This boy has another medical crazy thing happening to his body. Over the summer our pediatrician recommended that we get a second opinion on his birthmark that keeps changing. (not to worry you mom but I'd get a second opinion if I were you.... as she was reading over his chart and what the skin doctor had sent over....Ive been wondering what she saw in that chart ever since)
But she said it was really hard to get into this particular doctor and could take months. In the meantime we decided to keep his same appointment with our other skin doctor. There were some white patches on his body that I wasn't sure would still be there once his summer tan went away. We have taken pictures but just wanted to see since one big white patch went on his waist line around his birthmark. At that appointment they said he has vitiligo on his knees and waist, prescribed a cream and ointment, handed me a brochure and said see you in two months. We went to get the prescriptions filled and it was over $600 with insurance. So we decided to wait until we saw this pediatric specialist to see if they recommended the same medicine.
And in the meantime I googled and researched everything I could about vitiligo. Joel also started getting spots on his feet.
This is a basic picture of what vitiligo is. Its an autoimmune disease that is mainly cosmetic, its very random how it spreads and forms and if you treat one spot it can still form in another.
Our appointment was yesterday and we had to cancel then make it again because of massive flooding that closed the only way out of our neighborhood. The first time I called they rescheduled us for October but once our road was open again Brent called to get the appointment back on. He didn't want to wait another month.
Now after seeing this doctor I know now why she is so good and why it takes so long to get an appointment. Shes good, takes her time, doesn't rush and answered all my questions. She also had another doctor with her that also has vitiligo - Joel at that point wasn't trusting any doctors but maybe the next appointment he'll be intrigued that she has it too.
Basically the white around Joels waist is the vitiligo eating away at his birthmark.
He has a 1 in 20 change of developing melanoma and she recommended we get the birthmark surgically removed. Then she thought for a moment and said that the vitiligo is basically doing that job for us. To remove it they would take a huge thick chunk out of his side, pull his skin tight, give him tons of sitches and then let it heal. (she was describing this and even drew on his side where they would cut. its no wonder Joel started to freak out sitting there) But she was intrigued since the vitiligo on his waist is attacking the birthmark. So we are waiting to see what that does. We aren't supposed to put the medicine on that part and let it run its course. She had never seen that happen before and wanted to contact some collegues in california who were the best in the medicine world. All I could think about what how amazing it was that God was letting his body take care of this on its own.
They did this really cool light treatment where they put him under a type of blacklight (but a medical looking one) and his whole body lit up where the vitiligo was. He has spots on his eyelids and his skin looked like little snowflakes. So that was a little sad to see. We have some new medicines to put on his spots. We hope it sticks mainly to his lower half of his body and not spread to his face and hands.
The doctor said this is genetic but from what I've read a lot of people have a lot of success going gluten free. So we will be doing that. We are also taking Joel off dairy because lately he's been throwing it up. It started towards the end of school when he started to buy his school lunch. He didn't like sandwiches and he couldn't bring peanut butter in his class so I let him buy lunch. He loved it and would come home and tell me all about his choices that day. He would eat broccoli and chicken salad and all different foods. Except they said he couldn't get the bottled water he had to get the whole milk. Its been years since he drank milk. Brent's allergic so we've never had the kids drink much milk. I put extra money in his account for him to get the water but he was too shy to ask. He's such a rule follower at school (not so much at home) but if they told him he had to take milk then he was going to take milk. He was completely off dairy only a week this summer and ate some cheese to prove to me he wasn't allergic (being his Joel ornery self) and he had to run to the bathroom after. But he knows now and its easier to keep him away from it. Joel loves a good piece of bread so that will be hard for us all to give up. He's "a if I can't have it none of you can have it either" person. I can't blame him.
So if anyone has any experience with vitiligo or any gluten free meals please share with me!
