Hi everyone. I just posted in the General TN section.
My healthy, athletic 13 year-old son was diagnosed with TN this week by a paediatric neurologist and an oral pathologist. We are now waiting for a MRI.
Maybe I’m in denial because he is not displaying all of the symptoms. I think the MRI will reveal something and hope it does since almost all tumours are benign.
I’m finding this forum very helpful in the meantime.
Hello Nancy, let me first say I’m very sorry you and your son are going through this. You are my first post as I am new here and have a 14year old daughter and thought your story was about you having this with a child not him. It can be aweful not knowing what is happening when symptoms do occur so knowledge is power but then it can be hard to accept. Denial is normal and time does help. I can say good news is in my experience and knowledge remission is part of this disease. Trigeminal N or TN can go in phases so. Wing prepairing helps. For me the burning flashes when my cheeks get Rosey red and feels on for I have found main my own ice packs have been amazing. I use a food saver and cut packs to sized I want skinny and long, short and medium wide. They freeze and clean easy and last a lot longer then the blue ones that are nice and soft but don’t stay cold long at all. Once the homemade ones defrost some you can break them up so less pressure on face. Medicines are definitely a person to person decision. I am extremely sensitive with side effects that often outweigh the benefits but trial and error you find some that works. As you mentioned him not showing signs that can be the remission moments and I wanted to add I had a brain MRI and my neurologist said often unless major damage is done to the Trigeminal nerve it won’t show but doesn’t mean it isn’t present. It is very hard to diagnose and why it has a 10year+ lag time before it is often discovered. Best of everything to you both and being a caring supportive mother as you are just being on this web site reaching out I have no doubt he will have you when and if he needs you. If helps symptoms are unique to everyone and may take time to develop but remission is always the best to hope for and medical advances for treatment. I will be having radiation after my next major surgery if my TN symptoms get bad enough. It helps me also on flair ups aamoung other things I always eat with plastic utensils and paper cups (I recycle) as hitting my teeth with metal causes shocks and flair ups although I have many other conditions with my face just thought if your son Flair’s up just something that may help. Also sensitive toothpaste to help with hot/cold never hurts to be prepaired, sensodine or others I’d ask your dentist and Doctor’s about but can’t imagine they wouldn’t think is being proactive. You said he is athletic so that is awesome, distraction works great and I do hope as young as he is so much will be available as he grows I the medical advancements to help should he need it for the future tends to bring more options not less. Hopefully also time will open more grounds for support of young teenagers as a young adult I have been challenged finding support but things are changing with social media and Thanks to Red we have this amazing forum for us all!