Late last year my daughter ‘G’ started complaining of pain in her jaw. I suspected molars or wisdom teeth coming through. Her dentist recommended nurofen, panadol and gentle stretches. A week later the pain was not any better. X-rays were taken which showed all molars already in place and wisdom teeth a long way off from coming through.
We were referred to a maxillofacial surgeon to see what could be done.
The surgeon told us that there was nothing surgical to be done. He referred us to a prosthedontist to have a splint (mouth guard) made up to stop or, at the least relieve her pain.
We saw the prosthedontist who prescribed feldene during the day and Valium at night to relax the muscles. The aim was to try to loosen the jaw enough to relieve some of the pain and make it easier to take impressions of her teeth to make the splint.
Each day the pain has been gradually getting worse. G is 12 and 180cm tall. Because she is the size of an adult she is usually prescribed adult doses of medications.
The following Friday G yawned at school (yr7) and it hurt her jaw. She said it felt like “sand ripping”. It put her in excruciating pain immediately. By that night I had to take her to the hospital where they gave her endone.
On the third time at the hospital the doctor on duty prescribed endone so that we didn’t have to keep turning up at the ED.
Since then G has been in terrible pain or drowsy on painkillers. She hasn’t been able to return to school for five weeks which is horrible as she loves school and misses her friends.
The prosthedontist said that he wanted G to go back to the surgeon for the possibility of cortisone injections into her jaw joints. The surgeon sent her for an MRI and we went back a week later.
The surgeon told us the MRI results then said he wouldn’t do the injections as he prefers to be conservative. He sent G back to the prosthedontist for a splint. Nothing was done to help her pain. It was horribly upsetting.
G’s diagnosis is:
- Disfunctional Temporomandibular Joint (TMJ - jaw joint) both sides.
- Mild osteoarthritis in the TMJ
- Bone spurs in the TMJ
- Slipped discs on both sides of Grace’s mouth. They are in the closed-mouth position and have stayed there.
- Complex 100% overbite
- Yawning, chewing too much, talking or singing causes a ‘Trisma’ of G’s jaw muscles. It was described by the dr as the equivalent to a migraine in the jaw.
We’ve had the impressions taken for her splint and have been referred to another maxillofacial surgeon with a special interest in jaw issues. G will see him early April.
I took G off the Valium myself and asked our GP to prescribe norflex that doesn’t wipe her out. We also got panadeine forte for the daytime when the pain is bad but not endone-worthy.
While we wait to see the new surgeon I have been looking for alternatives to endone. We asked our GP for palexia (which I am on for my back pain with great success). G had her first 50mg dose last night.
We are desperate - Does anyone have any ideas? Experience? How can I convince someone that endone and 12 year olds don’t match?
I'm truly sorry to hear that your daughter is suffering so badly. I cannot imagine the nightmare that poor kid will be going through.
I have one question. Has your daughter got the splint yet? It seems in what you said that she hasn't. I can tell you that the split will give her some relief, because I suffer from TMJ and Bruxism myself and the only time I get any relief is when I have the splint in my mouth. Sure it isn't a huge amount of pain relief, but it is noticeable.
No one here can give you the information you seek, because we are not a clinical organisation. However, you could try alternative ideas, like a pain clinic or maybe a specialist whose main job is dealing with people who suffer pain like your daughter and many others.
If you look on the Australian Pain Society's website you'll find some information as to where you can access these clinics, plus a listing of clinicians, some of whom are very good in what they do:
And here is a list of specialists. The states they work in are shown. I can tell you (without mentioning his name here because we cannot) that the first member on that list is one of the best out there -www.apsoc.org.au/public-listing
It's good that you came here, because you are in a place where people understand what you are and your poor daughter are going through, but unfortunately all we can do is give you some moral support.
I do hope this helps your daughter and wish the best for her in the future. Please come back at some point and let us know what has happened.
I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
I’m now 33 but for the past 4 years have been going through a version of what she’s going through. The first few years were hell. Sustained treatment has me now seeing the light of recovery.
A few things:
I found a neuromuscular dentist who has slowly expanded my palate through an ‘expansion device’ (plate). This is my fundamental treatment, designed to organically shape the system of my mouth so it ‘fits’ together nicely again (tooth extraction got me into this mess). Good news: the process is quick for children. Also: it’s non-invasive.
LDN (low-dose Naltrexone) helped a lot with my pain, taking it down a noticeable level. I’m still on it today. No discernible side-effects whatsoever.
I’d encourage you to give these two suggestions a Google. I’d also suggest you write me a private message. I have a lot more information on this topic, it has been my whole life for multiple years. I especially wish someone had written me as I have written you, because it would have expedited my recovery dramatically.
There are non-surgical options through which your daughter will fully recover, if she hasn’t already!