"Maggie - my little guy (not so little any more) was about 18 months old. It fell out 2 weeks after vaccines. I remember the feeling of hopelessness and wanting to “fix” it. Thad what moms do right? I want to…"
Hi! My name is Cindy. My husband (Kipper) and I have 2 handsome little boys. Caden is 9 years old. Duncan is 7. Duncan has alopecia universalis. God has given Duncan "an extra dose" of personality -- he is such a joy. My husband and I think he is beautiful bald!
Thanks, my son is gonna be 4 years old on the 17th...I showed my son the picture of Duncan and he said mom that's me : ) my son has never met anyone with AU we have come across a few kids with AA. I also have two other children that have AA..I wish I would have known about camp Canadensis sooner because I would have probably been able to take my three children to meet other children with AA, AU I hope that one day we will all be able to meet up.... tell Duncan Damien says hi....
thanks very much for writing back. I've been going though so much emotions right now. Yesterday when i found out i shaved my son's hair completely. I showed him in the mirror his hair cut and he loved it. he couldnt stop feeling his head and smiling. It broke my heart some because i know that it might be the last time for him to see his hair. But i figure if he gets used to it now he will be fine. I've been trying to look for support groups but i just cant seem to find them either.
I'm happy to hear the day went well! I have heard of doing a talk in school, but never a letter. That is a great idea, maybe a good one for when she starts PS--I worry the other parents will think she is catching, like ringworm. We just got back from vaca, and it was great, though Gracie learned to climb out of the pack and play--at 19 mo!! She's too young for this business!! :) But I am glad summer is ending, my 4 year old will go back to PS, and this year since Gracie is not napping in the am, I plan on doing lots of one on one stuff w/ her that I did w/ my son, so I'm excited for the fall!! Next year may be a different story when Jackson goes to all day K--that will be sad!! :) Angie
Cindy, that is too bad about Duncan worrying about his hair at Kindergarten. It makes me realize that this disease and its ramifications are not a linear process, that acceptance can turn to grief, ect. I worry about when Gracie becomes aware of her disease, and how that will look. I've got awhile. She got lots and lots of regrowth, and then a few more spots started too. I guess that is normal. We will be seeing a well know hair loss specialist in Sept. Not sure if we'll hear anything different, buy I am tired of hearing from her derm that she has AA, but her ped says hold out hope that maybe it is not autoimmune alopecia. I hope to get a final answer! The steroid cream maybe helped, or maybe her hair would have grown back on his own anyways, but it causes this big dent in her head that her ped thought was her plates not coming together right. Turns out it was a side effect that the derm was able to pinpoint, and it is reversible. We're going w/o tx for now to see what happens. Luckily we didn't look further at it in the meantime w/ a CT scan!! I will be thinking of you as school starts, and I hope it all goes very well for Duncan. Keep me updated on how it goes this fall! :) Angie
Well, she got her 1 yr shots around mid Jan, and the hair started falling out mid feb. I'm not sure what all shots she gots, the usual 12 mo ones, there were a bunch. I have heard hair loss can be linked to the Hep B vaccine, which I believe was one of the ones she got. No, they will never say anything bad about vaccines as to not discourage anyone else from getting them. I used to feel drs knew everything, and folks who were skeptical were idiots, but I now know different. I too do not think that private school is hiding her away, but I think my husband has a harder time thinking about this as he doesn't want to think about this--he did not believe me when I wanted to get her in to the doctor after she had lost a bunch of hair, and we got in a huge argument that night. He later admitted he wanted to put his head in the sand. I have her right now on a steroid cream--betamethasone? something like that, and I saw yesterday she is regrowing hair in her original spot of loss--lots of tiny white hairs. It was exciting to see, but I know it may be very temporary. We see our derm in a couple of weeks. Yes, I agree it is different w/ girls, but what an amazing story about your little boy. Duncan sounds very strong, it sounds as though you all have handled this very well. I keep thinking that since this all started before she knows what is going on, I can freak out now and get it over with, so I will be in a much better spot to help her--as opposed to being just as shocked as she is. However, my almost 4 year old said to me the other day, is Gracie losing her hair? I know he does not notice it, but he has heard us talking about it. How does your older child feel about Duncan's situation? By the way, how small is your school? We have a private Christian school near us, but it is a bit large--I think my friend said there were 60 Kindergarteners, and the HS/MS is at a different location.. I'm wondering small, but how small would be good, as I there are very very small schools, but I worry about the education level at these--I'm hoping my son will be an engineer, he already is showing signs of being mechanically inclined!! ;) Angie
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