What a rough week. Earlier this summer, we noticed some strange white splotches on Knox’s ankles. This was right after our vacation, so he’d been in the sun a lot and was pretty tan. It looked like someone had dribbled sunscreen on his ankles and left these odd spots. I noticed a few others scattered around: two behind his knee, on two of his fingers, on his neck, his back and his shin. I quickly Googled and figured this must be some sort of common eczema-related thing, seeing that there were lots of posts about it, saying it was noticeable in the summer months when skin was darker.
I kept it in mind, but tried not to fret over it. The past couple weeks, I couldn’t get it out of my head. I asked anyone I could think of with some sort of medical knowledge, and I finally took Knox to the pediatrician Tuesday. He thought it looked like an inflammatory response to eczema that caused some hypopigmentation. That should have made me feel better, but I had this gut-feeling that it was more than that.
My stepdad is friends with a dermatologist and called for her opinion. She said that I should send her some pictures of Knox’s spots, so I did. Her response? “Looks like early Vitiligo, but I’ll need to see him to be sure.” The thing I’ve feared all along, coming into focus. I was pretty hysterical, even though I had been pretty sure that’s what it was. It was a rough night of crying, fervent praying and more crying.
The next morning, I drove Knox into the dermatologist’s office where she confirmed her suspicions and mine. We were told that there is nothing that can be done, it may spread, it may not, we’ll have to wait and see. If you don’t know, this disorder causes depigmentation of the skin and can spread all over the body, across the face, torso, extremities, etc. It’s not a “health” problem per se, but it can be a major psychological one for anyone, especially a child, dealing with a marked difference in their appearance. As parents, we only want our children to have a good life, and I just cannot stomach the idea of this taking over my beautiful boy and causing him any sort of hardship or difficulty.
Vitiligo is an autoimmune disorder. I’ve been dealing with my own mystery autoimmune issue for the past year of my life, and let me tell you this with certainty: AUTOIMMUNE STUFF SUCKS. But I also know this- when autoimmune issues are at play, nutrition absolutely can make a difference. I’ve read so many stories of people reversing their autoimmune diseases by going Paleo and reducing the inflammation in their bodies. So for now, we are focusing on getting Knox great vitamins and nutrition- that means eliminating Gluten fully from his diet (this is a bread-addicted child) and moving towards Paleo. His pickiness is extreme, and I’ve met failure head-on many, many times already in the past couple weeks attempting to switch his chicken nuggets to a gluten-free variety (I’ve had suspicions of a another issue for a while now and decided to act on it). He has yet to eat a single bite, and I’ve probably tried five different kinds, including homemade.
I don’t know what this is going to look like. I beg God to spare my children from this stuff. I pray this is an isolated incident that will not spread further, and that my sweet Brody will be spared from any health issues. It’s very scary when things happen to your children that are outside of your control. Knox is already dealing with Autism, and the thought of adding one more hard thing to his life is killing me and breaking my heart.
I am so thankful for Knox’s sweet spirit. He exudes happiness, and he has no idea about any of this. Our next step is to take Knox to a pediatric rheumatologist to make sure there is nothing else lurking (please join us in praying that there is not!!), then we’ll look for another dermatologist that has experience with the laser therapy to treat his existing areas. My main concern is to keep them from spreading and from anything new occurring. The areas he has now aren’t super noticeable, and I just hope it stays that way!
Please be in prayer for Knox and for the health of our family, in general, as we walk through this new diagnosis and try to do what we can for Knox. This boy melts my heart, and I just want his life to be everything that he deserves.