Pls help-tooth ache-autistic DD-emergency

[FlyingTigger]

Can anyone please advise me?!

My DD is non verbal and autistic. She’s been in absolute agony last few days. Taken her to the dentist she’s registered with but dentists says can’t see her as my DD is very distraught and won’t sit for the examination. Says she can only prescribe medication so we’re given antibiotics and buy Calpol (I knew this would be futile as she absolutely refuses to take these and will taste them in her food!)
dentist has made referral to community dentist/specialist but she tells me that’s a two year wait
we’ve gone to a private dentist today and paid close to £500 for a consultation and another next week with the consultant. Confirmed extraction is needed as the teeth are quite badly decayed.
problem is we’ve been quoted £7-8,000 AND we’re looking at the end of November!
My DD can’t wait any longer. She’s hanging her head on the floor in agony, screaming, scratching and I can only imagine how much pain she’s in

Surely there must be another way??
I can’t fathom how painkillers that she can’t take is the only solution until we can pay the £8k or wait months.

If we go to A&E what’s the outcome?
Is it worth trying different dentists?
Is the price quoted reasonable for the removal of 8-10 teeth?

Take her to A&E for help with pain management, but be prepared that if they fail to get any oral meds into her the other options are more invasive (rectal paracetamol, IV pain relief and antibiotics for example). Does she take any oral meds normally? Community dental may be able to put her in as an urgent case due to her SEND needs and pain if you speak to them or the dentist does to push her case, but they won't do it if she has an infection as it could spread into the open sockets post-removal, there is bone underneath, you really don't want to get an infection in there.

Are there any forms of painkillers she can take?

The liquid ones can be mixed with other liquids, tablets I used to put in pieces of banana.

If there is an infection they won't do anything until she has taken antibiotics anyway?

I know you said she is non-verbal but does she have other forms of communication? Board, makaton etc? Can you explain?

In the meantime hot water bottle or wheat pack on her cheek will help with the pain.

Your dentist needs to refer you to the NHS Dental Hospital. My DD Daughter needed an extraction, we got a referral to the dental hospital and she was seen 2 weeks later.
You (of course) will need to push like every service, we were rejected at first, so wrote to PALS to say I thought that this was not the way to treat an ASD child, and the head of the Dental Service called me the next day.

Thank you to all that have replied; really appreciate it
@Choconuttolata if the pain management options you’ve mentioned is the only way, so be it but what happens after they wear off? Do we keep having to go back for drops etc? She won’t take any meds orally, she just spits it all out!
thankfully she was able to sit still enough at the private practice (all the shiny new toys and the flat screen overhead TV helped!!) and they’ve confirmed no infection so likely it’s the nerve that’s bothering her?

@Octavia64 she wont take anything, tried mixing antibiotics into porridge that was already sweetened with banana and a touch of honey and she literally shuddered and spat it out.
excuse my ignorance but if she didn’t have an infection why did the dentist give antibiotics? I did think what they were for but didn’t think to ask at the time. She’s tapping her mouth and squeelimg and crying with her mouth open in a way she doesn’t normally. The pain also comes and goes and she’s trying to bite onto hard surfaces

@ExtraOnions thanks for the tip- I thought the days of pushing for this and that were behind me now that EHCP is done 😭

Please don't put a hot water bottle on the cheek . That is the wrong thing to do.

Normally when people have tooth pain the most likely cause is an infection.

The first dentist wasn't able to examine her, so prescribed painkillers and antibiotics because that was the most likely cause.

I had a really nasty infection in my back molar and they wouldn't take it out until I'd had a few days of very strong antibiotics.

Incidentally, antibiotics taste absolutely foul.

If you put them in porridge with a banana and a small amt of honey she will absolutely be able to taste them. Mix with a couple of tablespoons of honey and you might stand a chance. (Although not good for her teeth!)

You need to get on to every single person you can in PALS and the NHS. They can see her sooner and they must. Get onto your MP and twitter and raise hell.

My two DS are severely autistic/learning disabled and attend specialist community dentist so when they need a filling or extraction we go to the hospital for anaesthetic etc. So for the future I would definitely get asked to be put on waiting list for them.

Some good advice above for the immediate situation. All the best!

How old is DD? You can get paracetamol suppositories OTC from a pharmacy, or if prescribed, an anti- inflammatory called voltarol- also in suppository form. There might be others too. How have you given her meds in the past?

Clove oil on the area can have a slight numbing effect, but the smell/taste might be too overwhelming if she has sensory issues. I hope it gets sorted very soon OP.

How old is DD? We had a referral to the dentist for anxious patients but he said it was a waste of time for autistic kids especially those under 8 and limited understanding and said we needed to go to the hospital dentist.

I would take her to a&e.

As another poster said in our city situations like like would be referred to the dental hospital as they can use sedation etc to help nervous patients and deal with more complex extraction situations.

I hope she gets some pain relief and you get some help with this.

That sounds terrible. I'm really sorry you are all going through that.

We have used paracetamol suppositories in the past and they are great. The pain relief kicks in much quicker than oral. You need a private prescription to buy them and they are expensive but very good.

Our DS will take effervescent paracetamol in diet sprite, but maybe not suitable in your situation.

We had to do tooth extraction privately too and it cost a bomb. I must make sure to ask for that to go on the EHCP.

I think I would be going to A&E tbh. At the very least they could produce the prescription for the suppositories. A&E for children is separate from A&E for adults which I think is probably nicer.

Call 111 with all the information you've given first thing tomorrow at 8am. She is in agony and needs an examination and extraction under sedation or GA, I imagine she isn't going to comply any other way.

My older son is 10, autistic with severe learning disability. Over the summer when I suspected he had an infected tooth (he has one tooth which has a cavity and it's been that way since he was 7, watch and wait etc) they got him in the same day for a local dental hospital check up. They said there that they didn't see inflammation or infection that would warrant extraction, but if they had seen that that he'd need to be sedated and it would be done at the main dental hospital for our area. If I'd felt he needed it done then and the distress of sedation etc would outweigh the issue I thought he had, I wouldn't have left until they scheduled it or at least referred. We've had no further issues but if I were you I'd be on to PALS for the hospital/trust where they'd potentially do this and don't let up until they do. Be loud and clear about the issue, her additional needs and the inequalities in healthcare caused by her needs which means she's not able to access dental care on a par with other children her age. I hope you're able to find a way as this sounds so distressing and painful for her and also distressing for you as a result.

The dental hospital (ours is near A&E will help. Call the community dentist tomorrow if you can wait that long, otherwise a and e now. Bongela in a big glob will numb the surface, put it on a toothbrush and let her chew on it if necessary.

paracetamol and ibuprofen can be given in a syringe. Roll her up in a duvet. Put the syringe between her teeth and cheek and deliver a tiny bit to back of the cheek. Lots of little drips with cuddles and a video on.

They will probably have to remove/fill teeth under GA. You don’t need to pay for it. Emergency dental treatment is available to all but particularly to our most vulnerable children.

Ask to be seen by the community dentist going forwards. She needs specialist help and they are really kind and clever.

Definitely a short term solution but if it is an exposed nerve rather than an infection, rubbing Sensodyne toothpaste on to the tooth works instantly. It only lasts a few hours but might help her to get some sleep at least! Good luck OP. I have a young DD with autism and I'm dreading this happening! xx

For the pain try clove oil or toothache drops ( I think that’s the name!) they will numb the area a bit.
A and E might be able to help if it’s agony, toothache is the absolute worst. Push for a referral to dental hospital, they can do all the extractions in one go as an operation

Thank you all so much for your suggestions. Having everything written out so clearly makes it a million times easier for me. I don’t know what’s happened to my memory but it’s become so bad since my LO was born (the endless sleepless nights and constant struggle of dealing with her ASD has really taken its toll). At least now I have all of these tips and I’ll write them all out tomorrow.
It’s awful to think how much pain she’s in and knowing there’s a potentially long wait but I’m so grateful to you all for your suggestions. Most of them I’d not thought of ❤️

The sensodyne is a good idea. I use sensodyne gel and it tastes nice and is sticky so it sticks to the place where it's needed. It's magic at killing the pain of a sensitive tooth.

We tried community NHS dentistry and go absolutely nowhere. If you are stuck, there is a wonderful paediatric dentist in Ipswich who can do proceedures with gas anaesthesia just during a normal appointment, if you happen to be near enough. In the end she travelled to near us and did it at the private hospital under GA, because DS wasn't keen on the mild gas sedation.

This is the good dentist: