DS, 13 with TMJ. Been off school for nearly a month. Help!

[IDismyname]

My ds has at last been diagnosed with TMJ. The muscles in his jaws have seized up and have caused him pain for weeks, now. He is literally grey with pain. Its in his ears, his jaws and head.

We have visited Gp's, two consultants and have arrived at the diagnosis, but no painkillers or anti inflammatories (ibuprofen) work for him. He does now have to wear a splint at night to keep his mouth open a little bit and to retain the muscles, but it hurts him.

At vast expense, we are seeing a chiropractor who does give him some temporary relief, and every time we try and get him back to school, it kicks off again. (We have checked with school and they say he's fine - no problems at all)

He is sooooo miserable - quite understandably - and I am lost. Really lost as to how to help him. Its awful to see your child in pain and be unable to help.

Have any of you had this condition, or know quite where I can find more help, I'd be very grateful

What does his dentist say?
I know v v little of this but isn't this condition sometimes caused/worsened by 'bite' problems?

I have just been diagnosed with this recently, and have an appointment to get a splint made at then end of the month. I really think I have had it for years, but never quite knew what was wrong, so I can sympathise.

I have honestly found that nothing really helps the headaches at all, I can sometime have them solidly for days, going to bed with them and still waking up in the morning, but weirdly I find it I get someone to sort of massage my neck and shoulders that can give a bit of relief.

As well as the usual painkillers I have also been given an anti inflammatory gel to be applied directly to the jaw area (on the outside) as my GP said some people really get great relief from this compared to tablets, so that might be something to try if you haven't already?

Also heat might help, I wrap one of those long heat in the microwave things around my head, neck, jaw, shoulder area and that can help a little too.

physic helped me

physio, that is

Ibuleve Gel helps me.

Also, alternating hot and cold packs can help.

Mine gets worse if I'm tense as I grind my teeth. Have you asked him about school?

Where in the country are you? Dentists deal with this problem on a daily basis. SOmeone from the British Society of Occlusal Studies will be able to help you. Have a google.

You have been to the dentist I assume?

Thank you all for your replies.... We've done dentists x 2, consultants x 2 (first one for ears, who then referred us to maxiliofacial who made a splint) and GP's x 7 visits in about 3 weeks. Also 4 x visits to Chiropractor and more to follow - costing a fortune!

DS is in such pain. He's been on ibuprofen and I then gave him Voltarol gel to put on which sort of worked (he said pain from 9/10 down to 7/10) but now GP has given him pills for 5 days which seem to combine the 2 - so unable to dose him with anything else apart from paracetamol (- which is useless for this).

I had no idea about this condition. He has missed so much school that I feel he'll be kept down a year if he's not back soon.

I will google the B Soc of Occlusal Studies, and see if they can help.

Keep any new ideas coming, cos I'm out of them!

I had surgery for my TMJ three years ago, by a maxilliofacial surgeon on the NHS. I went from daily pain to no pain straightaway. However, I was off work for a month following surgery (bilateral TMJ arthroplasty) Also, the surgeon says they don't actually know what the long term prognosis is.

I was on painkillers and temazipan prior to surgery.

I have this exact problem, tried doctors, dentists, othodontists, consultants, x rays, mri scans and chiropractic over the last 12 years (I am 27).

I am finally on the road to improvement and this has come about as a result of two things; I have had a bite raiser/re-trainer fitted (soft plastic mould of my teeth in my lower jaw which I wear at night to stop my jaw closing properly) and cranial osteopathy.

I was completely at my wits end with the pain until my chiropractor suggested I try cranial osteopathy. I've been having it weekly for 6 weeks and I've just come off the high strength codeine that I had been taking for far too long. Couldn't recommend it highly enough.

I also suffered/suffer from the excruciating headaches and neck/ shoulder pain and these have finally started easing too.

I have this too, mine will be fine for a while then flare up and it can be awful.

I switched dentists and my new dentist is something of an expert on it, she's great! I have a little block thing that clips on my front teeth instead of a splint, stops my jaw clenching at night.

She also recommended I get regular massages to release tension in shoulder, neck and jaw muscles which has made a huge difference.

Also don't write paracetamol off, it is a really efficient painkiller when taken regularly. If your DS takes it just here and there it won't work but if he takes 2 four times a day it will make a difference. It may not be enough on its own but I promise you it will help and you can combine it with Ibuprofen, etc.

My maxillofacial consultant gave me Nortriptyline to take at night which eased the pain and helped me sleep

I was going to suggest a good osteopath as well. I do find them a lot better than chiros.....

Thanks for the feedback on chiropractors vs Osteopaths. I may look in to that, and also the paracetamol, too.

I think the sad thing is that its not going to get better very quickly, which is depressing when he is missing so much school. From what I hear, and read, it can take years to sort out.

The maxilofacial surgeon said something about botox injections, which sort of makes sense, but on a 13 year old? Hmmm not too sure...