Hi,

I have been trying to read posts about other parents of kids with alopecia. I found my 10yr old daughters first spot of A on the back of her head near the nape of her neck. It was the size of a quarter. About a month ago I found another by her right ear. For some reason it hasn't gotten as big as the first one. But sadly the first one is getting larger and going across the nape, so it's about an inch and half long now.
My gal has now 5 auto immune disorders and hypothyroidism is one she developed at around age 5. She also has psoriasis, RSD and Type1 Diabetes at age 8.
I am saddened for her as it seems that every year or so she gets something else. I know that no one can really tell what's going to happen, as in whether or not she's going to lose all her hair or in places that can be seen by others but I really don't want to go through the waiting and watching. So far she is doing well with it because she can't see it. When we went to the derm I told her why we were seeing him and she said that if she lost her hair she would wear a scarf like Izzy did on Grey's Anatomy... (lol) or she would wear a wig. I think my only hope is that it doesn't get worse or that she doesn't lose her eyebrows and eyelashes.

I do like reading all your experiences because in some weird way it makes me feel better.

Thanks for listening...
Maria

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Replies to This Discussion

Dear Maria,

I wish you and your daughter all the strength you need to cope with all the health issues. I try to keep my son as healthy as possible. He started losing hair at 18 months and lost everything by the time he was 3, including eyebrows and eyelashes. However, he is now five and is doing well. His eczema has just about cleared up and he has lots of peach fuzz. I just try to keep the family eating as healthy as possible. Work on that immune system as much as possible with the right supplements. Everything makes a difference. Best wishes to you.

Angie

Have you ever checked into Celiac Disease or whether going gluten free would help? I have spent countless hours online trying to make sense of it all. I do know that it seems autoimmune disorders lead to other autoimmune diseases. It would be a shame if it all stems from gluten. My daughter is 9 and at first she wore a hat. She decided that she didn't want to wear anything on her head because it itches. It is amazing that she reasoned "mom if my friends didn't have hair, I would still be friends with them". She is handling it all better than me most days. When people ask what happened to her hair, she simply says, "It fell out" and then they all seem to just go play. I thank God everyday for her strength. I also pray that one day she won't have to be so srtong.

Hi Maria,
We are sharing your journey and you have our full understanding. Our daughter is 8 years old and has the ophiasis pattern ( a lovely variation on AA on the back of the head at the margins, currently about 40% loss). We are using the steroid cream but doesn't seem to be doing anything. We are having good days and bad days and I know what you mean when you say reading others' experiences helps.
Alice xx

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