Replies to This Discussion

Permalink Reply by Lisa Leppert on February 28, 2012 at 5:32am

Nikki,

I know it seems like alot now. Unfortunately, there is not alot they really know about Alopecia and it affects everyone differently. As for the genetics part they may not have known they were even a carrier. My daughter was diagnosed right before her 2nd birthday (Sept 2007)and by Christmas she had no hair on her head. She has lost her eyelashes twice but they have grown back. Neither her older sister or twin sister have any signs of Alopecia. The best thing is to stay positive. My little girl is surrounded by people that love her just the way she is and is doing very well as a kindergartener this year. Hang in there!! This is a great site for support and information.

Lisa

Permalink Reply by kdeff on February 28, 2012 at 10:20pm

Hi, just wondering about your daughter ( she's beautiful by the way) starting school. We have thought that when she's school age, it would be best to try private school because of the smaller class size and things. It seems like it is easier to explain things to a smaller group. We have always been public school people, but since AA, I'm not sure any more. Any thoughts?

Permalink Reply by Jen on February 28, 2012 at 9:27am

My son was diagnosed at 2 years old (about a year ago). After his first birthday he lost all his hair and eyelashes/brows. In my limited experience, there isn't much the dermatologists can do. I met with "the best" and he was arrogant and certainly not helpful. He prescribed steroid creams. I decided not to do it since the other parents I've talked to said that once you stop the creams the hair falls out again. I agree with you...I don't want to do painful steroid shots either or immune suppressing creams. So, I've chosen to try some alternative therapies right now. Other than that, we've decided that if the hair doesn't grow back ...that's ok. When he is older if he decides he wants shots or a hairpiece then that'll be his choice. I agree with the other post...remaining positive is key. I think there is a combination of genes that play a factor and in our family I think it's the combination of the gene on both sides that does it. Although I'm just totally guessing I don't really know. So I agree, your donor may not have known at all and really everyone has some sort of disease or genetic abnormality in our families.

Permalink Reply by Nikki - Coley's Mama on February 28, 2012 at 12:08pm

Thanks, guys! I won't lie, I've shed tears for my little man thinking of the future. But at the end of the day, my theory on it is that if he is going to be totally bald and hairless, there is nothing to be done about it. And we will raise him to love himself in a very supportive environment whether he has 20 feet of hair or none at all. Also, his pedi said that this just may be normal for him and he may grow everything back and never lose it again. But who knows. This seems to be a very individualistic thing for everyone and I think that's what makes it so hard. You never know what is going to happen! I do appreciate the insight, especially on the genetic side of things. I didn't know how it worked! But I should probably let the cryobank we use know that Cole developed AA once it is all said and done. Honestly, I don't think we would have chosen another donor for our 2nd baby either way.
I also like knowing that other parents are feeling the same way about treatments.

Thanks again for the support, ladies :]

Permalink Reply by Jen on February 28, 2012 at 4:56pm

I have twins. One has it and one doesn't (so far). It is one of those things that can come and go or can stay forever. My dad had it for a couple years...it came back and has been back for over 30 years. You're right it's individualistic and you just never know. Best you can do is make your son as healthy as you can. Personally, I wonder if vaccines had a role at all for our son. I think the vaccines work on the immune system and since AA is an autoimmune disorder it makes me wonder! Obviously a personstill has to have a genetic predisposition but I just wonder if vaccines have played a role.
Also, I cry too especially when other kids ask him about his hair. It's heartbreaking. But, I think I'm going to make sure he handles it with a sense of humor! I think that will help a lot. Just my rambling thoughts for what they're worth :)

Permalink Reply by Nikki - Coley's Mama on February 28, 2012 at 7:14pm

That's crazy, Jen. I was wondering about vaccines as well.
I have been saying that if he ends up completely bald that we will turn him into a badass with temporary tattoos on his head and a pirate do-rag lol
I like humor ;]

Permalink Reply by Nikki - Coley's Mama on March 1, 2012 at 8:53pm

I took Coley to Children's Hospital today and saw a doctor we really really liked. He told us it is definitely AA and not an allergy or anything as far as he can see. Especially due to his diminished eyebrows and his lashes. Though, he said some people do well on gluten-free diets with AA. I don't know. Anyway, he gave me some handout sheets with some information about alopecia on them, which were helpful. He also gave me a sheet with some sort of homeopathic oil treatment I can make at home. I think we are just going to see where it goes over the next year or so before we bother trying anything. It seems as though treatments don't really work anyway as far as I can see? Though, I am sure it is different for everyone!
Have any of you tried oil treatments with your babies?
Thanks! :]

Permalink Reply by Jen on March 1, 2012 at 9:08pm

haven't tried oil. my kids have been on GAPS and now gluten free for 2 years....nothing.
i was thinking of trying a new diet approach but do think that gluten free is generally good for most people anyway since gluten can make the immune system sluggish.
for what it's worth!

Permalink Reply by Nikki - Coley's Mama on March 1, 2012 at 9:32pm

Jen, what is GAPS?