I am embarrassed to say how long we went with our daughter NOT going to the dentist once TN set in.  She had been to the dentist only 3 weeks prior to her first attack, which was one of the things that helped us rule out dental problems from nearly Day 1.  Clear, healthy x-rays had just been taken on a child who had never had a cavity, so our dentist told us she didn’t know what was going on with our girl, but she knew it wasn’t dental.

As anyone with TN or Facial Pain will tell you, the mouth and teeth can be a terrible trigger for the pain.  The idea of brushing teeth became filled with trepidation and tears, and going to the dentist was simply too much for us to think about.  I’m not saying we were right in that.  Not at all.  But that’s where we were.

We didn’t return to the dentist for 2 years.  I know, I KNOW this was not good.  I also know, we are not at all alone in this.

Complete avoidance is not a healthy or realistic strategy, long term, for our kids. However, we do need to approach dental work differently than the average dental patient.  So, this past weekend when seven of us TN Mamas attended the national FPA conference, three of us sought out Dr. Donald Nixdorf, DDS, Associate Professor at the University of Minnesota in the Division of TMD & Orofacial Pain, Adjunct and Assistant Professor in the Department of Neurology, and a member of the TNA Medical Advisory Board (wow, that’s a mouthful).

Trigeminal Neuralgia and the Dentist: Ask the Expert

We asked a fairly straight-forward question: How do we best approach dental appointments for our TNKids, to make it the best possible experience.  Following is an outline of Dr. Nixdorf’s response to our lunchtime question.  On our Resource Documents Page is also an article, Ways to Help Reduce Pain Associated with Dental Treatment, that he wrote with Thiago Nascimento for the Facial Pain Association outlining these recommendations.  This will give you something a little more authoritative than our blog posting to print and take to your dentist!

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Trigeminal Neuralgia and the Dentist: Best Practices

1. Before the Appointment:

• Minimize Anxiety and Stress beforehand – anxiety and stress heighten our sensitivity to pain, so just doing some talking about what you are doing to minimize any problems may help your child. Also (my words) giving them some control and input over how this happens and how to keep their anxiety low is good.  We’ve taken a favorite stuffed animal, pillow and blanket to doctor appointments with no shame.
• While we do not want to put our kids on high levels of their meds unnecessarily, it may be helpful to do a higher than usual dosage for a period of time prior to a planned procedure so you are starting from a point of well-controlled pain.  Discuss this with your doctor to work out dosage and time period.
• Work with your dentist to schedule procedures at times of well-controlled pain.
• Ask: Does this work really need to be done? We are not suggesting that you accuse your dentist of trying to do unneeded procedures here.  What we are suggesting is that while this procedure may be the best course of treatment for a normal patient, something less invasive and traumatizing to the nerve and tissue may be a perfectly fine substitute, and actually better for your child given his/her pain struggles. Don’t be afraid to ask your dentist to take that into consideration.
• Do pre-emptive pain reduction including a local anesthetic such as topical lidocaine. Don’t be afraid to be generous with this stuff, you can even swallow a LOT of it (I believe his phrasing was ‘buckets’) without adverse reactions – breathing it is not good, and that is the risk, so gel topical is best.

2. Before, During the Procedure, and Through Healing

• Anti-inflammatories such as NSAIDs (e.g. Ibuprofen) may be taken with your doctor’s supervision to keep down inflammation, which can be a trigger for facial pain. These should be started **at least a day before** the procedure in order to be effective in the system for the procedure. These should be taken at the anti-inflammatory dosage (not pain relief dosage), which for an adult is 3x200MG, 4x/day for Ibuprofen – ASK YOUR DOCTOR for the pediatric dosage for your child. These NSAIDs should be continued through the day of the procedure and the full healing period! For example, for a simple filling this may be about 5 days after the procedure, for something like a root canal you are talking more like 7-10 days after. IMPORTANT NOTE: anti-inflammatories inhibit bone healing, so if you are doing something that will require bone healing, talk to the doctor.
• Long Acting Opiods – I know, we all worry, a lot, about opioids for our kids, Me too.  But when used properly, and for dental work ONLY for a short period of time from just before (to be effective in the system), day of procedure, through the healing period, it is exactly what they are good for.  This should be done under the supervision of the doctor, and ONLY for the period just before the procedure through the healing of the procedure to prevent the inflammation and irritation of the nerve.  The idea is to reduce dental procedure-related pain because this pain is thought to worsen the TN pain.  Therefore, used properly they can really help.

3. Consider Conscious Sedation

**along with pain prevention and anti-inflammatory** to reduce anxiety.  Nitrous oxide gas is great for this because it has good anxiety reducing properties, mild pain relieving properties, and it can be titrated, meaning turned on and off.

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Kids with Trigeminal Neuralgia: Braces?

I had to ask this since our dentist is always encouraging us to take KatieRose to the orthodontist for a consult and I am SOOO hesitant.  I know at least one of our TNKids had to have braces removed in the Emergency Room during very bad pain flare that led to an MRI.

So, from that discussion, comes this:

First, if you child’s pain is not diagnosed and well-controlled, his short answer was “DON’T DO IT” You have too many unknowns and pain issues already, and getting braces will not make any of it better.  Your first order of business is to make sure you have a firm diagnosis and your child’s facial pain managed.

Second, if your child’s pain is diagnosed and well-controlled, then he still is very hesitant to proceed with braces in a child with TN.  His belief is that there is a very high incidence of braces being cosmetic, and cosmetic is not worth the irritation to the nerve and possible complications.

My own note on braces:

At this point we were being ushered out of lunch by those who run the schedule so we couldn’t continue. However, my 2 cents (not from Dr. Nixdorf) as a final thought on braces is if you and your child really want to or need to proceed with some sort of braces, consider a removable retainer or something such as Invisalign. Then if your child has a flare, or needs to have something done medically, you will be able to just remove it temporarily.

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I have done my best to honestly represent Dr. Nixdorf’s input here, and I hope it is helpful to you all.