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下面是我在VITILIGOSUPPORT上发的贴子, 有的妈妈给的信息,贴出来给大家以供参考.
我询问的是供婴儿用的药物问题
RE: Is there any medicine for babies with vitiligo?
Tuesday January 13, 2004 6:18 AM
Hi, Mom!
Protopic 0.03% is approved for use in children. There was a mom on here at one point that was using it on a six month old. I would get it as soon as possible, and start using it on any areas that are already affected, and also any that look suspicious. You can read about it in the FAQ to the left, on the Protopic message board, or there is tons scattered throughout the site if you do a search. Just change it to "keywords in title and post" to get the most info.
My 11 year old daughter has been on Protopic, although it's the stronger version, since July '02 with amazing results. She has had extensive repigmentation, although she still has a long way to go.
Good luck!
Cindy
这位妈妈说到0.03%是适合婴儿用的,也说到她的11岁的女儿用了有些效果.
Message #79418 - This was a reply to message #79410
vvitiligo
Member
Total Posts: 6
RE: Is there any medicine for babies with vitiligo?
Wednesday January 14, 2004 7:03 PM
Hi
My son is 5 and he has vitiligo on his face,neck, going down his arm, back and front, a spot on his stomach. He has white eyelashes, eyebrow, and some white hair on his head. He got his vit last Aug and it has spread pretty fast. We are also using Protopic 0.1% 2 times a day along with light treatments 3 times a week. Since we have been using the Protopic he has really started to freckle. This medicine is really worth getting. I know as a mom how upsetting this is to you. I have spent many hours in tears. But please have faith and hang in there, this is a great site to boost your spirit and help you get through those bad days.
Take Care
Netta
这位妈妈说到她5岁的儿子的BB在脸上,脖子上,胳膊上,背上, 肚子上都有BB, 睫毛,眉毛,头发都有BB, 他用0.1%的PROTOPIC一天俩次,光照三次一周.效果很好.
Message #79536 - This was a reply to message #79410
vvitiligo
Member
Total Posts: 6
Member
Total Posts: 248
RE: Is there any medicine for babies with vitiligo?
Thursday January 15, 2004 9:56 PM
Hi May,
I have vitiligo and my almost 2 year old was dx with it 3 months ago. His dermatologist told me to go ahead and use my protopic .1% strength and see what happens. So far no change for the better or worse. He has a small spot on his arm and a tiny dot on his tummy. Try to get it. It works for many people! Good luck and remember as long as you instill with in him a strong sense of who he is then it doesn't matter what he looks like!!!!!!
Priscilla
don't let spots get in the way of living!
Message #79641 - This was a reply to message #79410
Netta
Member
Total Posts: 58
RE: Is there any medicine for babies with vitiligo?
Saturday January 17, 2004 6:36 PM
---QUOTED---
When you say with light treatment, do you mean sunlight?
---END QUOTE---
Hi May
No not sunlight, he stands in a box (light a tanning box) and gets the NBUVB treatment for 2 1/2 minutes.
---QUOTED---
when you take your son out to play, do you put on sunblock lotion
---END QUOTE---
At this point I don't do anything different then I did before. Now as always, if we are out for a long time then yes I would put sunblock on him. I am really trying to be as normal as possible at this point. And of course still being kinda new to all of this, I like you will be doing alot of experimenting with what I can and cannot do. By the way, sorry it's taken me awhile to get back to you but we had some computer problems.
Take Care
Netta
Message #79745 - This was a reply to message #79618
vvitiligo
Member
Total Posts: 6
RE: Is there any medicine for babies with vitiligo?
Monday January 19, 2004 2:46 PM
Thank you!
---QUOTED---
as long as you instill with in him a strong sense of who he is then it doesn't matter what he looks like!!!!!!
---END QUOTE---
That's absolutely right! Thank you.
Message #79839 - This was a reply to message #79641
vvitiligo
Member
Total Posts: 6
RE: Is there any medicine for babies with vitiligo?
Monday January 19, 2004 2:56 PM
Netta, Thank you. DO not need to be sorry, everybody has lots of work to do. I really appreciate your information.
---QUOTED---
he stands in a box (light a tanning box) and gets the NBUVB treatment for 2 1/2 minutes.
---END QUOTE---
So... you actually bought "a box" like that? How much would a machine like that cost? I thought they normally get treatment like that at the Doc's.
Do you give him vitamins? Vitamin C? Vitamin B? B-12? B-Complex? Multi-Vitamin? What kind? I read some people's success stories, I noticed they all add lots of vitamins to the treatment.
God Bless
May
Message #79840 - This was a reply to message #79745
Netta
Member
Total Posts: 58
RE: Is there any medicine for babies with vitiligo?
Monday January 19, 2004 5:27 PM
---QUOTED---
he stands in a box (like a tanning box) and gets the NBUVB treatment for 2 1/2 minutes.
---END QUOTE---
Hi May
Micah gets his light treatments at the Doctors office. I would love to purchase a home unit someday but can't afford it right now. We drive 45-60 minutes (1 way) to the Doctors office 3 times a week. It gets very hard sometimes, but we do what we need to do for our kids.
---QUOTED---
Do you give him vitamins? Vitamin C? Vitamin B? B-12? B-Complex? Multi-Vitamin?
---END QUOTE---
It's funny that you should ask that right now because I'm working on that information as we speak. Trying to get all the info on what and how much a child his age and size should get. I agree with you everybody seems to be doing better with the added vitamins. Do you have your son on any vitamins?
There is SO MUCH to learn about this disorder, and sometimes it seems so mind boggling. So I'm kinda going slow and easy so I hopefully get everything right. By the way, did you decide to get Eric started on Protopic?
Take Care
Netta
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