Dental devices and braces for kids with ASD

[Anonymous]

My son’s ortho was recommended to us by his OT who said this practice works very well with kids who have special needs. They told us that they had a different type of palate expander that doesn’t involve the long shape key stick that my kid fears and has a lot of anxiety over. We tried to install an expander last year and he wouldn’t have any of it. So this practice told us there’s another option but lo and behold I find out today we’re going with the usual device and he’ll have to let me turn the key every single day. Another dentist we went to require that only three times a week. I am so pissed off and they’re insisting there’s no other option and he just has to do it. I’m going to cancel the appointment. It will be hell otherwise. Before I do, though, is there anyway to get the office to please use the other device? They already have a down payment for me so I would be nice if they could make it work. I honestly feel like I was duped. My kid is 9 and isn’t expecting the awful stick that will make him gag because he’s highly sensitive.

[Anonymous]

Im assuming your kiddo isnt too severe on the spectrum if he can get through dental visits. We try twice a year but my kiddo wont open his mouth and will make himself vomit. Once every 18-24 months we do anesthesia at a special pediatric dentist. Ive basically given up all hope of any ortho, he is also 9. So i guess i have no real advice other than at the end of the day, ortho is optional. I think it todays society we are SO use to doing it almost 100 percent of the time and earlier and earlier. Maybe wait till he is 14/15/16 and can handle it?

[Anonymous]

To the pp, the Window for an expander is short. You can’t do an expander at 14/15/16.

Op - My son had a retainer expander that we turned w a key when it wasn’t in his mouth. Perhaps that might be an option? He could’ve done the more permanent one or the retainer and opted for retainer bc of fears. my daughter’s dental issue required the full expander. I’d ask them about the retainer option and if they say no, call around and see if others can do that on this situation.

[Anonymous]

I’d go to other ortho and get more opinions. We went to several and got very different advice. Can you skip that and just do braces later.

[Anonymous]

Anonymous wrote:To the pp, the Window for an expander is short. You can’t do an expander at 14/15/16.

Op - My son had a retainer expander that we turned w a key when it wasn’t in his mouth. Perhaps that might be an option? He could’ve done the more permanent one or the retainer and opted for retainer bc of fears. my daughter’s dental issue required the full expander. I’d ask them about the retainer option and if they say no, call around and see if others can do that on this situation.

OP here. This is what they had said we could do, so I’m surprised they’re now saying he’s getting the usual one with the key stick. I’d rather he wear it longer than go through anxiety every day. He’s had food issues too, so a device that causes trauma may cause him to lose weight he shouldn’t be losing at his age.

[Anonymous]

We skipped ortho for my autistic child. Have you asked what will happen if he doesn't do the expander/doesn't do braces at all?

[Anonymous]

I just skipped the orthodontist and their recommendations for my ASD kid. Otherwise, they'd rip the appliance out and I didn't want to cause any trauma, not worth it IMO.

[Anonymous]

Anonymous wrote:

Anonymous wrote:To the pp, the Window for an expander is short. You can’t do an expander at 14/15/16.

Op - My son had a retainer expander that we turned w a key when it wasn’t in his mouth. Perhaps that might be an option? He could’ve done the more permanent one or the retainer and opted for retainer bc of fears. my daughter’s dental issue required the full expander. I’d ask them about the retainer option and if they say no, call around and see if others can do that on this situation.

OP here. This is what they had said we could do, so I’m surprised they’re now saying he’s getting the usual one with the key stick. I’d rather he wear it longer than go through anxiety every day. He’s had food issues too, so a device that causes trauma may cause him to lose weight he shouldn’t be losing at his age.

We also did a removable expander for these reasons, including food issues. I would get a second opinion. Where are you? We see Dr Gerlain in Friendship Hieghts after reading lots of recommendations for him here.

[Anonymous]

My son doesn’t have the sensitivity and anxiety issues you have, but he is classic adhd asd in that his attention to hygiene and executive functioning is terrible. We went down the ortho path despite having seemingly pretty good looking teeth. The herbst part was fine but what I am most annoyed about is that no one told me about the excessive daily hygiene expectations until after the equipment was in. How you need to do ten minutes a day of oral care, and once the braces are removed they have to wear a daily retainer for six months plus a nighttime one forever. I told them during the interview process that he is severely adhd. I have no idea why they thought an 11 year adhd boy was going to spend ten mins a day on hygiene and not lose his retainer in the first week. The ortho was like “then this will just have to be on your list of parent stuff every day” to which I thought, the ortho must not have an adhd or asd kid because my list of parenting stuff is already out the wazoo. I practically have to remind ds to go to the bathroom at least once a day. Had I known the expectations, we would have skipped it. Now I’m sure that when the braces come off, he will have severe permanent staining, and that he’ll stop with the retainer in days - which means everything will move around negating all the work. Anyway just something else to think about to make sure you really need this work done.

[Anonymous]

Anonymous wrote:My son doesn’t have the sensitivity and anxiety issues you have, but he is classic adhd asd in that his attention to hygiene and executive functioning is terrible. We went down the ortho path despite having seemingly pretty good looking teeth. The herbst part was fine but what I am most annoyed about is that no one told me about the excessive daily hygiene expectations until after the equipment was in. How you need to do ten minutes a day of oral care, and once the braces are removed they have to wear a daily retainer for six months plus a nighttime one forever. I told them during the interview process that he is severely adhd. I have no idea why they thought an 11 year adhd boy was going to spend ten mins a day on hygiene and not lose his retainer in the first week. The ortho was like “then this will just have to be on your list of parent stuff every day” to which I thought, the ortho must not have an adhd or asd kid because my list of parenting stuff is already out the wazoo. I practically have to remind ds to go to the bathroom at least once a day. Had I known the expectations, we would have skipped it. Now I’m sure that when the braces come off, he will have severe permanent staining, and that he’ll stop with the retainer in days - which means everything will move around negating all the work. Anyway just something else to think about to make sure you really need this work done.

Big hugs. I have a similar kid. It’s so damn hard to floss with braces. I bought these so I could help her floss.

https://www.amazon.com/Fremouth-Orthodontic-Flossers-Braces-Dental/dp/B09K751LL7

Also, because gingivitis is more of a concern with the increased demands for oral hygiene with braces, her dentist is having her come for cleanings every 3 months instead of every 6 months.

[Anonymous]

I'm very mistrustful of orthodontists. One highly regarded one was pushing phase 1 treatment, and I went for a second opinion who said he didn't need phase 1 and may not even need phase 2. We are not looking for perfect teeth for our child with ASD - just to treat any necessary bite issues. Make sure that the provider is looking at the whole child.

[Anonymous]

Anonymous wrote:I'm very mistrustful of orthodontists. One highly regarded one was pushing phase 1 treatment, and I went for a second opinion who said he didn't need phase 1 and may not even need phase 2. We are not looking for perfect teeth for our child with ASD - just to treat any necessary bite issues. Make sure that the provider is looking at the whole child.

I am also distrustful of orthodontists who recommend a palate expander for all their patients. My understanding is that it's need for only certain conditions such as a crossbite.

[Anonymous]

I would get another opinion on the importance of the expander. Is it really needed? I mean, it might not be ideal, but it's possible you could wait and deal with whatever comes if you don't get one.

Our ASD kid was recommended braces, but we decided against it. He didn't have a serious issue and cosmetically, it looks fine. In theory, his teeth don't fit together absolutely perfectly, and that could cause some wear in the future, but I did braces and built-in retainers, and I clenched my teeth enough to mess them up anyway, so I'm not super concerned about his teeth not fitting perfectly. (I will, however, make sure he gets a nightguard very soon.)

A number of kids at his SN private have invisalign, so it seems to work for some. Agree on the point about brushing - it really does take a lot, even with invisalign. I don't think my kid would be that diligent.

[Anonymous]

Anonymous wrote:My son doesn’t have the sensitivity and anxiety issues you have, but he is classic adhd asd in that his attention to hygiene and executive functioning is terrible. We went down the ortho path despite having seemingly pretty good looking teeth. The herbst part was fine but what I am most annoyed about is that no one told me about the excessive daily hygiene expectations until after the equipment was in. How you need to do ten minutes a day of oral care, and once the braces are removed they have to wear a daily retainer for six months plus a nighttime one forever. I told them during the interview process that he is severely adhd. I have no idea why they thought an 11 year adhd boy was going to spend ten mins a day on hygiene and not lose his retainer in the first week. The ortho was like “then this will just have to be on your list of parent stuff every day” to which I thought, the ortho must not have an adhd or asd kid because my list of parenting stuff is already out the wazoo. I practically have to remind ds to go to the bathroom at least once a day. Had I known the expectations, we would have skipped it. Now I’m sure that when the braces come off, he will have severe permanent staining, and that he’ll stop with the retainer in days - which means everything will move around negating all the work. Anyway just something else to think about to make sure you really need this work done.

Something our ortho recommends is more dental cleanings. We went 3 times a year instead of two.

[Anonymous]

We were able to do the retainer palet expander through our dentist. (https://merrifieldpediatricdentistry.com). Its the same device as the one that is glued in, in our case we just didnt glue it in and we turned the key each night then had her put the expander in. That said, it is uncomfortable for them to put the expander in after turning the key so the more they wear the expander the less pain there is after key turns. Also, I believe our dentist has a child with ASD so she has been very patient and good about working with our daughter.