Daughter with LS
Posted , 9 users are following.
Hi, Just found this forum and I'm sure if I looked through all 47 pages I could find some info on daughters but I am a busy mom! My 10 year old daugther was diagnosed with LS 1.5 years ago. She does not have any symptoms other than whitening of the skin, and upon diagnoses had one "blood blister" looking spot. We did 14 monthsish of clobetasol steroid treatment, slowly tapering off. It worked, her LS was gone a few months ago.. but I just started noticing whitening of the vulva skin again when I did a routine check a few weeks ago. I am SO discouraged. I hated using the steroid cream in the first place but couldn't find any evidence of natural remedies that worked, especially for young girls. I have read just about every article I could find on the internet about this but there is so little info about young girls other than "use the steroid cream, some girls grow out of it, etc"
Any other mom's out there with advice or encouragement? I feel awful for her and don't want this to be something she struggles with for her whole life. I am convinced it is something inside her body that is off. We are currently seeing a Naturopath along with the children's dermatologist... and doing a gentle homeopathic liver cleanse along with a homeopathic cream twice a day. I haven't noticed a difference yet. We go back to the derm at Children's hospital at the end of the month and I know he'll want to put her back on the clobetasol 
Any advice or encouragement is appreciated. Wish I could find some moms who have helped their girls go into remission naturally!
0 likes, 13 replies
cheryl33619 grace711
Posted
grace711 cheryl33619
Posted
She thankfully doesn't have any itching.
mary09950 grace711
Posted
I am using the Clobetasol as maintenance twice a week as recommended by gynecologist. I think you should discuss with your physician how you should continue to treat. I believe Clobetasol is a good treatment so I don't know why you are afraid of using it especially if it proved to help with the problem. From what I've read about LS it can make vulva cancer more likely but if treated with Clobetasol the risk is less.
Good Luck!
Anna777 grace711
Posted
Hi Grace,
I don't use steroids, and have elimated the white areas and fusing with the use of sodium borate (Borax). I know it sounds strange, but read the thread "An experiment with Borax" for detailed info. I've been using it for over a year now with no side effects.
grace711 Anna777
Posted
I read about borox on another forum... do you take it internally or bathe in it? I'll look through that thread. thank you.
Anna777 grace711
Posted
Hi Grace,
I do not take it internally. I bathe in 1/6 cup in a bathtub a couple of times a week. On the days when I bathe in baking soda (1/3 cup), or just plain water, I apply a saturated solution of Borax with a Q-tip. A saturated solution is when you stir borax into water (any amount) until the crystals no longer dissolve. Another lady on this site, Hanny, also adds a few pinches of baking soda to a perineum bottle and sprays it on after every bathroom visit. I've started do that as well. Both the baking soda and the borax treatments have done wonders for me. Another thing your daughter should consider is not wearing tight pants, only wear cotton panties, and avoid using any soap or body wash. The soaking baths are very cleansing, and soaps, etc can be irritating. Avoiding wheat, dairy, sugar, and acidic foods also help.
grace711 Anna777
Posted
Thank you so much for the referral to the thread and your response. I just spent a very long time reading through the forum and am definitely intrigued. Though I don't see anyone that has used it on a child so I am worried it will sting. I wish there was a more specific recipe so I don't overdo it. We don't use harsh soaps or body wash, she wears cotton undies only, we eat very limited wheat, dairy and sugar as well. We really are a fairly healthy, clean and natural family! This diagnosis was really tough. Thanks for the input. This site is great.
Anna777 grace711
Posted
Your daughter is lucky to have such a caring mom, like you. I know how hard it is when your children have health problems. But the good news is, this thing can be controlled and improved. And I've read from other women who were diagnosed very young, that they had later gone into remission, so there is hope!
Wero grace711
Posted
Hello Grace, it must be horrible for both of you dealing with this.
I don't believe the treatment is any different whatever the age. Topical
steroids are a must for me just as maintainance twice a week. I think it is
important to be open minded and not too rigid in what you suggest for
your daughter. There is no reason why you can't use a combination of
medical and homeopathic remedies. I tried everything and found what
worked for me. We are all individuals and respond differently to different
treatments. Whatever you do I feel sure you will find the right path and
good luck to you both.
Wero grace711
Posted
Hello Grace, it must be horrible for both of you dealing with this. I don't believe the treatment is any different whatever the age. Topical steroids are a must for me just as maintainance twice a week. I think it is important to be open minded and not too rigid in what you suggest for your daughter. There is no reason why you can't use a combination of medical and homeopathic remedies. I tried everything and found what worked for me. We are all individuals and respond differently to different treatments. Good luck with whatever path you take and we are always here for support.
jobeth grace711
Posted
I just signed up for an account after reading this post and comments. I have tears... we have been on the journey since march with my 6 year old. Clob twice a day... much better but when we stop Clob it gets yucky down there... I am big time on the natural journey to help her heal. And I'm honestly weary. I AM though seeing a difference and perhaps even healing doing gluten, dairy, sugar free and adding in probiotics and fish oils... my daughter too was getting little blood blisters. They would start near her bottom and then spread out further from the area the next day.. we just saw a gynecologist at Duke and she said a small amount of Clob is ok... just try to taper off. I'm praying for healing... I'm googling all I can .... I'm trying so hard to heal her little body... hang in there... following this.. keep us posted.
sara53145 jobeth
Posted
It's so awful when these young girls are diagnosed. How do you know the gf/df/sugar free diet is helping if you are also using clob twice/day? I am asking because a couple girls in our family have been diagnosed
I'm glad there is a support system here!
grace711 jobeth
Posted
I haven't been on here in a while as my daughter's skin was clear for a couple of months, but she seems to be having a flare up as we noticed a blood blister type sore last night, and now a little tear this morning that is painful when she spreads her legs. This is such an awful and confusing disease for young girls. We did a gluten and dairy free diet for 6 weeks a couple of months ago and it is really hard when you have 4 children! We do eat organic and whole foods mostly, but they have treats/bread on occasion and it is hard to completely avoid with school activities, etc. Jobeth how is your daughter? Are you still doing the Clob twice a day every day? I emailed our dermatologist at seattle children's and he wants me to go back to the Clob M-F until our next appt in October. I HATE using the steroid and am afraid of the long term effects of it. But I don't want her to have permanent scarring. I read through the whole borax forum and mixed up some of that which I will try. I also made a castor oil mixture with the lavender and lemongrass EO. Have you found any other good research that has helped? I am also praying constantly for healing and wracking my brain trying to figure out what is off on her body and what caused this. She has never had any vaccines and I am VERY conscious of what we use in our home and on our bodies. This is so hard