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Permalink Reply by Rodeli on August 26, 2011 at 11:45pm

Hi Allison, I'm sure it is very difficult to know exactly what to do for your child. When a child has alopecia, I think it is much harder on the parents than the kids--especially for such little ones. I lost my hair when I was just a tad bit older than your son and honestly, I don't remember that much from that age. But my earliest memories, which weren't long after that included some very uncomfortable treatments and some not so uncomfortable treatments. Some of the creams didn't bother me too much but some irritated my scalp a lot. The injections were the worse! I use to run out of the doctor's office and lock myself in the car to avoid the needles when I was on the younger side. I hated them! To this day, I cannot do needles without feeling a little sick to my stomach. Please do not subject your child to those unless your child really wants to try that kind of treatment when he is older. I can tell you from personal experience that my parents took me to many specialist and tried just about any treatment that was available. In the end, the alopecia won out and I had AT (AU on and off through out my life), but I could not take the treatments any more. They were giving me a false sense of hope (there is no cure) and my parents spent a lot of money, time, and energy for naught. At 14, after another round of injections in my scalp that had me vomiting my guts out and feeling horribly sick, I told my parents it was enough. I got it that they loved me and wanted to do their best but we all just needed to accept my hair was most likely not going to grow back and move on. That may be hard to hear as a mom, but that is how I felt as the child with alopecia. Your son is still very, very young. At this age he probably doesn't realize what is happening to him or even care--I didn't. I was a very happy, well-adjusted little bald girl. My parents tried to get me to wear wigs when I was very little but they said I kept taking them off. I didn't want to wear them. Plus on kids that little back in my day, they didn't make child-like looking wigs--they looked like terrible old lady wigs--at least that was my opinion as a little girl and still is when I look at old photos! They only pushed the wig issue more when I went to school. But that is another story for another time. Some of the treatments are maybe a little different today--maybe not, but the reality is that there is no cure--sometimes temporary fixes, but no cures. I think the best thing you can do for your son is to let him be for now and depending on how much hairloss he has later and how it feels about it, getting him support and helping him with acceptance. I can tell you that love and acceptance that I got from a few people growing up was what got me through my alopecia growing up, not the medications. But that is just my experience and thoughts. You should do what you think is best for your son. Just be aware that he may feel differently than you do as he gets older. I did. I know a couple of young girls in my county who have accepted and embraced their baldness and go wig free and their parents, family, and friends support them and love them unconditionally and both seem to be really well adjusted, happy young girls who are very active in sports, the community, their church, etc. If you do decide to do the treatment, I would suggest waiting until he is older, can better understand what is happening to him, understands the medications better, and can have a say in it. For now, let him just feel and believe he is perfect the way he is because he is. :-) Hope that helps.

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Permalink Reply by Karen Smith on September 1, 2011 at 8:56am

It is so difficult to know what to do in this case because there are no cures. Some of the treatments help some of the time, so weigh the side effects. Monitor him carefully and see if he is having side effects if you use them.

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Permalink Reply by melkat09 on May 15, 2013 at 1:34am

I have not dealt with those specific meds, but I do know that while topical steroids can help, they can have dangerous side effects in certain ppl. My son was diagnosed with AA at 2 yrs old and was put on a regiment of Betamethasone for his hair and Desonide cream for his eyebrows. A few months later, he began losing weight. We went to several specialists over 17 months to find out that the Betamethasone shut down his adrenal gland! Apparently, steroids have an artificial cortisol...this is a hormone our bodies naturally produce to aid in normal body functions and growth. This false cortisol in a drug can make the body "think" that it has enough...so it stops making any. By the time we found out, his body was not producing enough on it's own to function! We had to wean him off of the steroid and supplement his cortisol levels (with oral hydrocortisone) until his body realized it was not making enough and kicked back in...all the while carrying around an emergency injection in case he went into what they call an adrenal crisis. We recieved the go ahead to continue the Desonide, as it is weaker and is put over a much smaller area...but the Betamethsone is gone! We just got results back from a test that confirms that,after a long process, his levels are normal again. Now, this is a very rare side effect, but it is worth discussing with your drs. If you decide to go ahead and try the meds, just keep an eye on his weight and eating habits.

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