This is a tough post for me to write. I had Graves disease when I was pregnant with her. In early June she went on a field trip to the zoo and came back with a halo nevis mole (mole on her neck that was pure white around the edges), and white spots around her right eye and her entire right eyelid was white. She had a faint white patch on her forehead. I waited a week and then called the dr. for a referral to a dermatologist. I knew it was vitiligo. We’ve been on Protopic since early July (1 month after the 1st spot appeared). Since then her face seems stable. I had noticed two faint spots on her chin that don’t seem worse and pinpoint specks on her knee, elbow and 3 toes. They don’t seem to be growing, but just their appearance makes me worried.
At this stage, it’s not very noticeable. Her bangs cover most of it. However, it’s her future that I’m concerned about. Even though I know she will be supported and loved, standing up to teases will be the more difficult task. Of course I’m grateful it’s not a disease that affects her physical health, but sometimes the mental health issue is more concerning.
My biggest hope is to document her treatment protocol and timeline so other parents will have something to refer to.
- First spots: around June 2, 2016
- Protopic started July 2, 2016
- As of July 24, no improvement…yet.
She’s had bowel issues her whole life (as have I, and her older sister who gets bad eczema on her hands, usually in the winter). We’re on vitamins right now (kids gummy multivitamin, b12 gummies, lots of sunlight right now, and eating lots of peaches, watermelons and cantaloupe for beta-carotene, and peas and orange for folic acid and vitamin C.
Wish us luck on this journey!
UPDATE Aug 13, 2016
After about 6 weeks of putting on Protopic and about 4 weeks of Ginko Biloba (she’s stopped taking it now), my daughter is getting some repigmentation in her spots! So exciting.
Update Aug 27, 2016
Depigmentation continues. I would love to know if anyone else has had similar results? I’d of course love to know what her future with the disease looks like. Her digestion issues continue, and I’m worried this will be a trigger for her in the future, although, as she get’s ready to go to Senior kindergarten, I am just relieved her condition is pretty much unnoticeable at this point.
I will post a picture soon to show it’s progress! The spot by her eye is filled in (a little darker), the spot on her cheek is almost gone. Her forehead spot has filled in and her left eye (not pictured), is slowly blending into normal but still the entire eyelid.
UPDATE: Oct 2016
Almost all of the spots completely disappeared, except now the newly pigmented skin looks a little lighter, like it’s trying to come back. It’s still smaller than this image above, though. However, it’s a sign that her body is still fighting itself. The good news is that the Protopic cream is working.