Please tell me this is normal...

[WorryWortAgain]

I've been having such a rough time lately. I am planning to get help but it's going to take a couple of more months to start medication because I refuse to stop breastfeeding before April. Anyway, I've been worried about some symptoms that I'm experiencing but now I've started obsessing over something on my son. He has clusters of very dark eyelashes and then they are very light brown/blonde. They're *NOT* white but for some reason I'm worried that they are starting to turn that way or something. The reason I am upset is because about 5 months ago he had a couple of white skin patches and the pediatrician called them ash leaf patches. Ash leaf patches are a HUGE marker for tuberous sclerosis. Luckily I had him seen by one of the top pediatric dermatologists in a major US city and he doesn't think they are ash leaf patches. He suspects that they might be vitiligo. Regardless the fear of tuberous sclerosis is still there and now that I'm seeing these black and blond eyelashes I'm freaking that it's lack of pigment in his eye area. If this was actually happening, which I know probably isn't the case, it would be a symptom of vitiligo too but I am just SO fearful of tuberous sclerosis. I love my little boy so much and I couldn't care less if he has patches all over him or white eyelashes. I just want him to be healthy! I can't even breathe thinking about anything ever happening to him. Logically I know that these are just black bunches of lashes mixed with light brown and it makes you look twice but it still FREAKS ME OUT! I hate this illness, I HATE IT!

[glassgirlw]

Is he your first child? I was a very young mother (had just turned 20) and yes....I obsessed over absolutely everything with her. Constant worry that something was wrong. I got to the point finally where I would just raise all my concerns with her Ped doc at every appt and took them at their word that she was fine. She is almost 17 now and healthy as can be...so just try to trust the docs as hard as that can be!! I think what you're feeling is 100% normal.

[WorryWortAgain]

I have 2 children, an 18 year-old girl & a 2 year-old boy. Th first time I started experiencing HA symptoms was when my daughter was little. She had to have some testing and that set things off and then I started having migraines with aura and that started worries for myself. Then I got on Prozac and I had no real symptoms for almost 15 years. I mean I'd worry about stuff like a normal person but it wouldn't eat at me 24/7. I went off my meds to get pregnant with my son in 2012 and I was okay until 6 months ago. It might be due to a drop in estrogen or I might just need to go back on meds. I'm seeing my OB/gyn on the 19th to get some help :/ Thanks for your response.

[glassgirlw]

There is probably a lot of stress involved there too!! Big age spread between the two kiddos. ☺ I considered having another....but then decided against it as I was almost done raising the one I have haha! It stressed me out to think of starting over!! I admire you! But I would probably chalk it up to stress overload and possible hormonal imbalance. Good that your seeing your doc soon! Best of luck ☺

[Allochka]

I do the same regarding my daughter, and worry about TS too. Btw, I'm sure that if you look at smth with a fixed idea in your mind, you'l start actually seeing this thing you are fearing, your mind will trick you.
I experienced the same with my daughter - was checking here skin for those hypopigmented spots, and kinda saw 2, one on each leg. I was going crazy until I realized that there are no spots, just places with less blood vessels under the skin. But my mind played with me, because I was so fixated. Same with the eyelashes.
I hope we both will be able to shake off this fear ( and won't move to another) :)

[WorryWortAgain]

Yes, I think that's what was happening with his eyelashes. He has both dark and sandy colored lashes. There was a group of black lashes together next to groups of sandy lashes on either side and it was making me freak out that the lighter colored groupings were actually hypopigmented patches. The darkness next to the lighter coloring just made it look weird. There is no worse fear in the world than something happening to either of my children. And that's what this illness does is toy with your worst fears. I worry about myself too but it's more that I'm worried that I won't see my children grow or that they will have to live without me, not so much worrying about myself. I never had these fears until I had children. With TS, it started out as a legitimate scare. I went to the pediatrician about something completely unrelated and showed her the spots. She was like "oh, they're ash leaf spots" like it wasn't a big deal. Well, as you know ash leaf spots are HUGE deal. If you have 2 or 3 of them that is enough evidence for doctors to give a possible diagnosis. I completely flipped out and went to a dermatologist who didn't even know what they were. He called them cafe au lait spots. Cafe au lait spots are hyPERpigmented spots so I knew he didn't know what he was talking about. So I found the best pediatric dermatologist in our city and brought LO to him. He said that he doesn't think they are ash leaf spots. He said they MAY be patches associated with vitiligo but we'd have to wait and see. He asked me to bring LO back in 6 months which is coming up soon. The dermatologist is also getting ready to retire so I'll have to find someone else that knows what he/she is talking about if he is going to need to keep following up. The whole thing still bothers me a great deal but I know I need to trust these doctors as hard as it is to do so!

[Allochka]

I fully understand... You have the reason to be scared (not because I think your son has TS, but because couple of not absolutely professional doctors have given you wrong info).
Speaking about those hypopigmented spots - during my extensive googling I visited one forum where doctors give advises online free of charge. The professionals allowed to participate there are carefully picked, so they are really good and know what they talk about. Many people come there for a second opinion, when lost hope in offline docs. There were similar questions about TS and hypopigmented spots from some parents, addressed both to dermatologists and neuros. Those docs replied that if there are only 2-3 such spots, there is nothing to worry about, they happen in completely healthy people too. I have some hypopigmented patches on my chest myself, but they are very irregular, not smth seen in TS at all. And my couisin has one spot too, absolutely healthy 34 year old young woman!
I wish you luck at your 6 month follow up appointment. But my gut feeling is everything is Ok!