Can I Whine for a minute...

lala5507 · May 2014

Let me start by saying I thank God every day that dd's "condition" is not life threatening in anyway. I know there are a lot of scarier autoimmune diseases. I've posted here before that my 3 year old has been diagnosed with vitiligo. It's an autoimmune disease. Her body stops making pigment resulting in patches of skin with no color; especially in places where there has been trauma (like a skinned knee) or friction.

So anyway... she has been responding well to a treatment the dermatologist has us doing (some pigment is very slowly coming back) and she hasn't had any new spots pop up in almost a year. Then all of a sudden she has new patches on both hands and both feet. I just hate that it's spreading and I can't do anything to stop it. I hate that she can't just fall, get a scrape, and having it be gone in a week like a normal kid. I worry that if it progresses a lot that kids will tease her because of it or that she will hate the way she looks because of it.

Like I said, I realize it could be so so so much worse. But still, it sucks.

Do you want to whine about anything?

billiburrows · May 2014

so sorry to hear this. my family has vitilligo too. i'd be sad if my kids got it too.

as far as me whining about anything....don't even get me started ;-)

4EvR&4AlWz · May 2014

Sorry to hear this....as I had mentioned before, definitely keep this in the back of your mind: http://www.aad.org/dermatology-a-to-z/for-kids/camp-discovery

Even "minor" cases of vitiligo can be accepted for camp and it's a great place to see others who also have vitiligo and other much more serious diseases. My SIL has a very disfiguring skin disease and I know she went through horrible "made fun of" stages in school because of it. It wouldn't hurt to start early with a psychologist to help in making sure it's dealt with from appropriate measures. Are you seeing a pediatric dermatologist (unfortunately, Pgh's options are limited) but there are some fabulous ones at Geisinger (who host one of the sites) and Penn State Hershey who may also have some more coping help.

northhillsbride · May 2014

I'm sorry your daughter is going through this.

I developed vitiligo about 8 yrs ago on my face only and, despite using sunscreen, it's still pretty apparent. (Especially now that I live in TX and my "normal" skin tans from just heat!) I know that, as an adult, it's much easier to deal with, but I do still get questions and/or stares over it.

I like Kristin's suggestion of the camp as your DD gets older. It will boost her confidence to meet other kids with similar skin conditions, I'm sure. Also, just keeping communication open with your DD and recognizing her feelings about it (as I'm sure they will develop as she gets older), will help tremendously. Good luck!

lala5507 · May 2014

4EvR&4AlWz said:

Sorry to hear this....as I had mentioned before, definitely keep this in the back of your mind: http://www.aad.org/dermatology-a-to-z/for-kids/camp-discovery
Even "minor" cases of vitiligo can be accepted for camp and it's a great place to see others who also have vitiligo and other much more serious diseases. My SIL has a very disfiguring skin disease and I know she went through horrible "made fun of" stages in school because of it. It wouldn't hurt to start early with a psychologist to help in making sure it's dealt with from appropriate measures. Are you seeing a pediatric dermatologist (unfortunately, Pgh's options are limited) but there are some fabulous ones at Geisinger (who host one of the sites) and Penn State Hershey who may also have some more coping help.

I bookmarked that camp the other time you posted it. I'm keeping it in my back pocket incase we ever need it. It's great that camps like that exist. She is seeing a children's dermatologist (part of Children's hospital). We go ever 3 months, and they've been really great so far. Dd is so young right now that her "spots" don't bother her at all. I just pray that I can do my job as a parent and teach her to be confident with her body no matter what comes.
I really appreciate the info you have given me. Thank you.

egpitt22 · May 2014

You're able to whine, that has to be hard to deal with.

My whine is that baseball is cancelled again today due to this craptastic weather. I'm grateful for a free evening, but at the same time, they are going to be making up so many games at this point, we'll be playing until July. And Jake is going to be sad, they cancelled Monday night's game, too

gwennythepooh · May 2014

4EvR&4AlWz said:

Sorry to hear this....as I had mentioned before, definitely keep this in the back of your mind: http://www.aad.org/dermatology-a-to-z/for-kids/camp-discovery
Even "minor" cases of vitiligo can be accepted for camp and it's a great place to see others who also have vitiligo and other much more serious diseases. My SIL has a very disfiguring skin disease and I know she went through horrible "made fun of" stages in school because of it. It wouldn't hurt to start early with a psychologist to help in making sure it's dealt with from appropriate measures. Are you seeing a pediatric dermatologist (unfortunately, Pgh's options are limited) but there are some fabulous ones at Geisinger (who host one of the sites) and Penn State Hershey who may also have some more coping help.

I have to say - I'd hold off on the psychologist. I have a very noticeable birthmark on my face and went through a lot of teasing as a kid. But I was FAR more uncomfortable when my mom would try to take me to support groups and things of that nature to cope with my 'disfigurement'. I'd give your daughter time, support her and if she down the road wants to talk about it with someone, fine. But as someone who went through this as a kid - I hated being reminded of my difference and people wanting to chat about it.

Can I Whine for a minute...

Re: Can I Whine for a minute...

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