My daughter was diagnosed with Alopecia Areata when she was probably 2 1/2. When she first started getting "spots" as we called them back them she proabably had 2 or 3 that progressively got a little bigger. Eventually they grew back on their own, until after that anytime she would get any sort of illness she would lose some hair. So we took her to pediatrican and they really did not know what to do with us. I basically had to beg to have any sort of tests done and eventually found out she has a elevated thyroid (which has nothing to do with her Alopecia). They finally just gave us a $80 foam and sent us into the local dermatologist. By the time we got in there they took one look at us and said "oh she is too severe for us to look at" made us an appointment in Omaha and that was that. It was a horrible experience - we waited a hour and 1/2 and he talked to us for 5 min. He told us that since she had just had spots she would grow out of it and it was just the "luck of the draw" that she had it!! That we had to use the Cortizone Oil EVERYDAY.. So her hair at that point started growing back a little, and the oil would thin her skin and she would have little sores. Me being a mom hated that - so I would stop using it for a little bit and she would get a cold or something and she would get another spot and it would be bigger. So then I would feel as if it were my fault and I could do more for her. That me not following Dr.s orders somehow caused it. So we acually switched pediatricians and this DR. checked her thyroid again and then sent us to Children's Hospital in Omaha for blood tests to see if maybe she was allergic to something, and also sent us to a Pediatric Dermatoligist affiliated with Children's just this last May. It was a tough appointment but a good one also. Dr. Jill Nelson, she was very good with kids but she basically told it like it was. She told us that it was not our fault that the oil was not proven to do anything, and why put a 4 year old through that if we didn't have to. She did warn us that Megan could possible lose all of her hair and eyebrows as well. Up to that point no one had really told us anything. The other Dr. told us that she would grow out of it and now we know that she possible probably won't. She also said the only thing really proven to help at all was the injections, and that she wouldn't do that to a child until they were old enough to understand it and ask for it themselves. She just said make her as comfortable with herself as you can teach her what she has, so when a mean child (which we know are out there) says "whats wrong with you" she can say I have Alopecia whats wrong with you !!! So, at that time she had maybe 3 spots that were maybe golf ball size, and then in November she started losing more and since Christmas she has lost nearly 80% of her hair.We did get her a wig this last month but she has only worn it a couple times. It is just there is she wants it, I don't want to push her. We wanted to wait until she asked for something, but we will catch her looking at herself in the full length mirror at dance . She has also asked her Grandma if her hair will ever grow back.... At this point we are just beginning our jouney without hair. We are trying to get in a support group in Omaha that way Megan can be with other little girls that are going thru the samething. I have found a couple moms online that do not know it but have been so much help! I thought I was crazy because I have been an emotional wreck lately. So here goes I have never blogged before but I am hoping I can vent out my fears and frustration on here and not at home .
No comments:
Post a Comment