If your SEN child has had a tooth cavity, can I ask for your experiences with the dentist

[Jimmyneutronsforehead]

DS is 6, he's never been seen by a dentist, not for lack of trying though. I know dentists are hard to get an appointment with these days but holy shit they're one of those additional hidden barriers when you're trying to access specialist support for your disabled children that nobody talks about.

We've been waiting almost a year to be seen by the community autism specialist dentist.

The cavity has grown. It's gone from barely noticeable to a really big gap in his molar, and you can see a black space at the back of the molar, but it's pretty hard to glimpse at unless you catch a rare moment where he's willing to open his mouth wide.

He's not in any pain, he's no red flag signs, so of course I don't expect it to be treated as an emergency, but I have been trying to get his case re-triaged, and not been successful as it's such a phone labrynth with every number I call telling me that they're not responsible for triage and to try the next number, and the next. That's a gripe for a different thread. I'm sure anybody who has been through this knows just how hard it is.

Anyway, after my umpteenth attempt I managed to secure an appointment coming up in December.

I know that he won't be able to cooperate with verbal instructions though, and no amount of prepping, social stories, videos, songs, or pictures will stop him from panicking when we actually get there.

Oddly, he loves a good trip to the doctors or the hospital, but he naively thinks a plaster or a bandage is how we treat illness and ailments, because he's fortunate enough to have never needed any sort of invasive medical intervention.

The reality has hit me now that the appointment has materialised that he won't understand what's being asked of him, and he will need some invasive medical intervention, and neither of us have any experience with this.

So, can I please kindly ask, if you've been through this with your SEN child, what was the experience like, how did the dentists reassure you and your child, what sort of pain or aftercare should I expect to do at home, or expect as a follow up anddid anything help with preparing your child particularly if they're non-verbal or significantly speech delayed?

Thank you so much!

DS1 and DS3 both see the special care community dental service.

They have lots of appointments in general, so we don’t do lots of preparing with them beforehand beyond telling them where we will be going/who we will be seeing. I am not sure lots of preparing would help them, anyway. They both have a hospital passport and the dental service has a copy of them that is followed.

We don’t wait in the waiting room. We have the first appointment of the session, so there is less chance of them running late and we wait in the car until they are ready. When they are ready, they call me and we go straight in.

DS1 (complex mix of physical, medical, developmental and psychological disabilities) is a teen now. Before his appointments, I send an email with a medical update. This means time in the appointment doesn’t have to be spent on those discussions.

DS1 has never sat in the dental chair and absolutely nothing goes in his mouth during dental appointments (DS1 is a biter). DS1 remains in his SN buggy. When he was younger/smaller, he would sit/lie down on my knee. There is no pressure to sit in the chair, open his mouth, do anything, etc. It is about slowly building a relationship and catching glimpses without the pressure to comply. The dentist doesn’t bat an eyelid at DS1 growling or being hit and kicked if they get too close. (I feel terrible about them being hit and kicked, but like other HCPs, they reassure me it is OK and DS1 is never treated worse for it.)

When DS1 has general anaesthetics for other medical reasons, where possible, he has a thorough dental examination, scale and polish and any work (sadly he has needed a lot) whilst he is under GA. It is the only way to get a proper look at DS1’s teeth and mouth or do anything. DS1 takes pain medication anyway, so I can’t help with that question.

DS3 (ASD plus a few co-morbidities and some medical needs) does now sit in the chair, but didn’t in the past. Previously, the dentist would examine him very slowly as the opportunity allowed whilst DS3 built Lego on the floor - a new set; I’m not averse to bribery as a distraction for that type of thing. Appointments are longer than a general dentist appointment and the dentist is more understanding. The dentist explains every step before doing it. We have a written step by step process of what will happen at each appointment.

He has had a couple pieces of work done under GA. Before those, the dentist explained every step of the procedure to DS3 in writing with diagrams/pictures. DS3 has some medical needs, so the procedures were treated like procedures for his medical condition are. We just gave paracetamol afterwards. Follow up was a normal appointment afterwards.

If your DS is admitted to hospital for treatment under GA or sedation (depending on the procedure required, the individual’s needs and the service, some can offer sedation in some clinics without a hospital admission) some things that might help are: a hospital passport. a cubicle, being first on the list if possible, a visit beforehand, meet the play team, a referral to a play therapist if possible. If it is via a day ward, arriving at a slightly different time to other day cases, so you avoid the busiest period.