I come to your group worried and in need of help! My oldest son was diagnosed with vitiligo a few months ago. He is 14 years old (15 this spring) and started high school this fall. I assume his story is similar to many of yours. I first noted the white area on his forehead about 6 months ago. We had just returned from our annual week at the beach and I noticed the white "area". My son tans very easily and has light brown hair and deep brown eyes. I am a melanoma survivor so I take sunscreen very seriously. It has always worried me that he tans despite wearing a strong sunblock but back to the story. He had been seeing our local dermatologist for about a year for his acne. As I said I first noticed the white "area" in late June but thought it was from the sun. I bought a strong sunblock for faces only and was adamant about him wearing it. I thought we were dealing with a discoloration from a light sunburn. Over last summer I asked his local dermatologist about the white spot and he brushed it off and agreed with keeping sunblock on it. Then finally at an acne check up in September he mentioned he thought he may have vitiligo and he would need to confirm the diagnosis by using a special uv light. He stressed that speedy treatment was needed but wouldn't do a thing until my sons insurance authorization was amended for him to treat him for vitiligo. I jumped through hoops to have the authorization amended and took my son back to the dermatologist. All he did was write a prescription for him (Protopic 0.1%)and said stress makes it worse. No "light" no information nothing. Well I went home and started researching and honestly scared the crud out of myself. I spoke to my son about his diagnosis. Being a 14 year old boy he didn't have much to say. He seems more concerned about his acne. I have taken my son back to this dermatologist for his follow ups and I know we need a new dermatologist. I am not an alarmist but I also don't agree with this dermatologist lackadaisical approach. I am working on an authorization for my son to see a new dermatologist. We live in eastern North Carolina. I plan on taking him to my dermatologist at ECU. If anyone is in this area or can refer me to a dermatologist I would be grateful! I have so many questions. The ointment prescription that my son is using has helped the main white area in his forehead. His current dermatologist told us it was suppose to help the pigment grow back. Last week at my sons check up I asked a lot of questions. I had read that it is important to keep the white areas protected from the sun. With baseball practice starting and living in the South and near the beach I was worried about the sun exposure. My sons main white areas are in his forehead and I have noticed a few spots have grown larger on his jaw line and above his lip. My son uses PanOxyl 10% for his acne face wash, a prescription pads, Aczone acne spot treatment and an oral antibiotic. I have asked his current dermatologist if any of these acne treatments can inflame the vitiligo but he responded they don't. From the pictures I have seen my sons case is relatively mild right now. It is noticeable though. Very noticeable. He won't allow his picture to be taken anymore. I think it can spread or get worse at any time. What do we need to know, what should we do or who should we see......as I said I know stress can aggravate his condition. He has experienced bullying at school from his acne and his vitiligo. My lord kids are beyond cruel. He has been seeing a counselor once a week to help him. He is a beautiful boy inside and out. He wears his heart on his sleeve and we thought by providing him with a third party to talk to who is experienced in working with adolescents it could help him learn tools that he needs now and in the future. In addition his 15 year old cousin was recently diagnosed with Stage IV non Hodgkin's lymphoma. The stress has been hard on our family. I am doing everything I can to protect and help my son. Sorry to run on and on. But any help is appreciated! Lastly, I recently recalled my son was treated for molluscum contagiosum. When he was 6 years old we had gone on a cruise. Afterwards he developed a horrible, horrible rash on his groin and personal area. He was repeatedly misdiagnosed until he accompanied me to the dermatologist who treats who my melanoma. He took one look at him and used a laser and took care of the problem. I have read that autoimmune disorders can cause vitiligo. I guess the molluscum contagiosum was a coincidence.
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your story made me cry...so sad for your son...but I think there is hope! I have had it for 30 years and last year my daughter (15) started with it on her face...I was mortified!
I have been treating mine through diet (vegan), supplements; vit B12, probiotics, Omega 3, Gingko Bilbao, protopic and sunlight or UVB....I have re-pigmented about 70%. For my daughter it was too difficult to get her to follow my dietary regime so I took a softer approach - reduced meat and dairy and increased vegetables, fruit, drinks of juiced veg, protopic and UVB plus daily 120mg Gingko Bilbao - it has disappeared and so far (fingers crossed) not come back.
the earlier you start treating the better, better diet may help his acne as well, daily moisturising with organic coconut oil is good and a strong belief that he can beat it.
good luck, will be thinking and sending positive thoughts for you both x
Andrey > Caroline HindleyFebruary 1, 2013 at 7:55am
Yeah Caroline !! Thats the way to go ! Add Tyrosine and B6 and i will eat my socks if it wont beat Viti ! And my soccer socks is one nasty dish if not cooked properly :D :D
I was diagnosed with Vit. when I was 9 years old. The steriods that were prescribed to me I didn't use them as I was suppose to, partly because I was so young and it was a battle with my mother every night to get me to sit still and put the creams on, so they didn't do much for me and after a couple of months my mother stopped forcing me to use them. I am now 24 and a couple of years ago I gave the steriods another try. My knees have re-pigmentated and so have my elbows and a couple of spots I had under my arms. My hands have not improved, I believe it is because that is where I've had vit the longest. Try rubbing the steriod creams into your sons spots in circular motions until the cream dissolves, that is the method my current dermatologist told me to use. Do it now that he has just been diagnosed. The longer you wait the less the chances are of it re pigmentating. Good Luck!
It doesnt matter big or small hospital they will tell you the same garbage - there is nothing we can do . Oh ok ok they might offer laser treatment but its expensive and if Viti is spreading then it useless , unless you are loaded with money .
Its all inside .
All those UVA , PUA light treatments are useless only mess up your appearance and hell knows what else . If these POO POO lights had any effect there would be no Vitiligo problem ...
I already posted whats the secret of Viti , and it can do no harm .
He should have blood tests and I take our daughter to a larger hospital My docotr called it a vitiligo panel and a auto immune panel. Thyroid disese is common with vitiligo. Also i have found a pediatric dermatologist is a good choice because they know all the options for kids.
It seems in my limited knowledge that my son should have blood test to check for an under lying autoimmune disorder......correct? If I am completely honest I think he had spots long before now. As I said he has a olive tone to his skin 9 months out of the year (wearing sunblock but outdoor activities and living in the South). He was diagnosed with chronic asthma and had a rough time of until about 2 years ago. Since then his asthma has become more reactive and not a constant condition. I am keeping notes of all of your comments and suggestions. I have never heard of the some of the things you have suggested. I have heard there are laser treatments and such. That is why I think I should take him to a larger hosptial ie a teaching hosptial such as ECU, Duke, UNC etc.? Do you all agree? I have noticed a discoloration of his hair along the hair line and his eyes brows. They have some gray hairs. I stupidly thought it was due to the medications for his acne that take the color out of everything. He is a teenage boy in his freshman year of Highschool and I just want to learn as much as I can about this disease to help him. I haven't told our family because of my nieces cancer fight. I am scared.
My daughter has Vitiligo , she is 7 and has had it for 4 years, It is really extensive even causing gray hair. Last month she was diagnosed with Celiacs which has been recently linked with vitiligo. I understand your concerns, personally I take my daughter to a childrens hospital and on her intial visit they ran a battery of blood tests which include tests for thyroid diabetes etc. Than anytime we have new sympotoms i.e. the gastro problems they run blood tests again. We tryed protopic and that did not work now we have moved on to Lidex. The options for treating children or more limited than those for treating adults because of the possible side affects of those treatments. It has been 4 years our family has been dealing with vitiligo. Personally I think my daughters spots are unique and beautiful, but I am aware that children are cruel. I hope your son starts to have an easier time and you find a cream that works.
Tony , you take all the good supplements ... but you forget the most importan one - amino acid Tyrosine . Oh and B6 of course, without B6 tyrosine is useless .
Hey Tifiny
Sorry to hear of your experience. Many of us know how you feel. I have had vit for less than 2 years now. I'm 43 going on 44. I have kids too, and my oldest is almost 14 as well. If he were to get vitiligo, it would break my heart. Mine showed up on my forehead too. I've had and am still having excimer laser treatments that have been working a little. I'm also using Protopic. I'm also taking a slew of vitamins - multi, D, C, coq10, alpha lipoic Acid, fish oil, B12. Keep doing what u can, and stay strong for him. I know how concerned you are, but I think it's best for him to see that his mom stays strong and confident through this ordeal, which could truly be a long road. Best wishes and God bless.
Replies
your story made me cry...so sad for your son...but I think there is hope! I have had it for 30 years and last year my daughter (15) started with it on her face...I was mortified!
I have been treating mine through diet (vegan), supplements; vit B12, probiotics, Omega 3, Gingko Bilbao, protopic and sunlight or UVB....I have re-pigmented about 70%. For my daughter it was too difficult to get her to follow my dietary regime so I took a softer approach - reduced meat and dairy and increased vegetables, fruit, drinks of juiced veg, protopic and UVB plus daily 120mg Gingko Bilbao - it has disappeared and so far (fingers crossed) not come back.
the earlier you start treating the better, better diet may help his acne as well, daily moisturising with organic coconut oil is good and a strong belief that he can beat it.
good luck, will be thinking and sending positive thoughts for you both x
Yeah Caroline !! Thats the way to go ! Add Tyrosine and B6 and i will eat my socks if it wont beat Viti ! And my soccer socks is one nasty dish if not cooked properly :D :D
I was diagnosed with Vit. when I was 9 years old. The steriods that were prescribed to me I didn't use them as I was suppose to, partly because I was so young and it was a battle with my mother every night to get me to sit still and put the creams on, so they didn't do much for me and after a couple of months my mother stopped forcing me to use them. I am now 24 and a couple of years ago I gave the steriods another try. My knees have re-pigmentated and so have my elbows and a couple of spots I had under my arms. My hands have not improved, I believe it is because that is where I've had vit the longest. Try rubbing the steriod creams into your sons spots in circular motions until the cream dissolves, that is the method my current dermatologist told me to use. Do it now that he has just been diagnosed. The longer you wait the less the chances are of it re pigmentating. Good Luck!
It doesnt matter big or small hospital they will tell you the same garbage - there is nothing we can do . Oh ok ok they might offer laser treatment but its expensive and if Viti is spreading then it useless , unless you are loaded with money .
Its all inside .
All those UVA , PUA light treatments are useless only mess up your appearance and hell knows what else . If these POO POO lights had any effect there would be no Vitiligo problem ...
I already posted whats the secret of Viti , and it can do no harm .
He should have blood tests and I take our daughter to a larger hospital My docotr called it a vitiligo panel and a auto immune panel. Thyroid disese is common with vitiligo. Also i have found a pediatric dermatologist is a good choice because they know all the options for kids.
My daughter has Vitiligo , she is 7 and has had it for 4 years, It is really extensive even causing gray hair. Last month she was diagnosed with Celiacs which has been recently linked with vitiligo. I understand your concerns, personally I take my daughter to a childrens hospital and on her intial visit they ran a battery of blood tests which include tests for thyroid diabetes etc. Than anytime we have new sympotoms i.e. the gastro problems they run blood tests again. We tryed protopic and that did not work now we have moved on to Lidex. The options for treating children or more limited than those for treating adults because of the possible side affects of those treatments. It has been 4 years our family has been dealing with vitiligo. Personally I think my daughters spots are unique and beautiful, but I am aware that children are cruel. I hope your son starts to have an easier time and you find a cream that works.
My daughter is 8 and she is having viti for 1 year. I can really understand your situation as a parent how you are.Mind is not stable.
Tony , you take all the good supplements ... but you forget the most importan one - amino acid Tyrosine . Oh and B6 of course, without B6 tyrosine is useless .
Tyrosine is responsible for skin pigmentation .
Sorry to hear of your experience. Many of us know how you feel. I have had vit for less than 2 years now. I'm 43 going on 44. I have kids too, and my oldest is almost 14 as well. If he were to get vitiligo, it would break my heart. Mine showed up on my forehead too. I've had and am still having excimer laser treatments that have been working a little. I'm also using Protopic. I'm also taking a slew of vitamins - multi, D, C, coq10, alpha lipoic Acid, fish oil, B12. Keep doing what u can, and stay strong for him. I know how concerned you are, but I think it's best for him to see that his mom stays strong and confident through this ordeal, which could truly be a long road. Best wishes and God bless.