I received my official TN diagnosis in the summer of seventh grade. It was not until September that I learned how the medications and new pain would affect me in school.
KatieRose has had two Microvascular Decompression (brain) surgeries, one just a few days after her twelfth birthday, and a second two months after her 13th birthday (additional compressions not found in by first neurosurgeon). For a recent writing assignment, she had to write an essay about something that has happened to her, and chose to … Continue reading Surgery From the Kid’s Point of View
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 … Continue reading Trigeminal Neuralgia, the Dentist, and Kids: Best Practices
As we have mentioned, this site is administered by four TN Mamas: Tracy, Meg, Stacie & Ang. We all came together because we all have kids with this awful condition. Different pairs of us met just from having kids with TN, but the four of us really came together and bonded and found this purpose … Continue reading Pediatric TN Issues: Four Key Points
This makes many of us TN parents absolutely insane. Especially those of us whose children were finally diagnosed correctly and then treated (at least somewhat) successfully. We know the damage that can be done to our children and families when we keep running up against incorrect diagnoses. All the literature says that Trigeminal Neuralgia occurs … Continue reading Pediatric TN Challenges: “Doesn’t Happen In Kids.”
I hate to put this challenge so close to the top of our list, but it has to be done. I know there are some absolutely wonderful doctors out there - with some effort, persistence, and TN Mama networking, we found one we will always be thankful for. Due to the rarity of Trigeminal Neuralgia, … Continue reading Pediatric TN Challenges: Doctors
Having Trigeminal Neuralgia is painful and overwhelming and hard beyond the English language’s ability to describe it. Someone with TN, in my experience, often does not even try to really communicate the depth of the battle that it is, so I can certainly not explain it sufficiently. If you child has Trigeminal Neuralgia, they are … Continue reading Pediatric TN Challenges: Communication
So many of us have had the same experience when, after being diagnosed with Trigeminal Neuralgia, we finally get our long awaited MRI back. All that waiting, thinking THIS is finally going to reveal why our child is in excruiciating pain. Only to be told the MRI is "Clear". There is no compression. Then, we … Continue reading Do I Have the Right MRI? What If My MRI Is “Clear”?
This may be a little jarring to those of you with younger TNKids, but we are in contact with families of kids up to age 20, and not so out of the realm of possibility at all for older teens. It may also seem inconceivable given how poorly your child is doing and the fact … Continue reading It’s Not Just Kids Being Kids… Recreational Drug and Alcohol Use
I’d say it’s the words we didn’t want to hear, the diagnosis we did not want. But since none of us had probably ever heard of Trigeminal Neuralgia, your first reaction was likely, “Huh?” There is a dearth of information out there, especially good information and especially for pediatric patients with TN. I feel the … Continue reading The Things I Wish I’d Known When My Child Was Diagnosed With TN, alternatively titled, “Do You Doctors Know ANYTHING?”