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.

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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.

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.