TNKidsRock the News!

In a very last minute coordination, we were able to arrange a follow up interview with Eileen Frere of KABC news channel 7 this afternoon. Tracy and Ang were both there also, so the interview was with all three of our TN Kids!  To see the segment, check it out here.

20150227_123756

We are SO THANKFUL to Eileen Frere for following our story since we first met the day before my girl’s 2nd MVD.  She has always been quick to do a follow up with us, and has been thankful right along with us to hear of the number of kids and adults who have found hope, and even another avenue of treatment, through this story.

If you find yourself at the page because of seeing the story, welcome!  Thank you for your interest in Pediatric Trigeminal Neuralgia.  This site is newly launched, and we are just populating it.  Keep checking back for new information.

If this story has touched you, and you want to DO something – here’s what you do:  Go to The Facial Pain Research Foundation and make a donation of any amount at all.  This is the only organization researching specifically for a cure for Trigeminal Neuralgia.  Michael Pasternak is not only the founder of the foundation, but also a TN patient himself, and a dear friend.  The foundation is 100% volunteer, and is funding 3 different research projects right now – not counting the one that is so promising it has now been picked up for funding by NIH.  If you make a donation and mention TNKidsRock, Michael will know it is because of our work and send us a note letting us know it happened.

If you are a TN Patient, welcome, and gentle hugs to your non-TN side.  We fight on along side you, and are working for a cure for all of us.  For more info on Facial Pain and TN, check out TNA – The Facial Pain Association, including upcoming conferences where you can not only meet others with TN, but hear leading medical professionals talk about their work in the field.

If you are here as the family of a pediatric TN patient… You are not alone.  I know it feels that way so much of the time.  Pediatric doctors usually have never seen a TN patient before, and you are all learning together.  There are many unique challenges you will face, and you have to think about treatment differently than an adult patient.  We want to be here to walk alongside you, share knowledge, and learn together.  You can contact us through TNKidsRock@gmail.com.  Hugs to you.

To all in the TN world, fight on.

~Meg, Ang, Tracy & Stacie

The Pain Journal

I’m so sorry to be making this post.  I’ve stopped several times and had to walk away.  It’s hard to talk about the reality of the pain your child is going through.  At times you develop a clinical distance from the emotional part of it, because you have to in order to get through the conversations you have to get through.  But other times, well, that’s just impossible.  This is a very, very hard topic.  Yet it is also very important.  So we will discuss it.

One of the things we recommend is keeping a pain journal. If your child is younger, this will be you, asking questions and writing things down. If your child is older – or as your child gets older – this changes to them tracking this information.

The information in your journal is an extremely helpful diagnostic tool. When your child has pain like this, you think you will never forget, and in a way that is true. But after months of dealing with TN, things do start to run together.  Details get lost in the pile of details you are having to stay on top of every day.  So it is truly important to write details of the pain down.

The pain journal will allow you to go back and analyze things like: How did she react to that medication? or Is this action becoming a consistent trigger? How long has this new pain been involved in attacks? How often does she get attacks in the middle of the night? Is his pain more stabbing or throbbing or boring? Are these attacks getting longer? Or more frequent?

This information is very valuable to your doctors, and the more detail you are able to give a good doctor, the better diagnosis you will get. For several of us, our (or our child’s) ability to specifically describe the pain expanded the exploration during brain surgery, and caught compressions on other nerves that may not have been caught without that information.

Your doctor may or may not want to actually review your pain journal. However, I strongly recommend not only taking it to the appointment and referring to it, but reviewing it before your appointment and marking significant changes and/or anything that sparks questions for you.

So – what should be included in the pain journal?

The basics should always be included:

  • The date
  • What time did pain start and end?
  • What type of pain is it? (stabbing, throbbing, etc.)
  • Where was the pain located? (The more specific the better.  Does “ear” mean in front of the ear?  Or inside the ear?)
  • Is the pain constant? Or are there breaks?  Or are there both components?
  • Where was it on a scale of 1-10? (You will get this question A LOT.)
  • Was there any action immediately prior to onset that could be a trigger?

It’s also good to include information such as:

  • The current regular medication dosage. I would always note the day that we changed dosages and highlight it.  That would make it easier to find later.
  • Any medication taken for breakthrough pain, and dosage.
  • Whether breakthrough medication helped or not.
  • Things that may help you narrow down triggers: location, weather, eating/drinking, etc.

As far as what you should use, it can be as simple as a pocket –sized notebook, that’s all I used.  It fits in the purse, it goes everywhere with us.  Or as sophisticated as it helps you to make it.  The biggest thing is for it to be something you will have with you, and you (or your child) will use.

On the Resource Documents page is a downloadable spreadsheet called Jen’s Pain Journal, which one of our dear TN Mama friends developed for her teen daughter to use.  With it, she need only fill in blanks, and circle the correct information.  During pain, the quicker and simpler, the better.

When they are experiencing pain, it is sometimes very hard to impossible for our kids to communicate details clearly.  There were times I would just have to wait and cry through it with her, then once it was finished – or at least less – she would go through and answer questions for me.  Sometimes I would make notes of body language, and ask her about it later.  When she was actively trying to claw through her mattress and sobbing, I didn’t have to ask where she was on the scale.

It became a weird kind of sixth sense, to be able to look at her body language and mentally guess pretty close what level her pain was at.  For my daughter (and yours may be different, so don’t necessarily go by this) talking, school work, and life as normal could continue up through a “3” pretty easily.  Quiet and eyes closed happened at about “4”.  Fidgeting started around “6”.  Tears around “7”.  And I don’t like talking about the top of the scale, which seems to me to shoot past “10”.  Her scale also changed over time as she developed a high tolerance for pain.  I guarantee you that her “2” is not my “2”.

This can be a hard thing to do.  Who watches their kid in pain and takes notes for goodness sake?!  I know. Really.  At the same time, a good neurologist and neurosurgeon are going to be really helped by the details.  That part will be entirely worth it.  Once we started going to doctor after doctor, and they would ask so many questions about the pain, my girl became very cooperative in making the notes.  If I didn’t ask the right question, she would tell me about some new piece needed to be noted.

Again, if you are reading this, I’m sorry.  You’re probably doing so because you or someone you love needs this information.  It’s not an easy place to be.  We wish you all the best in your journey.

Semi-Related Articles

These articles are not necessarily specific to TN, but are good reads relating to the journey of chronic illness, chronic pain, illness in children, or being the parent/caregiver.  Some may help you understand your child better.  Hopefully some will resonate with you about your experience.

1. Why You Should Never Ask ‘Have You Tried…?’

http://www.huffingtonpost.com/lottie-v-ryan/why-you-should-never-ask-_b_6057062.html

My Child has Trigeminal Neuralgia, Now What?

Let’s talk about the first steps you need to take now that you believe your child may have Trigeminal Neuralgia.   Thank you to Stacie for developing the initial list on this!  I’ve added and augmented to create this post.

  1. Start keeping a Pain Journal

There is an entire post dedicated to this, so I won’t go into a whole lot of detail here.  However, it is important to get started on this.  The details of how and when the pain starts, the details of how it feels during, whether it’s constant or your child gets “attacks”, if the pain is over the eye, in the eye, in front of the ear or in the ear, etc. will be very important to a good diagnostician.  Grab any notebook, or the downloadable pain journal sheets we have posted, and start tracking the details of your child’s pain.

  1. See a Pediatric Neurologist

This is very possibly who diagnosed your child, but if not, this is where to start.  A neurologist is the one who should really go through your child’s symptoms and determine that it is in fact Trigeminal Neuralgia.  S/he should also do a full neurological evaluation to be sure there are not other symptoms that should be discussed.  These tests are, for the most part, noninvasive and include a lot of “does this feel the same as this” and “walk this way” and “stand on one foot” kinds of things.

Your Pediatric Neurologist can be your best friend.  If you can successfully partner together and maintain regular, clear communication the two of you can determine the best medication(s) to manage your child’s pain.

That being said… Pediatric Neurologists are not trained the same as Adult Neurologists.  I don’t mean this s a criticism, it’s just a reality that needs to be recognized when you are dealing with an “adult” condition.  They have almost never had the need to be well versed in conditions that are rare in the first place, and also considered by text books to be an “over age 50” affliction.  If you think about it, it wouldn’t make a whole lot of sense logically for them to spend all their time keeping up on conditions they will encounter so rarely, if at all.

You may think it would be better to just go to a regular adult neurologist, and you may be right.  However, in our experience it is very, very difficult, if not impossible, to find an adult neurologist who is willing to take on a pediatric patient.  So, in reality, we find the best situations are where parent and pediatric neurologist are working together to actively understand their child/patient’s situation, and find the best options for treatment.

  1. Get the right MRI.

It is very likely that one of the first things your Peds Neuro is going to want to do once they determine your child’s pain seems like Trigeminal Neuralgia is an MRI.  This will look at the overall brain health and rule out certain possible causes of TN, such as tumor pressing on the nerve.  Trigeminal Neuralgia is also a symptom, and sometimes an early symptom of Multiple Sclerosis.   An MRI cannot definitively determine MS, but can give an indication of whether further investigation in this direction is warranted.

However, we have run into a number of cases – including among us! – where the wrong, or at least not the best, MRI is ordered.  Following is a quote from our neurosurgeon in the MRI to get:

Every center calls it a different name. It also varies according to machine manufacturer. At UCI we call it a ‘with & without contrast cranial nerve protocol MR’. It includes general FLAIR & T2 non contrast scans to rule out Multiple Sclerosis. It includes SPGR contrast tri-planar thin cut (1mm) and magnified posterior fossa images. Most importantly it included T2 volumetric acquisitions with 0.8mm slice thickness in all three planes. Depending on the machine manufacturer, these latter series can go by the name of CISS or FIESTA. This last series in my opinion is the most important and informative for identifying vascular contact.

We will have another post on MRI results and the complicated discussion that can be.  For now, let’s leave it here.

  1. Start on anti-seizure medications.

The first line of attack as far as medication goes for Trigeminal Neuralgia are anti-seizure medications, the same meds that are given to epilepsy patients.  These have been found to be most effective for those suffering from classic Trigeminal Neuralgia.  These medications include:

  • Tegretol (Carbemazepine)
  • Trileptal (Oxcarbazepine)– a “brother” of Tegretol shown to have fewer side effects for many
  • Aptiom/Zebinix/Exalief (Eslicarbazepine) – the most recent derivation of Tegretol, hopefully even better than Trileptal when it comes to side effects.
  • Gabapentin (Neurontin) – while the above work to stop the Trigeminal Nerve from being triggered in the first place, Gabapentin works to shut down a trigger if it does occur. For this reason, Gabapentin is often used in combination with one of the above, if the pain is not as well managed with just the one medication.

One of these medications may be prescribed on the first visit to the neurologist, even before the MRI is ordered.  (However, we would recommend asking for both the prescription and the order for the MRI as soon as “Trigeminal Neuralgia” is on the table.)  Having the pain respond well to these medications is often used a s diagnostic indicator for TN: if several days after beginning the medication your child’s pain is measurably reduced, it is further proof you really are dealing with Trigeminal Neuralgia.  However, there is a lot of variation in response to medications, so not responding doesn’t necessarily mean you are not dealing with Trigeminal Neuralgia.

An important note on these medications:  These medications are made to work when being consistently taken, and take 3 to 5 days to build up in the body and effective at the dosage.  Therefore, you need to take them on a regular schedule, and not expect for them to start helping for several days.  This also means that taking a dose at the onset of pain will not help that pain.  (There is a fast-acting Tegretol pill, and that is a different situation.)  It also means if the pain goes away, the medication is working and you should stay on it, unless your doctor is in agreement on attempting to wean off or to a lower dosage.  Weaning off should be done carefully, and under a doctor’s supervision as the sudden stopping of them can actually cause seizures and other nasty effects.

Also, again just from our experience and WE ARE NOT MEDICAL PROFESSIONALS, we have found that not throwing a number of different medications at this at one time is very helpful in determining what is actually working and not.  Plus, the drug interactions start stacking up and it can quickly get very complicated when you just need an over the counter cough medicine one day.  Over time these kids may wind up needing drug cocktails of multiple medications, but the slower the progression of that, the easier your life will be.

Note on Steroids:  It is not unusual for a short dose steroid pack to be recommended.  Trigeminal Neuralgia, while not at its root caused by inflammation, can be aggravated by inflammation of the nerve due to some other health issue.  Some kids find that an “increased flare time” can be helped somewhat by a short-term steroid, if some form of inflammation of the nerve is causing their pain to spike or occur more frequently.  Even post-surgery several of our kids had their TN pain kick up, only to find later they were fighting a cold, bronchitis, or ear infection that also happened to inflame their damaged/healing nerve.  The steroids may be worth a shot.

We will say more about life on these meds in another post.

  1. Keep your child’s overall health and immunity functioning well.

As our neurosurgeon has explained to us, damaged nerves can be affected by Sickness, Stress, and Sleepiness.  Therefore, it is our goal to minimize those things in our children to avoid making a tough situation even worse.  This means doing those “healthy lifestyle” things that were always good suggestions before, but maybe allowed to let slide more than you want to now.  So keep in mind things like:

A solid 8 hours of sleep a night.  Or more.  Pain, medications, and the upheaval your child is going through right now take a toll, so 8 hours is a guideline.  In our (Megs) house, we made sure our girl got to sleep at a reasonable hour, and let her naturally wake up in the morning.  I realize not everyone’s life allows for that, but seriously look at your schedule and make sure enough sleep is gotten at night.  Also, the medications, especially at first, tend to really cause exhaustion.  So don’t be surprised if LONG nights sleep and naps are needed.

Nutrition is important.  On high pain days we would often allow treats and not be strict at meal time.  And that’s totally understandable.  When your child just spent hours in intense pain, how do you say no to chocolate dessert?  However, overall, really try to keep them on a balanced diet with good vitamin-rich foods, and add a multi-vitamin if they are not on one already.  Their bodies are carrying them through a lot and need the strength to do so.

Avoid exposure to communicable sickness.  A bit of a cold can really amp up their pain because of the aforementioned inflammation issues, and complicate their TN in ways you won’t anticipate.  Our girl had the worst time with a congested cold because breathing over her teeth was triggering her pain, but she couldn’t breathe through her nose.  While your child still has to have a life, and still has to see friends and enjoy themselves whenever they can (that’s a topic for another post!), be conscious of the ramifications of those decisions and use wisdom.

Avoid excessive stress.  I hate even listing this one, because we all know if you are wrestling TN, stress has moved right into your house and camped out in the living room.  However, just keep this is mind.  An overload of stress can cause damaged nerves to fire up, causing pain.  So whatever helps your child with stress relief, try to build it in to life.  A little exercise if s/he is up to it?  Curling up on the couch and watching a movie with you?  A good back rub some time?  Listening to their favorite music?  If you notice a higher level of stress coming from them, try to learn their stress relief needs and suggest it.

You may think it’s going to be really hard to get your child to go along with these things, and I’m sure there will be days it’s a real pain.  We found though, that when we framed the issue with minimizing TN attacks and pain, we had a far greater cooperation.

  1. Try a variety of pain management techniques.

There are probably as many strategies for dealing with the pain as there are TN patients, so experiment.  It is pretty common for TN patients to want darkness and quiet.  Often they can’t stand to be touched.  Other possibilities are movement, vocalizing (otherwise known as moaning/yelling), heat or cold packs, etc.  At some point we will dedicate a post to a master list of things to try.

In the meantime talk to your child some time when they are not in pain about their ideas and be prepared to try it when needed.  We slowly built a standard assortment of things she wanted with her during pain.  Her favorite stuffed animal.  Her own pillow.  Super-soft blanket.  Box of tissues.  Pain journal & pen (for mom).  Moms cell phone in case we need to text/call doctor.  We literally hauled these things wherever we went – which was mostly doctor’s appointments – during the bad times.

Hopefully this will help you get started as well as you can.

Hugs to you.

How Do I Talk to My Child about their Trigeminal Neuralgia?

It is hard to give specific advice in this area because it will vary so much, not only age group to age group, but child to child.  However, we want to do our best to give you some guidance based on what we have learned in our years on this path with our kids.

  1. They need to know you are there for them.  Always reinforce that you are in this together.

We know.  WE KNOW it is too much some days.  There are times you desperately want to pretend TN doesn’t exist, and the thought of another attack makes you want to run away from home.  But your child needs to know that you are in this fight together.  They need to know that no matter how bad it gets, you will be beside them. They are not too much of a burden.  They will never be too much of a burden.  You will always fight for them and with them.

Many of us TN Mamas have had times our child hid symptoms from us, or downplayed them.  Sometimes they just don’t want to talk about TN today.  Other times symptoms are so a part of every day life, they just forget to speak up.  Some of that is perfectly normal and ok to let them do.  But you do not want your child to start hiding symptoms because they are afraid of you not being able to cope with it.  Find yourself your own support and guidance, a safe place to fall apart sometimes, then be the place it is safe for them to hurt.

Walking the TN path on their own is too much for many adult patients.  It’s far too much to let your child start taking on.  You never want them to feel they have to shoulder this on their own.

  1. Validate their pain.

Acknowledge it is real, it is big, and you don’t doubt them.  It is tough for adults to comprehend that a child can be in that much pain.  For many there can be a tendency toward minimizing it, thinking the child is exaggerating, or being overly dramatic.

One of our neurosurgeons told us that the adult, women, TN patients he has had have told him they would rather go through natural childbirth multiple times than have another TN attack.  We would never minimize the pain of childbirth, right?  And yet women who have experienced both would take childbirth over the pain of TN.  Don’t minimize the pain.  Don’t let other adults around them do it either – even if that adult is a medical professional.

Reassure them that you believe them.  It is incredibly painful.  They are so amazingly strong for going through this pain and still being the awesome child they are.

3.  Be as honest as you can about what is going on with their condition.

This is their body that is feeling this pain, and their body that has to deal with the treatments.  Be as honest as possible about what is causing their pain, as well as treatment options.

Now, I say “as honest as you can be” because depending on the age of your child, you may need to edit for their understanding and emotional maturity.  However, my recommendation as a parent – not as a professional in any field, but as a parent – is to err on the side of thoroughly answering their questions and informing them.  Taking some of the unknown and mystery out of it will help take away some of the fear, too.

Doing this requires you to understand what is going on physically with their condition, and to be able to distill that information down for them, which I understand is no small thing.  But you know your child and should do your best to give them the information they need to understand.

Also in this category is being honest and not painting  falsely rosey picture.  No promises of TN being cured because they have a few good days.  Your child will be looking to you to help understanding all that is happening to them.  They need to trust you in those moments, so be conscious of always deserving that trust.

4. Reassure them (and yourself!) that there is HOPE.

It was a hard, hard day when my (Megs) daughter heard ‘Suicide Disease’ the first time.  It was a neurosurgeon who told her it was called that.  She was only 11 years old, actively having attacks at the time, and had to ask me what ‘suicide’ meant.  We also learned later that our girl had thought that she was dying.  She couldn’t imagine she had this much pain and wasn’t.  She thought we either didn’t know, or weren’t telling her.

It can be easy to get swept up in the bad days, focused on the pain and how hard the fight is sometimes.  We have to work to keep our kids out of that pit.  We need to practice remembering the hope.  Remember:

  • We have medications that are coming out with new generations with few side effects all the time.
  • We have surgical procedures that are getting better and better success rates as technology progresses and we learn more about TN.
  • The Facial Pain Research Foundation believes they are within a decade of a cure.
  • Some of the most awesome people I have ever met, I have met through this journey.

It is no little job before you, so please don’t take any of what is written here to say that this is easy, or that you have to be perfect in all of this.  We are sharing things we have learned along they way – we are not saying we were great at it every day.  Some days you will do better at this than others.  That’s ok.

Love, Hugs & Hope to you.