Hello everyone My name is Corrin and reside near buffalo ny. My 12 year old daughter has been experiencing severe hair loss for the past 18mths. Let me start by giving you a timeline description.
ODD a gymnast for several years went for a haircut around her age of 10 1/2 when the stylist noticed a patch on the back towards her neck that was bald. We kept an eye on it for several weeks and noticed nothing major at that point. It started to grow back so nothing at this point alarmed us. Well then about 3 months later we noticed around the hairline underneath from ear to ear it started getting worse. Some areas bald and some with just a sprout or broken off. Now when I say this I want to make this clear. She wasnt losing it in random patches. This was happening in a linear pattern. About 3 inches deep from the neck again from ear to ear. Almost like she was wearing a sweat band and it rubbed that entire area off. Which is something she was doing so we took her to the dr's and while running basic blood work we told her to avoid wearing the bands at gymnastics. To no avail this was not the case and all her bloodwork came back normal. Sending us now onto dermatology. while waiting 2 months to get into them some hair grew in but then some on top in the bang area started to fall out. Again almost in a square and the same area continues to fall out and grow back. Dermatology did more blood work and also a biopsy. In the mean time waiting for those they started steroid injections and a topical minoxidil treatment. Neither one of these helped after 6 months of treatments. Actually I truly believe that either it just didn't work and the condition got worse or it specifically made it worse. Not sure but after a few more visits the drs pulled me aside and thought maybe she was doing it to herself. Now of course as a mom you can imagine what this might feel like? I wanted to punch the dr in his face. Our daughter is a very strong well put together young lady and even through this whole process she has been so brave and understanding and willing to take on any negative actions that may come of it. So at the time I didn't think this was the issue. Also because of the pattern it took falling out she would either need clippers to make this pattern or a ruler and scissors. The lines are to exact. You would think that if she was pulling it, it would be chunks here and there. Something I acknowledged that the dr agreed with thereafter and didn't think of at that time. However after about a week and no one getting any answers we put my daughter under a 48 hr video surveillance in the bathroom and her bedroom which she shares with her sister. She didn't know this was set up. Just to see if she was maybe pulling it out and we didn't want to be naive if there was an underlying issue we weren't aware of. But nothing. Actually the only thing we did see was her putting her homeopathic topical treatment and also taking her biotin pills. Gentle brushing as well. She is trying to save it not pull it out. At 70% hair loss on entire head.
Well on to endocrinology now as of dec. At 70% hair loss on entire head. Many of these appts leading up to this she has regrown minimal and now is almost at 85% loss. Going into the inital part of this appt I felt that this dr we saw was not specialized in hair loss by any means and almost didn't want to do any blood work on hormones etc. Until I pretty much demanded it be done or I wasn't leaving. She tested estrogen, thyroid, testosterone, and typical hormone relations in the blood along with cell count and deficiency.
After many months of excessive research that I have put in most if not all was leading up to either one of these two fields of drs. Today we got the blood results and other then a minor elevation in testosterone which she stated isn't anything alarming everything else came back negative or ok.
WHAT!!!! I was so sure that this was the answer we were waiting for. Falling to the floor crying to my mother on the phone I hit a brick wall. Felt as though our darling daughter once again has no answers and has to deal with this. Why myself as a parent cannot figure out what is wrong with her. Shes missing activities at school such as swim etc. I have decided to get a second opinion for endocrinology at this point cause I feel like she was a waste of time in the first place and didn't take her case to heart. With that being said I have also set up an appt with neurology. It almost seems as though her hair started from the outer hairlines and worked its way into the center of her scalp. Like a circle shrinking.
Most of the info that I have either obtained or found is by talking with people that have experienced or know someone who has and has given me leads into certain directions. Im begging anyone that can help me out on which route to maybe take or any info that can help her get to a resolution would be greatly appreciated. My heart breaks for her every day that she has to put on her wig to go to school. She should be enjoying a curling iron and make up at this age.
Thank you everyone and hopefully by posting this someone can shed some light on our situation.
ODD a gymnast for several years went for a haircut around her age of 10 1/2 when the stylist noticed a patch on the back towards her neck that was bald. We kept an eye on it for several weeks and noticed nothing major at that point. It started to grow back so nothing at this point alarmed us. Well then about 3 months later we noticed around the hairline underneath from ear to ear it started getting worse. Some areas bald and some with just a sprout or broken off. Now when I say this I want to make this clear. She wasnt losing it in random patches. This was happening in a linear pattern. About 3 inches deep from the neck again from ear to ear. Almost like she was wearing a sweat band and it rubbed that entire area off. Which is something she was doing so we took her to the dr's and while running basic blood work we told her to avoid wearing the bands at gymnastics. To no avail this was not the case and all her bloodwork came back normal. Sending us now onto dermatology. while waiting 2 months to get into them some hair grew in but then some on top in the bang area started to fall out. Again almost in a square and the same area continues to fall out and grow back. Dermatology did more blood work and also a biopsy. In the mean time waiting for those they started steroid injections and a topical minoxidil treatment. Neither one of these helped after 6 months of treatments. Actually I truly believe that either it just didn't work and the condition got worse or it specifically made it worse. Not sure but after a few more visits the drs pulled me aside and thought maybe she was doing it to herself. Now of course as a mom you can imagine what this might feel like? I wanted to punch the dr in his face. Our daughter is a very strong well put together young lady and even through this whole process she has been so brave and understanding and willing to take on any negative actions that may come of it. So at the time I didn't think this was the issue. Also because of the pattern it took falling out she would either need clippers to make this pattern or a ruler and scissors. The lines are to exact. You would think that if she was pulling it, it would be chunks here and there. Something I acknowledged that the dr agreed with thereafter and didn't think of at that time. However after about a week and no one getting any answers we put my daughter under a 48 hr video surveillance in the bathroom and her bedroom which she shares with her sister. She didn't know this was set up. Just to see if she was maybe pulling it out and we didn't want to be naive if there was an underlying issue we weren't aware of. But nothing. Actually the only thing we did see was her putting her homeopathic topical treatment and also taking her biotin pills. Gentle brushing as well. She is trying to save it not pull it out. At 70% hair loss on entire head.
Well on to endocrinology now as of dec. At 70% hair loss on entire head. Many of these appts leading up to this she has regrown minimal and now is almost at 85% loss. Going into the inital part of this appt I felt that this dr we saw was not specialized in hair loss by any means and almost didn't want to do any blood work on hormones etc. Until I pretty much demanded it be done or I wasn't leaving. She tested estrogen, thyroid, testosterone, and typical hormone relations in the blood along with cell count and deficiency.
After many months of excessive research that I have put in most if not all was leading up to either one of these two fields of drs. Today we got the blood results and other then a minor elevation in testosterone which she stated isn't anything alarming everything else came back negative or ok.
WHAT!!!! I was so sure that this was the answer we were waiting for. Falling to the floor crying to my mother on the phone I hit a brick wall. Felt as though our darling daughter once again has no answers and has to deal with this. Why myself as a parent cannot figure out what is wrong with her. Shes missing activities at school such as swim etc. I have decided to get a second opinion for endocrinology at this point cause I feel like she was a waste of time in the first place and didn't take her case to heart. With that being said I have also set up an appt with neurology. It almost seems as though her hair started from the outer hairlines and worked its way into the center of her scalp. Like a circle shrinking.
Most of the info that I have either obtained or found is by talking with people that have experienced or know someone who has and has given me leads into certain directions. Im begging anyone that can help me out on which route to maybe take or any info that can help her get to a resolution would be greatly appreciated. My heart breaks for her every day that she has to put on her wig to go to school. She should be enjoying a curling iron and make up at this age.
Thank you everyone and hopefully by posting this someone can shed some light on our situation.