Health Update - Parry Romberg & Trigeminal Neuralgia

Here is the history-  (if you want to skip this scroll down to the next bolded section) I don't post a lot about my son's medical condition. He was diagnosed with Parry Romberg Syndrome at 5 years old. I knew something was wrong starting at 2 1/2. It took over two years and lots of doctors to get a diagnosis and start treatment. 

Because PRS is a rare disease, (Click the link to learn more about Parry Romberg Syndrome.) there hasn't been much research or treatment history for this condition. We were so fortunate to find a doctor who happened to read an article about it, start some research and figure it out. 

Beginning treatment at age 5 slowed the atrophy and scarring that characterizes most PRS patients. His symptoms and pain went into remission at age 5 with the treatment of steroids and low dose chemo. He went for nearly 4 years with check-ups and no medication. We were so thankful! The remission ended at when he was 9 with a stroke-like episode out of nowhere! I knew it the PRS was back because he is right-side affected and the stroke-like symptoms were left-sided. 

His symptoms had changed. He was older, growing like crazy and the pain was more widespread. The scariest part was the stroke-like episodes. He would lose the use of the left side of his body including vision and speech. Eventually, we were sent to Dallas to see specialists. They put together a team of Rheumatology, Neurology, Dermatology, and Pain Management. 

We found that he was having small brain bleeds and a few scars in his brain (like the ones that happen on the face). He went back on steroids and light chemo hoping to stop the brain bleeds. The stroke symptoms were less often and finally stopped altogether, the PRS pain was some better. BUT he began to have horrible electric shock pain in his right eyebrow area. It was so strong it would make him jerk away, wake him up at night, make his face flush and at times he was almost inconsolable.  No pain meds could touch it.

The PRS causes scarring and atrophy. There were also small areas of the brain affected. Now it was apparent the Trigeminal Nerve had also be damaged. (Click the link to learn more about Trigeminal Neuralgia) Can I tell you how painful this was for the whole family? Here was our precious boy, who looked strong and healthy on the outside with debilitating pain. His childhood was on hold. He never knew when the pain would strike. At first, it was once a week. Then once a day, until he was in constant pain with no relief. 

We tried so many medications. Nothing would stop it but we did get his pain levels lower gabapentin. He powered through doing his best to be a kid and have fun.  He even endured 11 of hydrocodone shots to the eyebrow only to have his face go completely numb and the pain to remain. It was a low point. He felt hopeless. 

This was the time when we began using essential oils. They actually helped.  We found an oil that helped him get to sleep even in his worst pain. Another blend that helped bring the pain threshold down, and another for helping his mood. I was an oily momma! I did my research and found not all oils are the same. He had enough issues without adding in low-quality supplements. We chose Young Living after lots of research. 

I was completely upfront with his doctors. His condition is no joke and I wanted to make sure everything we did would cause no harm. His doctors were supportive! They kept notes on what we were doing and one even mentioned that many of her patients were have better success with oils with no side effect than the medications. 

Fast forward to today.  We moved to the Kansas City area and needed new specialists. The 8-9 hour drive to Texas just wasn't going to work. 

I mentioned this is a rare disease. Most doctors we have seen have never had a patient with his condition. He is usually the only one they will see. This was true in Kansas too. Once again they were amazing about doing research, contacting his previous doctors and putting together a plan. 

He had had another brain bleed before we moved but no outward symptoms. Thankfully, he hasn't had any deficits from these!  We had discovered on our own that diet and exercise actually helped more than anything with keeping his pain levels down!

In Kansas, they offered us integrated pain management. He receives acupuncture, massage, and physical therapy. Recently he even got to learn about biofeedback! He was happy they didn't introduce any new medications. They confirmed a good exercise routine and diet was very beneficial along with better sleep habits.

In less then ten months he was able to taper almost every medication he was on. He is now only taking his low dose chemo once a week and one other morning med!  He was able to try out the Cefaly device and we found it beneficial and now have one at home. He does Taekwondo at least twice a week which helps keep him active. 

One of our biggest worries for him was being able to work a regular job someday. Many people with Trigeminal Neuralgia struggle with daily activities because of the pain. Fortunately, he is doing so well he is now working almost full time (for the summer) and is going to try out the junior college in the fall. 

He is taking it all in stride and doesn't seem to dwell on how far he has come. He always plugged along and pushed himself. Now he is able to function with less pain and branch out!  

This does NOT mean he is cured. The pain still pops in and essential oils are still helping along with new strategies learned from his Pain Management Team. He will always have to be proactive about his health. Every person with PRS and TN are different. As far as the doctor's research goes only my son and one other person are known to have both conditions. 

I share our story to give hope and help others who are struggling not to give medical advice. Don't give up and keep advocating.

"Hope is the thing with feathers" Emily Dickinson