Alopecia areata

[BeNoisyBee]

My DS has been suffering with Alopecia Areata for coming up to a year now. He seems to be in a cycle of hair loss then regrowth. Just when hair starts to grow in one patch, more appear. He is going through his GCSE, wondering if that is the cause? He has steroid cream to put on the patches to promote growth. Wondering if anyone else out there has experience of this cycle and how long it took to settle down? He is becoming really distressed when he showers and loads of hair comes out, bracing for a new bald patches to form. I'm feeling really frustrated for him, looking for some positive and hopeful outcomes from people that have experienced similar. I have read lots of posts where people have bald patches which re-grow over time but I can't seem to find out much about cycles of hair loss. Hopeful we just need to ride out the exams and all will be well. Fingers crossed!

I went through something similar when I was at secondary school. I believe it is stress related. I was prescribed regaine by the doctor (back when it was fairly new and only available on prescription). My hair did grow back. Not sure if the regaine actually helped or whether it would have regrown anyway to be honest.

It can be immunity related too. A real doctor would have known and test his immunity. A real doctor would have known after 4 years of pandemic: NIH: ''In addition, COVID-19 impacts various alopecia-related diseases, including androgenetic alopecia, arieata, and effluvium, because the virus disrupts stress and physiological factors '' Did they look into this? i wonder if anything that boost immunity might help https://www.aad.org/public/diseases/hair-loss/causes/covid-19#:~:text=Most%20people%20see%20noticeable%20hair,nine%20months%20before%20it%20stops. & https://www.iomcworld.org/open-access/alopecia-areata-in-children-after-covid19-infection-97974.html

Hi. He is going through GCSE now, but has this problem for almost a year now, so it has nothing to do with it. I see how often it can follow an infection, meaning it can be linked to low immunity. https://healthcare.utah.edu/healthfeed/2022/03/losing-your-hair-after-covid-19-there-good-news '' "A lot of times, we know these patients are going to recover spontaneously and on their own," he says'', '' His hair loss gradually diminished, and the hair volume recovered to almost the pre-infection level at seven months after the first diagnosis of COVID-19''- if for any reason this started to happen after a 'viral infection', which should have been the 1st line of inquiry during a pandemic caused by a virus known for its ability to damage immunity

Out of interest how long did it last for you? Just when we think the hair loss is stopping it seems to ramp up again.

Hi, so sorry you are also going through this with your son. Our alopecia journey has just started when about a week and a half ago I noticed a 10 size patch of hair loss at the back of my son’s head. We panicked and didn’t know what to think. I booked an appointment with the GP who confirmed it as alopecia arrays and said it will probably get worse. Fast forward to now and the patch has grown-not dramatically but it has and there are also a couple of very small spots around his scalp. I am trying so hard to keep it together for him, he is blissfully unaware that I’m not sleeping, or eating and feeling sick all of the time. We feel we have gotten nowhere with the GP, told to return after 3 month. We’ve booked a private appointment with a trichologist in the hope of some answers. Just to finish off he had some bloods taken a few weeks ago for immunology as he had a really bad bout of one very high temps over the winter missed a lot of school etc. but his bloods are all perfectly normal and they have tested him for literally every auto immune thing going and iron, vit d etc. can anyone spread some reassurance? That this nightmare gets better. I’m terrified he will lose it all especially at this age, going into comp in sept. X

I feel your pain, I've really struggled with it all, feeling very anxious and sick with worry bout how it will all pan out, he seems to handle it much better than me. It does appear to be a very unpredictable condition. It sounds likely though in your sons case it is because of the illness he had, it can take a few months for the hair to fall out from a temp. I asked for a referral to dermatology that have given him a treatment plan, not that it appears to be stopping the loss, but it might make it grow back quicker? My DS has very obvious hair loss but not one person at his school in nearly a year has even noticed, he's grown his hair a bit longer and I use camouflage spray to fill in the gaps. (I started with a sharpie pen that worked just as well!) I'm not coping very well with it at all so I will spare you the 'don't worry speech' but in all likelihood it will all grow back and be a distant memory.

I would really love that to happen, for it to just disappear and like you said become a distant memory. Did your son have bloods taken? Yes we’ve bought some hair fibre which helps a bit…..for me the worst worries are the thoughts in my head of not knowing what the future holds…..and the fact no one has answers or quick solutions really. X

Yes, he had bloods taken twice now to see if there's a trend of anything but all seems OK, he takes multi vitamins as a couple of nutrients were borderline, he's been on these for more than 6 months and hasn't made a difference though. I know exactly what you mean about the uncertainty of it for the future, and there's no quick fix which is very frustrating to say the least. From talking it through with different doctors the general view is just to ride it out, although it seems dismissive to me, they see more cases of this than you think and the majority have positive outcomes.

@BeNoisyBee it lasted about 6 months I think. I had two completely bald patches. One on top of my head about the size of a 50p which I hid by changing my parting and a large section of the bottom (so above the back of my neck) which was harder to hide if I had to tie my hair back. Both areas just started to grow thin white hairs then eventually thicker brown hair grew. Touch wood I haven't had it again 25 years on.

@emerald1981 that’s reassuring, it’s bloody awful, causes so much stress😩 (luckily not for my DS so much as I’m trying so hard to keep it light for him). I really just want the whole nightmare to end. X

I am sorry you are going through this without any help from your GP. Can I please ask what immunology tests they did? When I hear they did all the tests possible, knowing how nothing changed since the start of the pandemic to take into account the enormous burden caused by covid, these words mean nothing to me, unless I know exactly what they tested for. Do you know the names of the tests? The word immunology can mean tests for viruses & bacteria. Immunity tests are to check if he has a low/damaged immunity. Also called immune deficiency tests. I believe that just due to the fact they didn't even explain this essential difference, they didn't test his immunity, but checked him for bacteria. For some reason I noticed when a child in my family was ill, they all refused to test him for viruses, despite the symptoms suggesting viral infection. They only tested for bacterial infection, test was negative (of course, because he had a virus), then treated him for bacterial infection, completely ignoring the fact that it can be viral. So: 1. What exactly did they check: bacterial or viral infection - these are immunology tests. or 2. immunity tests ( or primary immunodeficiency) to actually see if he has low immunity, which can cause alopecia. Immunodeficiency tests I assume were important for children suffering from alopecia and would be one of the first investigations to start with https://www.mayoclinic.org/diseases-conditions/primary-immunodeficiency/diagnosis-treatment/drc-20376910

Wondering how many cases they have seen since the start of the pandemic and why are they so ready to normalize everything? ''Alopecia areata may be a dermatologic manifestation of COVID-19, with cases most often appearing 1 to 2 months following infection''https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8828419/ Did they bother to inform you as a very worried parent? https://mcpress.mayoclinic.org/living-well/what-is-alopecia-areata/#:~:text=In%20people%20with%20this%20condition,and%20in%20the%20genital%20area. Their solution of waiting for 3 months while doing nothing - what exactly is its purpose, to give you the feeling they monitor it, but actually they do nothing about it? What did they say caused an autoimmune disease suddenly? Is it inherited? If not, what caused it, I assume any real doctor would ask these questions....I hope they did care enough to inform you: https://kidshealth.org/en/parents/alopecia.html#:~:text=It's%20an%20autoimmune%20disorder.,inflammation%20that%20disrupts%20hair%20growth. Did they refer you to a dermatologist? ''The triggering of autoimmune conditions by viral infections has been of interest to the scientific community for decades. '' - did the GP bother to find out what suddenly caused an autoimmune disease in a child? https://www.nature.com/articles/s41584-023-00964-y

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6421792/#:~:text=Recently%2C%20increasing%20evidences%20have%20shown,diabetes%20%5B1%E2%80%933%5D. Did they test for inflammation markers? '' Recently, increasing evidences have shown that the abnormal inflammatory response is closely associated with many chronic diseases, especially in autoimmune diseases''. If inflammatory markers play a role, then I assume reducing them might help. ''T cell-mediated inflammatory responses have long been recognized to play an essential role in the development of autoimmune diseases, including Th1, Th2, and Th17 cell responses. Recent compelling evidence has shown that abnormal T cell immune response, including Th1, Th2, and Th17 cell responses, was actually having a crucial role in the inflammation of autoimmune diseases''

@Sanddancer84 hi how are you getting on? I found a small patch on my 5 soon to be 6 year old a few days. I've taken him to my dermatologist (as I have had episodes in the past of AA) and they think it's also that. His is currently only small and not noticeable. I'm really hoping that it just grows in and it's a one off, I'm not sure if I am being naive thinking that x

@Sanddancer84 fingers crossed for you. From all my research I've done and people I've spoken to, it seems to be that for some it's just one or two patches that are filled back in within a few month max a year. For my DS it appears to be a persistent cycle of more patches forming while older ones grow in. I'm holding onto the positive that they do appear to grow in after several months, but just wish new ones didn't form. Having said that he hasn't had any significant patchy loss in a while just diffuse shedding that is more than usual. Steroid cream has actually worked well for him and shortens the time it takes to grow in, he has new growth in patches after 6 weeks instead of months. He has had his a year since we first noticed, GCSEs are in full swing, hoping it is that and it will all start to get better soon. He's desperate for a shorter haircut! It can be very unsettling I don't know why if affects me so much, he's otherwise healthy and worse things could happen, the lack of control, not knowing and there being no quick fix seems to cause me great anxiety.

How is everyone getting on now please?