Caught a program on medical channel today about a little angel of 4 years of age who was diagnosed with TN. Parents struggled with going from doctor to doctor tying to find out why their child would scream in pain with her little hand up against the cheek but not touching. It began at the age of 2. She was not able to intially verbalize her pain, but the screams caught her larents attentin. Confused wanting to find her help she became more symptomatic with her various trggers. Sometimes eating, sometimes the water splashing against her tiny face during bath time. The screams were heart wretching . It was to the point that a pediatrician said she was just looking for attention, obviously not the case. In the end , her larents brought her to a pediatric dentist. After hearing the story of this pain that plagued this little one and some tests, the dentist was convinced she had TN. Very, very rare in toddlers, but parents were relieved that their daughter had a diagnosis and there was something that could be done to stop the pain. Mom of course felt a sense of guilt because she was convinced that maybe she was looking for attention as the doctor had said. Of course we have all been there with our children and who could possibly think of trigeminal neuralgia as a diagnosis… Mom had never even heard of this. It was not Moms fault. They started her kittle girl on low dose of anti-convulsive medication, which they say helped within 10 minutes, imagine to see your little babe pain free. Its a life long disease but what I took from this show was four letters, they are HOPE!
WOW! 2 years of suffering for this poor little baby! I am so happy that she was finally diagnosed and getting treatment.
Hi Donna, cannot imagine what thus little angel went thru. As adults we find it difficult cannot imagine what is like for her. Its going to take alot of courage for her to deal with this,but at least her parents finally have an answer. Hope you are doing okay Donna, my best to you
Joanne
jeezz...this is super sad makes me so angry that doctors have stopped listening! We have human instincts and know when something is wrong!
Jstagrl29,
Awareness of TN I believe is very important I know your angry but try not be. It just shows how difficult diagnosing TN can be whether your a toddler or an adult. The process to get to a diagnosis remains frustrating. Because most doctors may never see a TN patient in their practice during their careers. These parents were persistent in finding out why their child was screaming and placing her little hand close to the cheek. Increase in her symptoms made these parents take pause. As a parent it is instinctual to protect our kids. To watch them be in pain not acceptable with an answer shes looking for attention. You find in adults the same thing happens, oh shes looking for attention or shes too emotional. Those remarks make us upset and more determined in attempts to find out what is causing our pain. We sometimes clump all doctors in the same light. Doctors are just not exposed as much to the disorder, maybe making them more vulnerable to answering this way, because they truely dont know. The best we can do is become more powerful as a group through knowledge and awareness. This empowers us to be better advocates for ourselves. All these tools we use will help us in the end even if may take some time. I see at as it doesnt matter how long it takes to get there but that we arrive.
My Best
Joanne
My god, that poor child. I can't imagine being so little and not being able to explain that horrible pain. Jeez...i didn't even see the program and i'm wanting to cry!
Very happy that they finally got a correct diagnosis for her.
As for mom believing that the child just wanted attention. Moms are plain old people too..and we all make mistakes. Sounds like she was doing the best she could with the information she had.
As for medical professionals not knowing what TN is...., yeah i get angry about that sometimes. I've dealt with a number of them who didn't have a clue. I feel like they should know about it and recognize it. However...they are just plain old people too..and they make mistakes and/or have to offer advice based on the information that they have. I think the fix for this is to make sure they have the information they NEED about TN. TN awareness needs to be raised. As Joanne, said...we need to be better advocates for ourselves. And in turn, that will help other patients down the line.
Thank you for sharing about this show...it was sad to read about, but i'm glad that in the end the child found relief. I"m also glad that there was something on TV about TN. Maybe some Dr or Dentist was watching, and will think of it next time a patient comes in describing that kind of pain...
~Mistee
I saw this same show back when I first started having symptoms of TN but didn't know what it was. At the time I had been to 2 dentists and had a root canal and of course got no relief. I was at my wits end and was really scared that people would think I was making this up. Then I was up in the middle of the night feeding my baby and just happened to turn the tv on and this show was on. As I was watching it I started to think wow this sounds exactly like what's happening to me. So, I went to my dr with this info and was officially diagnosed. It's really sad to think that I diagnosed myself b/c the medical community is so unaware of this disease.