Lichen Sclerosus and Children

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.
http://archderm.jamanetwork.com/article.aspx?articleID=1724030

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 admin@lichensclerosus.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.
http://www.patient.co.uk/health/how-to-follow-the-mediterranean-diet

http://www.health.harvard.edu/fhg/updates/What-you-eat-can-fuel-or-cool-inflammation-a-key-driver-of-heart-disease-diabetes-and-other-chronic-conditions.shtml

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.

 

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Comments 1

  1. Honeybee

    My daughter has suffered with LS since early childhood. It has been quite a journey to get to where we are now. I can sympathise so much with the mother mentioned above – the feelings of guilt and hopelessness have been overwhelming at times for me. I have frightened myself silly reading the Internet and subscribing to certain Yahoo groups. The treatment protocol of steroids and emollient is critical for children, don’t let others mislead you. I urge any parents of children with LS to contact Fabia, she has helped my daughter to receive a CORRECT diagnosis with doctors who are leading experts, who have seen it many times before. My daughter has seen enough doctors and medical professionals who have examined her with a look of bewilderment on their faces and who clearly do not have a clue about how to treat or what to say – as a parent you do not need to accept this. Best wishes to everyone reading this, I hope you find some help soon, you have arrived at the best possible place.

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