Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Payton's Story

By definition, Guillain-Barre Syndrome is considered an acute inflammatory disease of the peripheral nerves. According to John's Hopkin's Medicine, a chronic form of this illness may present with progressive symptoms and result in Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). A key difference is that CIDP is a slowly progressive ailment that usually responds favorably to corticosteroids. I was finally diagnosed with CIDP in mid-November 2016 after my consultation with a different neurologist who happened to be working with the subacute facility at the time. My history of relapses and plateaus after IVIG treatments was a cause for concern for this particular neurologist (he's the 5th or 6th neurologist I've seen throughout my entire care) and against the advice of a world-renowned neurologist who specializes in GBS/CIDP, he put me on a high dose of corticosteroids, which jump-started my journey towards walking again. This just goes to show everyone how diverse this particular disorder is and that one size does not fit all for treatments, even in cases that may be similar. Today, I take a break from blogging about my journey in order to highlight a special young lady who reached out to me in hopes of inspiring and motivating others. She is resilient, determined, in high spirits, and could use some positive vibes and prayers sent her way! Remember, the journey may be long, but each little victory adds up. Just being alive is enough to be thankful for regardless of the pain and residual symptoms we may experience. In my humble opinion, it's a small price to pay to remind me to be grateful for each day.

Hi, my name is Payton. I am 14 years old and have CIDP. When the symptoms started, I was just 6 years old. I was given the Flu Mist, along with my mom, brother, two friends and their mom. Two weeks after, I began having the symptoms of GBS. My hands and feet were tingling, and I began falling very, very often. My mom brought me to the on-base doctor, as we are a military family. The doctor blew my mom and me off, saying I was faking it because my dad was deployed. My mom begged for more testing, but the doctor said, and I quote, "I've been doing this longer than she's been alive. She's fine.", which my mom began to believe. A few weeks after, my vocal cords were paralyzed, I had no motor function, and I had lost almost 40 pounds. My mom began hearing about GBS from my grandmother, my dad, and the show House (ironic almost). She took me back to the doctor, demanded testing, and then she sent us to Augusta, Georgia, to the children's hospital there.

They did a bunch of testing and finally revealed that the Flu Mist was not helping my immune system, but attacking it. I was diagnosed with GBS, and was set on a course of medications. When it didn't go away, I was diagnosed with CIDP. I was put on a course of IVIG treatments for 2 1/2 years, and when they said I was better, we stopped. I still have constant pain in my legs and hands and awful motor function. I am able to walk, just not very well. We thought that was the end. But now, many years later, I am relapsing.

We are now living this all over again: more IVIG treatments, more specialists, and more tests. Prayers are welcomed and encouraged. Thank you.

"What a trooper" is right! What a brave, brave girl to have to endure something this awful at such a young age. It is even more devastating to hear that she is currently relapsing. I just want to clear up the fact that though it was found the Flu Mist was not helping her immune system, it is a very rare occurrence of 1 in a million. In 1967, there was a small uptick of 1 additional case of GBS per 100,000 people who got the swine flu vaccine. It is unclear whether there is a link between the Flu Shot/Flu Mist and GBS/CIDP for other years. The reason why it is still asked on paperwork today is probably because the forms being used haven't been updated since out of sheer laziness. According to the CDC, in the United States, an estimated 3,000 - 6,000 people develop GBS each year on average whether they received a vaccination. Studies suggest that it is more likely that a person will get GBS after getting the flu than after vaccination. Severe illness and death are often associated with influenza, so make an educated decision when it comes to deciding whether or not to get vaccinated. Hearing Payton's beginning story is infuriating because of how dismissive the first doctor was. From the many stories I've read of other people's personal account, a lot of doctors seem to be when it comes to GBS/CIDP in particular. This is why I am so passionate about opening a business advocating for those who need it, not limited to suspected GBS/CIDP patients. More on that in a later post! I can tell that this girl is a fighter and she will pull through. GBS = Get Better Slowly. You can and you will bounce back from CIDP. Thank YOU, Payton, for sharing your story with me and allowing me to share it with others. Sending positive vibes and prayers your way! You got this!