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.