Hi Kayla, I am 46 years old & have had this condition since I was five. I have had burning solutions on my head 18 years ago & was told by the experimental dermatologist it was a decoy for the immune system to create a diversion so the immune response can leave the hair follicle alone. It does not work long term. I don't know of this kwan oil yet can't remember what was applied to my scalp. I only remember the burning pain. I have tried a lot of things in my life time. Maria
I like the way you put it.. 'balance hope with growing acceptance'.. tough job balancing these emotions. lets stay hopeful though!
update me if you see any improvement with these treatments :)
Our daughter started losing her hair last June right before a Cancun trip. A week or two later, the initial balding on one side of her quickly expanded. As parents, it was incredibly hard to see as many of you know. She was only 7 at the time, so she was sad but not distraught. We quickly visited Stanford Hospital and UCSF (two top hospitals in California Bay Area), and all doctors conducted a barrage a tests and diagnosed her with auto-immune disorder - likely AT and AU given the rapid expansion. Within 2 weeks of discovery, she was down to 50% hair loss, and 90% around 6 week timeframe with eyebrow loss on one side. This happened after we diligently applied the topical steroid treatments that were prescribed. Grandparents conducted their own research, and recommended that we try traditional Chinese medicine (TCM). Through their China university network, they learned that these symptoms existed for hundreds, if not thousands of years in Chinese history and have been researched extensively at TCM universities and practiced by TCM doctors for much longer.
We pretty much had given up much hope at that point and had already ordered custom wigs and other head dresses in preparation for summer and next school year. Parents flew into town and randomly approached random Chinese elders on street in SF Chinatown to get recommendations on best TCM doctor in town. We took our daughter in to get evaluated and the doctor told us not to worry because he can help. We have always been skeptical of TCM, despite grandparents who swear by it, and relied on western medicine. In TCM, they explain the hairloss as a symptom of liver/kidney dysfunction and/or blood circulation issue and not as an auto-immune disease. It treats the "source" vs. steroids that address the "symptom." TCM supports often explain that treating symptoms isn't enough once you stop taking the medicine, so make sure doctors diagnose and treat the sources. Sounded like a bit of a far fetched snake oil story to us at that time.
Long story short, we stopped the steroids and biotin shampoo treatments last July/August, and changed to the herbal tea concoction that we had to brew daily. It tasted pretty bad so daughter toughed it out. We also got a little hammer prick (same as the reply above) to tap her bald spots, and rubbed fresh ginger slices daily. We continued to apply ginger juice until she got all her hair back (FYI). Within a week, her hair stopped falling, and a week or two after, we saw hair growth on top and back. Within 2 months, we saw hair growth 50% around head, except frontal sides. My parents continued to communicate with their network in China and made a trip there to one of the most respected TCM hospitals and spoke to a specialist there. They brought pictures of our daughter before and after hairloss. Normally the doctors won't treat based off of pictures, but he took interest in my parents commitment and daughter's story and prescribed a few treatments: (1) two different herbal pills to take in morning and night. (2) a glass vial of herbal extract (3) 1 topical steroid. He mentioned that daughters skin was not healthy looking and hair color was too light, which are signs of liver/kidney weakness and blood circulation. The doctor recommended we stop the other TCM treatment after reviewing the herbal recipe, since it was a bit too strong for a 7 year old. We were surprised that the steroid was included but apparently the combination of all was found to work. And it did. Within a week (this was around Thanksgiving), the growth expanded further to 90% and her skin tone improved and hair turned really dark brown. I was already darker with the initial treatment, but now her hair color almost black. She still was missing small patches on left and right side in front. We had already booked a trip to Beijing (Feb) to meet doctor a few months after starting this treatment. Once we saw him, he only made a small tweak - take one of the herbal pills 2x a day instead of 1x. Literally a week later, the remaining bald spots disappeared.
I don't know if we were just lucky that it was a recoverable event, or if it's because our daughter went on the treatment before she had loss her hair for a long duration, but we are super thankful that her hair has continued to grow for past 5 months without new signs of loss. 2 months later (April 2016), we decided to stop taking any of the herbal medicine and keep a month supply on reserve. It's been about 2 months now and her hair continues to grow longer. Initially we thought it was luck or chance based off of an external factor to our daughters diet or life experiences. However, we definitely saw increased hair growth with each TCM treatment so we are believers now. The doctor prescribed wife a tea to help with her cramps and that actually worked too for 4 months after just a week of teas. We continue to want to stay involved in our local Alopecia community as the friendships and support we received has really meant alot to us. We will continue paying it forward.
Interestingly enough, this experience has helped us grow so much more as individuals and as a family.
Thank you ever so much for sharing your story.
My 10 year son has been diagnosed with Alopecia and we he is currently receiving acupuncture and TCM in Melbourne Australia. I would love to know your contacts in Beijing and if you don't mind sharing what the ingredients are in the treatment that your daughter has been receiving so that I can chat to our TCM consultant.
Your story is very encouraging and although we have a wonderful Alopecia support network the treatment options when it comes to 'non western' treatments can be very isolating.
With many thanks
PS I have sent you a DM with my email address.
Many thanks for your speedy reply.