Alopecia World
www.alopeciaworld.com
Advice for a mom
Hi All
This is my first post and I hope that someone may be able to give me some general advice. Here is the background to what is happening:
My daughter, Jess, is 12 years old and got her first patch about 18 months ago. She had a bit of a cold one week and then a couple of weeks later she got her first period and then about 2 weeks later I was washing her hair and noticed a spot of about 2.5 cm in diameter. This then grew to about 5cm.
I took her to a dermatologist who put prescribed Elecon (a steriod liquic? to rub into the patch). Six months later the hair was back. Last November there was a new bigger patch in a different location and I took her to a different dermatologist who took a skin scrapping and diagnosed her with a fungal infection. The new dermatologist prescribed a 2 month course of anti fungal tablets. The patches were much slower to recover this time but eventually they did start to get some growth.
In February I noticed a couple of new patches and again took her to the dermatologist this time the doctor did another skin scrapping but it came back negative for a fungal infection and the doctor simply told me (via email) that there is nothing that can be done she has Alopecia.
I have a few questions which might seem silly but I am really struggling to find any kind of guidance..
Jess is lucky enough to have fairly long hair that currently covers the spots she does have, However her hair is really thick and heavy, is it better to cut it into a bob to "lighten the load" ? Does it make a difference?
Does it make a difference if you wash your hair once a week or 4 times a week?
Are there any shampoos/conditioners that she should absolutely avoid?
I know that these questions really might not be even relevant to Alopecia but I am just lost... there is so little information in South Africa and I just dont know where to turn?
Thank you for taking the time to read this and any guidance would be appreciated.
Regards
Nicky
Replies to This Discussion
-
Permalink Reply by Dominique Cleopatra on
-
Don't cut it! It won't make it fall out to leave it long and it will help cover the spots. I wouldn't worry about shampoos or conditioners or how often you wash it. Try to keep her stress level low, feed her good food and let her get outside for some fresh air and sun. Encourage her to do fun things and to try to forget about her hair, and hope for the best. Most people with alopecia never get more than a few spots here and there that eventually grow back.
-
-
Make sure she takes a good multivitamin, iron, vitamin D, and biotin.
-
-
Hey, CT Mom, I saw your message in chat, but I wasn't able to respond from my phone. You're welcome : )I hope I could be of some help!
-
Permalink Reply by doodler on
-
Her hair is growing back and that's a good sign. Hopefully she will only have spotty alopecia from time to time. This is really an immune system problem although dermatologists will give you cortisone injections when necessary. There is no need to cut your hair (it doesn't cause any further problems and helps in hiding spots), wash as much as usual, it doesn't harm or help. I have never seen an endocrinologist, though it would probably be helpful (along with her dermatologist). There is a product called 'Dermmatch' that I use to color my scalp, so that small spots are not noticable (it is available at Walmart).
There are all kinds of factors in alopecia, the main one being genetic -- which means there is not that much you can do about it. Stress can be a factor (going through changes and whatnot), but we all feel stress and usually that's life -- you can't necessarily stop that. Other infections don't help either (such as dental infections -- I have found this to be a trigger for my spots). Anything that further taxes the immune system will probably not be great -- so keep her healthy -- vitamins, pro-biotics, exercise, etcetera. And if you can keep her as stress-free as possible, that's great but don't get crazy with that -- it's a circular problem, obviously. The more hair falls out, the more stress and there's nothing you can do about that.
There's reason for hope today with immune suppressants like Xeljanz and also this great stem-cell retraining that is going on in China. Google stem cell and alopecia and you'll see the study. Hopefully this treatment comes out quickly for your daughter. Best wishes to her and to you. I hope her spots fill in quickly.
-
Permalink Reply by Debra (twin mom) on
-
I wouldn't cut it. She at least has thever ability to hide the spots....if she prefers. Shampoos and conditioners and the amount of times you wash won't make a dideference as the behavior of alopecia won't be triggered by any of these :)
-
-
Unfortunately for a lot of people none of those things necessarily make a difference just because the alopecia comes from inside by autoimmune function. I know that can be discouraging to hear, but don't give up. Each person is different and you should absolutely try anything you think may help. There are shampoos and conditioners out there for people with hair loss or hair thinning that help maintain the scalp. You can usually find them in salons or online. Obviously if there are products she is sensitive to that may cause an allergic reaction, those should be avoided. Cutting hair is a personal choice and won't help or hurt the alopecia, but if she can get a haircut that hides the spots, either as is or with styling a certain way, it might make her feel somewhat better about it, I know that worked for me in the earlier stages. Hair washing doesn't matter, but gently massaging the head (without causing more hair to fall) can help because it directs more blood to the scalp (and feels really good). Otherwise get her tested for nutrient deficiencies like anemia or vitamin B, and have her eat healthy and get some exercise in, which lowers stress that also may contribute. Best wishes to you and your daughter.
-
-
Nicky, make an appointment to see Prof Nonhlanhla Khumalo at Groote Schuur out patients, one of the best dermatologists. Google her. I flew from Durban and now from NW Province. Between her and Dr Ilsphi Brown in Green point, after 5 miserable years of being pushed around by so many medical practitioners and specialists at great expense and treated like an hysteric I was diagnosed scarring alopecia. That was a relief just to be told i wasn't imagining things. Seeing endocrinologist soon to ensure no other concerns then taking the remainder of hair off and will face life with henna crowns. Good luck for you kleintjie.
-
-
Thank you all so much for responding. I know this is not happening to me but to my daughter but to be honest I am probably struggling more with this than she is. As a parent you are meant to help your kids and I just feel lost. There is very little info or support in South Africa (Gill I will definitely contact the prof you mentioned).
I think what scares me is, is there something else ? An undrelying cause? I have chronic urticaria and early symptoms of rheumatoid arthritis, which are both immune system issues. I also have one brother with multiple sclerosis.
I will see if I can find an endocrinologist in cape town to take my daughter to.
Jess has the most gorgeous red auburn hair..I often get asked if I have dyed it...the first thing most people say to her is they want her hair. Would any of you suggest counselling to help her cope? Or is it better to let her come to terms with it on her own. A classmate noticed one of her bald spots this week and she came home in tears. All I could do was hug her.
Once again thank you for taking the time to read and respond. Really appreciate the guidance.
Nicky
-
-
Hi again! To give you some peace of mind, I am 99.9% sure there is not an underlying cause because alopecia is it's own thing. Although I can't say for sure she doesn't have another condition, because I am not a doctor, it may be possible she has another autoimmune condition because when you have one auto disease it is common to have another. It's a good idea to take her to an endocrinologist to get tested for anything that concerns you. However, the alopecia itself is not a symptom and is harmless to physical health.
Emotionally though, it is frustrating, depressing and hard to watch. She may be anxious and feel the need to socially isolate herself, create a poor self-image and have low confidence. I know that all sounds really bad, but yes, counseling is a great idea and there is no harm in having a professional give advice and be a safe person to whom she can let it all out. This is a suggestion and ultimately she will come to terms with it whether she chooses counseling or not. I am not going to lie, this will be a tough road, especially hitting teenage years, but you sound like you are doing all the right things and I promise that with time (and maybe some professional help) she will come out on top of this condition no matter what happens. You're both going to be ok. Best wishes :)
-
-
Keep in mind that most people who get one or two alopecia spots, here and there, never lose much more hair than that, and typically experience complete regrowth within a year or so. I think, because most people on here are the rare exceptions, who are the minority of alopecians suffering with the most extreme cases of Alopecia, it perpetuates the false perception that most people with alopecia invariably progress to total hair loss, which couldn't be further from the truth!
© 2024 Created by Alopecia World.
Powered by
