Alopecia Areta

[BeNoisyBee]

My 16 Yr old DS has been diagnosed with alopecia areta, started last year around June, 4 small bald patches. These were starting to grow back in then at christmas he developed another 4 small patches, one of these definitely has signs of growth. I'm pretty confident they will grow back in after a few months. Again today he has quite obvious hair loss, we a bracing ourselves for new patches in the coming days. I'm thinking the cause is exam stress and matters of the (teenage) heart! I'm looking for some positive stories to give us hope, it is such an unpredictable and frustrating condition, just when he thinks there is regrowth, more patches appear. It is giving me great anxiety, everytime I look at him I'm fearful for more bald patches. At the moment we have managed to keep his afro hair longish (which he hates) and cover it up, but it's getting more and more difficult to do. Waiting on a prescription for a special shampoo and steroid cream to put on the patches to promote growth. Just wondering if anyone has any similar experiences, when will the patches stop appearing? Or an idea of the typical cycle of loss and regrowth. On the positive side, he definitely experience regrowth after several months. I'm physically sick with worry when I see his hair falling out, struggling with the lack of control of not knowing how it will pan out.

Sorry to hear about your DS - my DD has relapsing and remitting AA. You can ask for a dermatology referral and get steroid injections - the are repeated weekly for a short course and worked for my DD. Not too painful more like pin pricks. She has autoimmune AA - has your DS got any other autoimmune conditions as they go hand in hand?

Once treated you have open access back to dermatology via self referral in the event of another flare up. It's done the trick for DD so far with no recurrence for several years now.

@mustbemad71
We've had a referral to dermatology all done online, they have prescribed some steroid cream and medicated foam shampoo which I need to collect from the pharmacy and start using. Bloods came back with a few things out of range but dr doesn't seem to think they are anything to worry about. I think because the hair does appear to grow back a few months later they are taking the watch and wait approach. Its just the uncertainty when he wakes up not knowing how many new patches will have formed. I think it's linked to exam pressure, he has no auto immune condition that I know of. It is just hard to see you otherwise healthy boy becoming so upset and anxious all the time over something that he (and I) can't control.

OP sorry to hear about your DS and @mustbemad71 thank you for filling me with some positivity for my DS from your DD's experience. Out of interest, when was she diagnosed? My DS is 2yrs old and has been diagnosed with AA. He has quite a large area of hair missing at the back of his head. No known cause. We thought it was caused by birth trauma (due to vontouse) but the dermatologist has dismissed this as there would be a lot of children with this, if this was the case. We are two months into steroid cream to encourage follicle growth. Unfortunately it does not seem to be working for him. I would be really interested to know if you come across any treatments which stop the process happening OP. And how both of your children get on. I must admit I know he's only a baby but I'm nervous for him starting school and I'd like answers or something to help him.

I have it, it started in my final year of university and I lost several huge patches of hair over the course of several months. For me, the first time was the worst time. Complete regrowth took a couple of years but then it went into remission for several years. it comes and goes now, usually 1-2 patches up to 2p in size, following a period of high stress. I also have eczema / hay fever / asthma, they all go hand in hand… I was advised topical treatments and injections are very unlikely to work, so I didn’t bother with them. Not sure if that’s changed in the years since I was diagnosed though. Please try not to worry too much, in all likelihood, the patches will grow back and all will be well. I know that’s easier said than done though. Good luck to you and your DS.

Hi, my DS had AA. Started with a 5p-sized patch and within 3 months was about 10cm in diameter. Slowly grew back and about 7 months after it started was completely gone. He hasn't had it again (this was 4 years ago) but autoimmune conditions run in the family.

Sorry to hear about everyone's DC and your AA AutoImmune2. We were told that the injections were worth a try as they act to calm the immune system which is essentially in overdrive - attacking the healthy hair follicles.

My DD also has an under active thyroid and other autoimmune diseases "on the march" where blood tests show that she tests strongly positive for the autoimmune aintibidies for these conditions. OP in your shoes I'd push for the injections as they did seem to work on several occasions for my DD although I admit that the hair may have just grown back anyway. You could also ask for a referral to an endocrinologist to check all his autoimmune antibodies. I hope his patches start to regrow very soon.

Hi, I'm sorry about your son's diagnosis! I got alopeacia areata first when I was 14. By the age of 15, I was completely bald, including losing eyebrows,eyelashas and all other hairs on my body. We tried everything you can think of, steroid injections are only effective while you are getting them...I wore a wig until I was about 24 when it started to grow back. Since then I had several remissions and flare ups but my hair never fully fell out like when I was 15. I am 36 now. New growth happened for me when some major changes happened in my life. I also experimented with autoimmune paleo diet which was not conclusive for me but I do know it works for some! It's really hard though! I'm sorry I cannot give you any better news,but I just want to prepare what may come... I have heard of people who had full permanent regrowth though. I genuinely hope this will be the case with your son!! xxx

@Fueledbycoffeealways hi, just wondering how your son's hair is now? We think our dd has alopecia

I'm so sorry you are all going through this. Wanted to give some personal experience. I had aa as a teen. Similar cycles. Once I got through school and puberty started to slow and come to an end, my hair grew back and it never happened again. Docs couldn't give me any reason why, but puberty is a strange time.
I'm late 30s now and constantly worried about my kids developing it too.

Hope you have good outcomes.

His hair loss stopped summer last year and has now fully regrown. No new loss yet. It was about 18 months from start to finish. We are fully prepared for it to happen again at some point in his life hopefully later rather than sooner. He's taking his vitamins and eating well, trying to keep his stress levels down and just hoping for the best. I'm hoping that if it happens again it will be a few patches and grown in quick. I've done loads of research and for some it seems to be a one off and maybe a small patch decades down the road for others a complete loss and no regrowth. I think knowing that it has grown back this time gives us hope it will again if he was to lose again. I think I've struggled with it more than him. Just keep looking at his hair all the time, wondering if he is losing it or not!

Thank you for everyone's comments and experiences, they really have been helpful for me managing my son's aa.

@rainbow616 as he's grown and started pre school the area has reduced slightly. I think it will keep reducing as his head grows. It's still very much like scar tissue, no follicles. We haven't heard back from dermatology after the steroid cream treatment. We've decided to leave it for now and assess later. To someone who didn't know him, they couldn't automatically spot it as it can be hidden by the supporting hair. I'm hoping it will reduce again and still hoping that the follicles grow. I do try and massage his scalp to encourage growth. We've also since this have been referred to hospital for a cerebral palsy review, due to him walking one side on tiptoes. So I'm now wondering if it's all linked. How old is your DD?

@Fueledbycoffeealways thanks for your reply. It's so worrying isn't it 😩 my little girl is 2 x

@VivienneDelacroix how is your ds now?