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Things aren't going well...
Munchkin has now lost over 70% of her hair. She's not dealing well with it. She's coming to realize that she's probably going to be completely bald when it's all said and done, and is in the "it's not fair" stage. All I can say is, "no, it's not" and hug her. I have set up counseling for her, both to help her deal with this, and hopefully give her more tools to deal with all of her stress that I know is exacerbating the condition, if not triggering it to start with.
We see the dermatologist again on the 5th. I hope he can see what's going on. I'm still not convinced it's trichtotillomania, it just doesn't fit with the hair falling out the way it is. And I think any dermatologist who says AA doesn't start with a massive fallout is just off his rocker. (Please tell me if I'm wrong.) He's also saying that because she's got some odd "fuzz" in the bald areas, that it can't be AA, that if it was AA her head would be smooth as (his words) a baby's butt. I could swear I have read about some fuzz remaining for a while with a fallout at the start of AA. I'd be ok with that diagnosis, if it fit... but it doesn't. Last time she took a shower, we pulled out of the drain and her comb combined enough hair to make a small kitten. That's not trichto.
To add more insult to injury, both for my kiddo and me, my ex is telling me at every opportunity that I am causing her hair loss because after the bald spots started I switched shampoos from Nutrisse or something like it to an organic shampoo & conditioner that has chamomile and tea tree in it. (Our other daughter has dandruff, and neither girl is showing any kind of adverse reaction to the shampoo & conditioner switch.) It just so happens that the fallout was accelerating right about this time, but I've seen nothing to indicate it has anything to do with the shampoo & conditioner, and the dermatologist didn't even ASK if I'd changed hair products, so I don't think it's even an issue. He and his family are also telling her that AA isn't a "real" diagnosis, it's just medical jargon for "hair loss" and her aunt who apparently is having some male pattern hairloss herself has alopecia, too. They don't listen to anything she or I say, and are making this out like it's something I'm doing to her with my "hippy lifestyle".
Munchkin's starting to consider buzzing off what's left of her hair, since even if it started growing back now, it'd be months before she could stop wearing the wig, and the long hair would need cut back to the short anyway... but she's scared to do it because the dermatologist would see more uneven hair lengths and use it as more evidence she's pulling it out herself.
I know this isn't going to be easy, and life isn't fair, but I REALLY think my Munchkin's due a break. And maybe I am due one too.
We see the dermatologist again on the 5th. I hope he can see what's going on. I'm still not convinced it's trichtotillomania, it just doesn't fit with the hair falling out the way it is. And I think any dermatologist who says AA doesn't start with a massive fallout is just off his rocker. (Please tell me if I'm wrong.) He's also saying that because she's got some odd "fuzz" in the bald areas, that it can't be AA, that if it was AA her head would be smooth as (his words) a baby's butt. I could swear I have read about some fuzz remaining for a while with a fallout at the start of AA. I'd be ok with that diagnosis, if it fit... but it doesn't. Last time she took a shower, we pulled out of the drain and her comb combined enough hair to make a small kitten. That's not trichto.
To add more insult to injury, both for my kiddo and me, my ex is telling me at every opportunity that I am causing her hair loss because after the bald spots started I switched shampoos from Nutrisse or something like it to an organic shampoo & conditioner that has chamomile and tea tree in it. (Our other daughter has dandruff, and neither girl is showing any kind of adverse reaction to the shampoo & conditioner switch.) It just so happens that the fallout was accelerating right about this time, but I've seen nothing to indicate it has anything to do with the shampoo & conditioner, and the dermatologist didn't even ASK if I'd changed hair products, so I don't think it's even an issue. He and his family are also telling her that AA isn't a "real" diagnosis, it's just medical jargon for "hair loss" and her aunt who apparently is having some male pattern hairloss herself has alopecia, too. They don't listen to anything she or I say, and are making this out like it's something I'm doing to her with my "hippy lifestyle".
Munchkin's starting to consider buzzing off what's left of her hair, since even if it started growing back now, it'd be months before she could stop wearing the wig, and the long hair would need cut back to the short anyway... but she's scared to do it because the dermatologist would see more uneven hair lengths and use it as more evidence she's pulling it out herself.
I know this isn't going to be easy, and life isn't fair, but I REALLY think my Munchkin's due a break. And maybe I am due one too.
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Comment by Margie on October 21, 2008 at 5:32pm
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I can so fell you pain!! My 9 year old son lost about 75% of his hair in just 2 months. He has been diagnosised with aa. And yes, we had a little residual fuzz. I would suggest seeing if there is a different dermatologist anywhere in the area.
As for the shaving I just want to share with you our situation. Casey was very fortunate that he wears his hair longer and the top was the last to go. It was the best haircut because it covered almost all of the loss for a very long time. We however finally got to the point where not only could i not cover the spots but it was looking VERY bad. On Oct 9th he had picture day at school. We discussed it and decided that we would work things out through then and do the best cover-up job we could. After that we had resigned ourselves to the fact that the shaven look was going to need to be the next hip look for him (he REALLY didn't want to do this but agreed that it needed to be done). Anyway, the day after pictures I was putting on the steriod ointment we had been using in vain. Wow!!!!! There was regrowth!!!! And it was not white like I thought regrowth would be (well maybe a little fuzz was white but it picked up color in a matter of days). He now has TONS of dark regrowth with only a couple of spots where there is nothing. I'm so glad we didn't shave quite yet. Another day and we would have. His regrowth is about a 1/2 inch long in only the 1 1/2 weeks it's been. We do know that he may lose it again but are happy to know it's possible for it to come back (I had resigned myself to the fact that he must be going AT). Anyway, there are always possibilities.
As for your ex's opinion, you are his mother and we moms know!!! If he continues to share his opinion I would just let it go in one ear and out the other and do what you know is best for your kid ( and know the ex is a fool).
Anyway, I apologize if my opinion on your ex is overboard and rude :) My husband is very much into the denial and I have found I just need to move on and put his opinion to the side.
I hope all goes well for your daughter and I hope and pray she can see some quick regrowth that will last her lifetime.
P.S. Please find and new doctor ASAP :)
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Next time I will spell check before hitting the send button :)
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Comment by theantichick (Shannon's Mom) on October 21, 2008 at 6:15pm
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Margie - thanks for the support. And no, your comments about my ex are not out of line. He can be a real jerk, there are VERY good reasons I am NOT married to him anymore. I'm giving the dermatologist the visit on the 5th, and if he keeps up the idiocy this time, I'm going to another one. My pediatrician swears by this guy, but so far I'm not terribly impressed.
JeezLouise - Yeah, I've read so many cases that sound JUST like my kiddo's, and some like yours where the fallout happened even faster. Hers has taken about 3 months to get from 3 quarter sized patches to about 70% gone.
RoseMarie - Thanks for the reinforcement. I've been researching this since it started, and have been trying to give this same info to my ex but apparently if the info comes from me, it's not valid. I sent him links to some of the websites including NAAF today, maybe he'll listen to them. I cannot see how the shampoo has anything to do with it, especially since there's no sign of any allergic reaction, he thinks maybe something in the shampoo has shut down the follicles. I told him it doesn't work that way, but what do I know? I know that in many cases stress doesn't have anything to do with it, but we have auto-immune disorders all through my family and I have read a lot of information that says that stress can trigger and/or exacerbate any auto-immune condition. Munchkin is under a lot of stress, much of it caused by my ex who expects perfection from her and puts her in the cross-fire of a lot of his issues with me and other people... so I do believe that stress is a factor in her case... certainly not the whole problem with our genetics, but probably not helping at all.
I'm letting her make all the decisions regarding what she does with her hair, whether she wears a wig, scarf, cuts it or not... she's 11 and in 6th grade, so appearance is really a huge thing and she can make those decisions and it gives her some control over what's going on. :-) I just make suggestions.
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Comment by Ken on October 21, 2008 at 11:17pm
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I have nothing substantive to offer other than my true empathy and support for you both.
Love & light...
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Comment by Debbie on October 22, 2008 at 8:03am
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I'm very sorry for what you're going through, but I, too, would find another derm. I went to one of the best (so they say) in NYC after abut a year of bald patches. His answer to me was, "If you haven't lost it all yet, then you never will." A year and a few months later it was all gone. Then a year and a half after that it turned into AU. So even the doctors don't have any answers. It falls out differnently for everyone. We need to educate the world so they don't look at us and think we are sick.
When I was in high school there was a girl on the bus that started going bald. I, of course, thought she was sick and didn't know about AA. Fifteen years later I found out from a friend it was AA.
So if you're not comfortable with your doctor, find a new one, and don't listen to what your ex has to say because he doesn't know.
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Comment by Alison on October 22, 2008 at 6:47pm
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my demotologist said, ur bald, live with it. then i shaved my head and was depressed for about 4 yrs.
when my dr did an anti ANA test (blood test) it came up with my alopecia being caused by my immune system. get that test! it will shut the dad up about shampoo (my dad said the same) and could help with deciding on treatment.
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