There is very little information on the internet for parents of children. The internet has become a very alarming and frightening place for parents to find information. One to one support is available for parents from the Association.
One of the better articles about childhood LS. http://www.naspag.org/?page=pediatricvulvarliche
An American doctor is concerned about the lack of education and the effect is may have on children.
Do you want to see a change here? If you are a parent, do you want to help make a difference for the children who are growing up with LS? Would you contribute to the work of this Association? If so, please email to firstname.lastname@example.org
Please remember that your child is not an experiment for you to try out the ideas of those on the internet who give advice about home remedies (often in good faith and for adults only) and to use vinegar as a form of treatment. These well meaning sites never make a distinction about adult LS and childhood LS and parents are mislead. Recently this non-profit has been approached to support a young mother, now suffering severe depression because she followed some advice on a website to use vinegar for LS. Her child suffered dreadful agony as a result of this and the young mother is suffering from feeling that she has abused her child. She has asked that this message be put here so that other mothers and children do not suffer. There is no doubt that more information is needed for parents of children, who are driven to search the internet because they do not believe in steroids and that there must be something more or something natural. LS is not natural. LS is an inflammatory condition and steroid treatment helps to keep the inflammation and the resulting damage, controlled in 70% of cases. Abandoning steroid treatment can lead to complications for children in later life. A suitable compromise can be made by using steroid treatment alongside holistic treatments, working with a reputable holistic doctor who will not ask you to stop steroid treatment but who will work with you and your child to support quality of life.
DIETS and children with LS
There are no medically researched diets that have been proven to help LS in adults or children. Many popular diets promoted on groups and forums are about excluding foods that may be essential to your child’s healthy development. Some members of the medical professional are happy to suggest that an anti-inflammatory diet may help (still no proof that it will) and the Mediterraean diet is promoted as being anti-inflammatory.
The World Health Organization has recently given information about the dangers of too much sugar in the diet (children love sweets!) Sugar is thought to be a cause for inflammation.