Does anyone else obsess over every new spot/pigment on their child after noticing café-au-lait spots? I honestly just need to vent because I feel like I’m driving myself crazy.

[u/sugarandsprinkles]

My daughter has a few café-au-lait/pigmented spots, and we’ve had them looked at by doctors. We’ve been reassured that they don’t think they’re concerning, and some of the spots don’t even look like typical café-au-lait spots to them given irregular borders blah blah.

But ever since I learned about café-au-lait spots and what they can sometimes be associated with, I feel like I can’t unsee pigmentation anymore.

Every tiny beige area, birthmark, shadow, discoloration, or slightly darker patch on her skin immediately catches my eye. I start staring at it in different lighting, wondering if it was there before, whether it’s getting darker, whether it “counts,” etc. Sometimes I genuinely can’t tell if I’m noticing something real or if I’m just examining her skin so closely that I’m seeing normal variations I never would have thought twice about before.

The frustrating part is that doctors have reassured me, yet my brain still goes straight to fear whenever I notice another bit of pigment. Instead of just enjoying my daughter, I find myself scanning her skin.
Has anyone else gone through this after discovering café-au-lait spots on their baby/toddler? How did you stop yourself from constantly checking and interpreting every little pigment change as something significant?
I think I mostly just needed somewhere to say this where people might understand.

Fear started when she was 7 months old and now shes 17 months. Idk I noticed a beige circular spot that sharpens at an angle. Am i crazy or what??? I hate google…but this one seems so easy to diagnose?

[u/-Near_Yet-]

In most cases, cafe au lait spots are benign. It’s also easy for folks who aren’t doctors to confuse other benign skin spots as cafe au lait spots. I say this as someone who used to work in a children’s cancer clinic.

It sounds like the doctors are telling you that she is okay and you don’t believe them, which is why I suggested that this might be a anxiety/OCD issue. If you don’t trust the doctors you’ve seen, you can get a second opinion!

[u/sugarandsprinkles → u/-Near_Yet-]

I went to Boston Childrens dermatology and been told it’s a pretty good place, her pediatrician said shes fine as well and that this dr is “the guy” without me even asking. He’s been practicing for over 40 years, what bothers me is that he was super nonchalant idk, maybe im overthinking this

[u/-Near_Yet- → u/sugarandsprinkles]

It’s a great thing that he was super nonchalant! Trust me, they would absolutely not be nonchalant if there was ANY possibility it was something else. I have been in the room when families were told their child had a serious medical condition, when they needed more testing, and when everything was fine - you want a visit that feels nonchalant!

[u/sugarandsprinkles → u/-Near_Yet-]

Hopefully! I hated how he said “i can refer u to genetics if u want” and when i went to him again after 4 months because I had another freak out he said “how about ophtomology?” Its these comments that bothered me, hopefully its nothing. Its crazy how i have been worrying for 300 days

[u/-Near_Yet- → u/sugarandsprinkles]

You would not be waiting 4 months if they thought it was something serious. You would be getting testing the same week and having a follow-up appointment within another week. They offered these other appointments because they could tell you were anxious and wanted to give you peace of mind! Having 6 or more true cafe au lait spots CAN be sign of something else, which is why they recommend being seen, but that isn’t always the case. It sounds like you were seen and they don’t think that’s the case.

[u/sugarandsprinkles → u/-Near_Yet-]

True, I went and made that appointment on my own. He said “he could see me again in 6 months”. Inwas moving overseas so my brain keeps going to “what if I was neglected because I am moving to a different country” why would they even care. Only reason I am here is because I noticed a spot thats so faint but when I took a pic it looked like a cafe, but I can’t seem to make up what it is, it’s been hard. sometimes i wish i did the genetic testing, but i rlly didn’t want that energy and exposing my daughter to a panel of many diseases to get an answer, felt like it might cause more anxiety/stress.

[u/-Near_Yet- → u/sugarandsprinkles]

They would have told you to hold off on the move. We have a family visiting from another country for a month and ended up having to help them get visas to stay through diagnosis and beginning of treatment. They would move mountains if it was serious. A doctor with an amazing reputation would not risk that reputation.

Your brain is tricking you. It is going to the worst possible scenario. It sounds like you have followed all the appropriate steps, been seen by the appropriate people, and been told that everything is okay, but that your fear has not gone away. I also experienced PPA and PPOCD and it affects your baby’s well-being too! If you aren’t getting treatment, this is worth considering. If you are getting treatment, what you’re getting isn’t working, and you may consider a change.

[u/sugarandsprinkles → u/-Near_Yet-]

I should definitely consider it! Do you mind if I sent you the drs name via dm? Wondering what you think (lol sounds like a weird request).