My 5 year old daughter was just diagnosed with Lichen Sclerosus
Posted , 7 users are following.
Feeling a bit overwhelmed as my 5 year old daughter was recently diagnosed with Pediatric Lichen Sclerosus. Is there anyone here who has a child with it?
Her only symptom has been a chronic anal fissure since March 2019 that has gotten better than worse over time. She is on miralax, clobatesol steroid cream and we are using water wipes when she has a bowel moment too.
We did visit a naturopath last week and they gave us a cream to use that is a mix of calendula, lanolin and petroleum jelly that we use on her fissure.
Just curious if there is anything else you can recommend. We've been to 3 different doctors...one who said it didn't look like Lichen Sclerosus, but then the other 2 said it was. Her real only symptom has been the fissure.
Any help/encouragement would be great! I am struggling to find much info for Pediatric Lichen Sclerosus and would love to talk with other parents who may have kids with it.
0 likes, 24 replies
jackie15098 ellekay
Posted
My daughter works for a dermatologist and they have a eight year old girl with this. I also was diagnosed with this six months ago and have been on that cream (short name, Clob). That cream has done me wonders and that seems to work for a lot of people that I know. Did they do a biopsy on your daughter? That needs to be done in order to diagnose this disease. As I was told by my gynecologist, it is just bad luck that we got this. This disease does not discriminate. My mother had it back in the 70s but she did not really know what the name of it was. She had the same symptoms that I had. In the beginning before I was diagnosed, I changed my underwear several times a day, change my toilet paper several times a week, I tried everything until my gynecologist did a biopsy and it came back as the lichen sclerosus. A biography MUST be done to determine what this is, So that it can be treated accordingly. Please keep us informed.
ellekay jackie15098
Posted
No, they didn't do a biopsy, just a clinical observation. I am on an HMO insurance and it has been horrible...I can't get "2nd opinions" because they all say the same thing so that is why I am considering going outside of insurance coverage for her to get another opinion.
jackie15098 ellekay
Posted
It is worth going outside of your insurance and getting a second opinion and having a biopsy done, because that is the only way you are going to get the TRUE diagnosis of what this is! Don't Let anyone give you the runaround and tell you what they THINK it is, especially if you have not had a Biopsy.
sarb73328 ellekay
Posted
It seems we all have differing opinions on here about biopsies. I have never had one, but was diagnosed by a good gynae from his observation and my symptoms. I had the start of fusing labia but no white patches. My GP said a biopsy was not necessary. I would be loathe to put a 5 year old through one if it's not necessary but it certainly sounds as though you need further opinions as to whether this is definitely LS.
do21103 ellekay
Posted
Hey, i have lichen sclerosis since i was a little girl but was only diagnosed at age 19.
-Put LOTS of coconut oil morning and evening
-Find a pharmacy that can compound Traumeel in petrolatum 10%
You can can send my a private message if you have any questions!
ellekay do21103
Posted
Thank you! i am currently using a mix of calendula/lanolin/petroleum jelly on her in addition to clobetasol. I havent heard of Traumeel- will need to look into this, thanks!
suzanne25846 ellekay
Posted
After being diagnosed with LS in 2015 after thinking I just had thrush it made me wonder if I had LS when I was a little girl as I often had thrush. Cotton underwear has been the only thing I have worn since since. Later when the thrush felt constant I looked at my diet which helped but didn't address the underlying condition. It has been great to read that fissures can signal the beginning of LS which I had before diagnosis. I am now realising constipation is also related.
For me the way to ease the anxiety is the deal with what the body is presenting and keep focused on dealing with that as best I can and not wish it wasn't there or would go away. LS is manageable and I just have to be more aware of "down there" than most people do. It's wishing it would go away that can make it worse as it is kind of like being in denial and then I stop listening to my body when it tells me it needs cream today. Keep looking for the right doctors to support you or get them onto information to support them. It is really important for the medical profession to be aware LS appears in children and not to brush it off as just thrush. (I also have a girlfriend with LS who feels she had it when she was a little girl so there would be more awareness of this to share). I really appreciate knowing this and I wish you well in finding the best support possible for you and your daughter. xx
ellekay suzanne25846
Posted
Thank you so much for your words. I agree, focussing on the issues that are presenting themselves and being as on top of it as I can be for her. I appreciate it