made adjustments to close it back up. It closes rather quickly and once closed they take the expander back out and leave the braces on for final adjustments. Totally worth the short amount of time with a gap to not have to have your jaw broken reset and wired shut for 6-8 weeks down the road. Good luck. :)

  7. I am so relieved I found this blog! My son (11) needs the same treatment as your daughter. I have some questions and I am wondering if you would be willing to guide me via email. I am desperate! Thank you

  8. Momof6....ABSOLUTELY! email me taniawillis *at* columbus *dot* rr *dot* com (typing it that way to hopefully avoid some of the spam bots. :)

  9. Thank you for sharing your experience with this. My 10 year d daughter just got her expander yesterday. She’s been very emotional and a bit scared trying to adjust to eating and talking with it. I just read your article to her and I can tell it’s given her more confidence and encouragement that she’s going to be ok. We’re counting to day 10 together! Thank you for lifting “both” of our spirits...your awesome!!

  10. Thank you for sharing your experience with this. My 10 year d daughter just got her expander yesterday. She’s been very emotional and a bit scared trying to adjust to eating and talking with it. I just read your article to her and I can tell it’s given her more confidence and encouragement that she’s going to be ok. We’re counting to day 10 together! Thank you for lifting “both” of our spirits...your awesome!!

    1. good luck to both of you! it really will be a memory of the past before you know it. if she ends up having lots of pain ask the ortho for something called a bite wafer. it is a hard wafer a little bigger than a quarter that she can bite down on to help relieve the pain and pressure in her jaw/cheek area. most orthos won't agree to allowing the kiddos chew gum but ours was at a pediatric hospital and they were awesome about it as long as it was sugar-free. the bite wafers are wonderful too though. i hope you find your rhythm with foods she likes and she learns to laugh at her new way of talking with the appliance in her mouth. take lots of photos so she can look back and see the transformation. my daughter's smile is magical now!

  11. I am a 15 year old girl and I have a crossbite on my bottom teeth so I have to have an expander on my top teeth like your daughter. I am really nervous to agree to the treatment because I quite a lot older than your daughter and kids can be a lot meaner at my age. Although I have a crossbite on the bottom my top teeth are really nice and straight, I can't I imagine voluntarily putting something in my mouth to force a massive gap in between my only lovely teeth. Do you think it is worth having the treatment? How long do you have to have the gap in your teeth? I am so nervous...

    1. So sorry for the delayed reply. for our daugjter it was so worth it. She had two phases of braces. The first phase was to fix the cross bite and open bite with the palette expander and then those were taken off and we waited a year for all of her baby teeth to fall out and molars to grow in before putting the second set on to straighten everything up to perfection.

      Had we not done the palette expander we would have had to put her through an extensive oral surgery that would have required both her upper and lower jaw to be broken and bone from her lower jaw to be removed and resectioned to her upper jaw to make it larger. This requires the jaw to be wited shut for 8 weeks afterward. A palette expander is much less barbaric and MANY kids, even at 15, 16, 17 and 18 are in braces so you wont feel alone.

      The gap that the palette expander creates stays for a very short period of time...2 weeks max. Then they start closing it.

  12. I know this is a while ago- but curious how she did while getting it put on! Just had our evaluation today and we need it in about 6 months. My Son is 6 but his teeth exploded early!

    1. Putting the braces on was the easy part! If your son has sensory issues, I would suggest taking sunglasses to allow him to wear to keep his eyes from watering due to the bright light they have overhead. Also, ask if they have a weighted blanket they can lay across his lap and legs. If they dont, ask if they can use the x-ray protective vest. Those are weigted and provide comfort and a secure feeling to kids who have sensory issues. If he has anxiety, I recommend taking a small handful of playdoh or sensory putty that he can fidget with in his hand while they apply the brackets to help keep him distracted...or even his favorite stuffed animal/toy. Comfortable clothes are a must. Ibuprofen around the clock for the first week (or more) depending on his discomfort level. Soft foods are a must for the first few days as his mouth/jaw will be tight and sore the day they get put on and every time he has a recheck. Don’t leave without getting plenty of wax for any brackets that may feel “pokey” to his cheek or gums. At that age, your biggest battle will be helping him keep his teeth properly cleaned.


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