Dental Trauma and "Adjustment Disorder"

The real problem is physical v mental health. Teeth can be a serious medical issue.

I don't envy you. Neglect his teeth and his physical health will suffer. Treat his teeth and the damage to his mental health will be as serious.

It's Hobson's choice and as much as we are feeling it with you, none of us can mitigate that or give you better hope.

The best you can do is MAKE the team understand this.

But most of all, for yourselves, know whatever you do, you do out of love. You are dealt a hard hand and only doing your best. I'm I mum too and I've made some tough calls from a place of love. X

I've reported it so hopefully it will be removed tomorrow when the mods are online.

I hate bots though they're harmless they still give me the creeps.

I wish we were more help I really do. 

Most of all, I wish your team were more clued in. Yes, it has happened before!! Why not print off this post with all the comments and give it to them. We ARE your evidence of what can happen.

The only difference between us and your poor lad is that we can communicate and have some concept of what's going on.

We were traumatised by dental treatment as children. We are traumatised now. 

Believe me, I totally get the dilemma. The treatment is necessary for oral and physical health. But at what cost to his mental health? So much sensory and emotional distress it is unimaginable to anyone who does not experience the sensory world the way we do. He is literally about to go through torture of the type that causes sever PTSD.

I am university educated and fully appreciate why my dentist had to do what she did, but it shattered my whole life and I STILL can't cope with the sensations in my mouth FOUR years on. I rarely melted down until then. Then, suddenly I'm on the brink of it 24/7 for years because I can't cope with the sensory overload coming from my own face. Your poor lad can't even process why? And he'll be ambushed with it. His trust will be irredeemable and he'll live in terror of it happening again. I live with that terror of more medical stuff. It can make you suicidal. 

It's almost like they think they are taking the cat to the vet and it's all going to be over when his mouth heals. It won't be. They need to wrap their heads around this fast and ramp up a shed load of support, big time.

Bless you

Hi, his present phobia results largely from an experience like yours 15 years ago (forcibly anesthetised)  and we strongly suspect that he will indeed never trust us again (and indeed he will probably never fully recover from the trauma) if we allow this to go ahead.

The question is ... What should we do about his teeth? 

Is it better to let him approach middle-age with a mouth full of decayed molars ?

We just don't know.

PT and AT

Hi, Unfortunately our son (the "patient") is a lot further along the spectrum than "a little odd". He is virtually non-verbal, has no concept of "cause and effect" and only a faint grasp of "future and present". If we did tell him then he would point-blank refuse to co-operate and could not be forced.

He is still dealing with the aftermath of some far less traumatic surgery involving milk teeth 15 years ago and still refuses to enter the local hospital for that very reason : which is what promted this request for advice.

Your post reinforces our view that the fallout from this will be life-changing but whenever we raise this with the Multi-Disciplinary team with questions like "Wnat happened to the last severely autistic patient with a mouth full of bad teeth ?"  we are met with blank stares and comments like "Oh! its bever happened before".

So basically, there is no point in telling him becuase he will never understand the logic and necessity but there is no way that we can subject him to the consequnces.

We are still no closer to understanding what we should actually do.

Cheers

PT and AT

Thank you.  The one thing that has helped is knowing now that it's because I am autistic, not because I am bonkers or have a defective personality.  If all else fails, I can comfort myself that my autism gave me some good stuff too.

Oh Roy.  How awful.  I'm so sorry you went through that.

Thanks for the reply...all of the above is a problem.  I am by training a linguist and a trainer, so you can imagine how that upsets me to have my speech effected.  And I may be an older woman now, but I'm still bothered by the appearance and the loss of my sexuality.

But all that stuff is peanuts compared to the sensory torment of my mouth.  I just want it to feel normal again.  When the dentist puts in the plate it's very strange, I can at one and the same time feel instant relief that the gap is filled, but instant unbearable disgust at the plate that holds the teeth.

My dentist is a Special Care dentist, who is very compassionate and patient and she does have some training in autism, is trying all she can.  We realise that part of this is in the proprioception, but also texture and look has a lot to do with it.  I can't as a rule handle anything with spit on it.  I heave immediately.  The sight of my son's retainers in the bathroom as a kid used to make me want to chuck up.  The dentures feel so slimy. It's like having a mouth full of slugs.

I did get them in a time or two, but was sitting on the edge of the bed panting like a dog.  When I did bring myself to close my mouth, the reaction was immediate.  they had to come out.

Thank you

Triker.....yes, I expect you are right that this is a bot or else.....?!...fluke, coincidence....unlikely.

I hate bots.

Yes looks like a bot. Strangely the post doesn't have a spam link. Maybe NAS have finally prevented new accounts from being able to post links.

The bots are becoming more and more troublesome on this forum. There was another similar one on this discussion yesterday.

NAS83515 said:

Are you quite certain this procedure is essential? If it is, then is he not able to understand that having the teeth removed will improve things for him in the long run? [removed by mod]

What is going on here? Is this a bot which has copied the first line of my previous comment?

I'm so sorry to read that, Dawn.

Have you analysed precisely what the problem with the dentures is? If you have been unable to tolerate them in for more than a few seconds that would be difficult! But I can image a range of problems. If they are making you gag, they might go too far back. A dentist might not be thinking outside the box and just assumes a full set is required. But there are two main aspects to teeth. One is eating and the other is appearance (also they can affect the sounds of speech)

For eating you do have the option of only eating soft food and giving up chewing. Extreme, but we do consider extremes that NTs might not. So front only dentures might then be an option, which would not protrude anywhere near the parts of the mouth which cause a gag reflex. Sticking them in might be an issue, as a non dentures wearer I know there are things about them I do not know as my Dad wears them and has had some issues with his which we have discussed. Or just the front molars as also a partial denture.

If you have already considered these things then sorry, but it might be useful for you to discuss less obvious options. Like soft gum dentures, I think that might be a thing? I can ask me Dad if he has any thoughts.

Oh Dawn, this must have been so absolutely horrific for you, I don't know what to write but wanted to still write something even if it cannot express adequately.

No, the sensations are awful and the condition is degenerative. So, it will happen again and they can't do implants.

We just can't get over the denture issue. For the moment they are optional, but next time they won't be.

I hope you're ok, Roy. PTSD is really difficult xxx

Sending you hugs, Dawn xxx

I would echo some of the comments already made and agree that he may never trust you again. Also there is a real possibility that he will feel unsafe in his own home, the one place where he should feel safe. How is he supposed to know that it is not going to happen again without warning. How can he be expected to trust any future visitors to the house, when they might be another anaesthetist.

Does the multi-disciplinary team have an autism trained specialist? The amount of 'desensitisation' he has been put through seems unnecessarily cruel and will likely have made the situation worse. 

The amount of trauma and shock from not knowing in advance is unimaginable. If the procedure has to go ahead I would urge you to explain what is to happen and try to help him prepare for it. 

NAS83709 said:

at least 6 tooth extractions including 4 wisdom teeth

He's going to need pain meds afterwards for a day or two. You should take advice about what to give him but I used a combination of co-codamol and ibuprofen alternating between the 2. Also you can expect at least one of those clots to come out which means regular mouth washes with salt water.

Lets see I think I generally took cocodamol in the morning soon as I got out of bed. Then ibuprofen 2 hours after that then more cocodamol 2-3 hours after that and it cycled like that till my 4th does of cocodomol before bed. The pain from 6 extractions will be pretty bad for a few days.

Unknown said:

I do not think you should change the plans you have made for your son (and congratulations on organising the logistics) but I really do feel that you should tell him; a) what is going to happen b) why it must happen c) what he must expect afterwards.

absolutely!