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
Vita23 ellekay
Posted
I am so sorry your daughter needs to deal with this disease! I hope it turns out to be something else and not LS. LS does start with fissures and progresses to white patches, as well as atrophy down the road. Please, see a dermatologist, too. Clobetasol is a powerful steroid, but thins the skin long term. You do need to use moisturizers to prevent deterioration of skin layers. A dermatologist would be able to prescribe Protopic (Tacrolimus). It is a nonsteroidal medication and works like a charm. I read a study on it on pubmed.org involving pediatric patients, for whom it worked, and saw a dermatologist, so I can get it prescribed. I finished the course of treatment a month ago, and the skin did recover. I wish it were available years ago, when the fissures first appeared. Also, check her for Lyme. I truly believe an infectious agent is behind LS, and there is research connecting LS and Lyme. It is an easy blood test.
ellekay Vita23
Posted
Thank you so much! She has been to a dermatologist twice and we have another appt in March. They did bring up Tacrolimus and I was hesitant about it. But I need to do more reading on it.
With the Clobetasol regimine, we are on once every other day treatments currently.
Interesting that you bring up the connection with Lyme disease. My sister tested positive for Lyme disease and she has battled auto immune issues (Hashimoto's) for years.
I will bring this up with the dermatologist at her next appointment. Thank you!
Vita23 ellekay
Posted
I think I should mention here that the problem I had with Tacrolimus was initial 12 hours of burning; then the burning suddenly stopped. Other people also wrote about it on forums, so I knew it was temporary and would go away, as it did. It happens, when the skin is very damaged, like in my case. You daughter has just had symptoms, so it should not be that bad, plus it is not the vulva,so hopefully this one problem would not affect her should you choose to go with it.
I also listened to a podcast with a functional dermatologist who said B12 cream can be soothing and curative in vulva dermatitis. I am not recommending it, because I had not tried it myself, but I wonder if B12 has something to do with LS, too. My LS progression correlated with my B12 going down over the years per labs.
ellekay Vita23
Posted
Thank you so much for your thoughts. I am finding I am getting the run around from the drs/dermatologist we have seen. I am doing a lot of research myself since I feel her doctors are not being especially proactive about it.
We did see a naturopath who recommended doing allergy testing as some foods could cause the flare ups if my daughter has a sensitivity to them. Since is is auto-immune, food eliminations seem to be where some naturopaths lean. Have you tried any of that?
Vita23 ellekay
Posted
I don't like eliminating foods unless there is a clear causation link between food and symptom. I would switch her to all organic as much as possible. I did test my kids for allergies and eliminated only those that the test showed reactivity for. I would go with blood test, though. The back test they do is a little bit painful for kids. In the case of my most reactive kid, who also has had high histamine reactions, I do not force her to eat anything she would not, and also every summer I make sure she gets a month of sunbathing for the vit D and relaxation. Her blood test did show a slight reactivity to peanuts, which greatly surprised me as I fed her so much peanut butter sandwiches, and possibly caused her problems. I also checked her immunoglobulins (doctors don't think about it unless the kid is very sick) and found out she was low on most of her pneumococcal antibodies, which I am taking care of with betaglucans, vitamins, elderberry syrup and sunshine during the summer, and I am planning to check her for Lyme and EBV. So, I would not despair about your daughter's situation. Check her for Lyme and EBV. These often go together and cause immune dysfunction. You are taking care of her problem early, and hopefully it will resolve. If not, there is always Tacrolimus and antibiotics if positive for some bug.
ellekay Vita23
Posted
The naturopath we just saw recommend us to do some food testing (blood test) and see if there are things on there that she is more reactive to and then go from there. We wouldn't eliminate things unless she showed to have more of a reaction to it.
What is EBV?
My sister has recently tested positive for Lyme after battling auto immune issues for 5 years. This has been a recent discovery and they are trying to treat the Lyme now, too. I can ask about testing for that as well. My daughter's pediatrician won't test for food allergies unless we are aware of issues, and won't test for Lyme. So we would need to do it through the naturopath.
Thank you!!
jackie15098 ellekay
Posted
when you start that cream Clob It should be done twice a day and then after two months go to once every other day.
jackie15098
Posted
If you can’t get the correct diagnosis go to another doctor especially if you feel that is liking LS... I do not know where you live but in the United States you have the option of going to different doctors if you do not like the opinion you’re getting from your present doctor. I personally do not feel that it has anything to do with food or anything as I was told it is a case of bad luck! All you can do now is fix it going forward.
ellekay jackie15098
Posted
Hi Jackie,
We did start with 2x a day for one month (as per the dermatologist) then went to 1x a day for a month and now on every other day.
What is difficult is that we have KAISER Insurance so essentially, what you hear with one dr is the same thing you will hear from another one. in our experience, it has been very difficult to ever get a 2nd opinion with them.
I have reached out to my old dermatologist who is not with kaiser and am hoping to get my daughter in to see her, knowing that we will have to completely pay out of pocket.
Vita23 ellekay
Posted
EBV is Epstein Bar virus. Doxycycline should clear Lyme. You can also check your daughter's CRP and ESR (blood tests) for bacterial infection.
ellekay Vita23
Posted
Thanks for the clarification!
ginny00059 ellekay
Posted
Hi
i developed LS since going through the menopause but i now realise that i had what must have been LS as a pre- pubescent child. Unfortunately 50 years ago they didn’t know enough about the condition and so i was never diagnosed with it, I was diagnosed with an auto-immune disease instead as they noticed i had an iGa (specific antibody) deficiency.
My symptoms were exactly like my symptom’s now - soreness, stringing, itching to the vulva and the skin would break down. My mum found the only thing that really helped was at the time was lanolin and she used this morning and night for years on me along with thrush cream. i could only tolérante cotton underwear too. I started with it as a baby and had it until i was about 12 years and then it seemed to weirdly resolve. Then after having a baby when I was late 30s I was referred to a urologist due to post natal problems and he noticed skin changes to my vulva but didnt diagnose me with LS at that time. i was diagnosed about 5 years later when things had got alot worse. In hindsight i was starting perimenapause in my late 30s which seemed to re-trigger the condition. When i discussed it all with my gynaecology dermatologist he agreed that probably what i had was LS and that puberty can cause it to resolve. I never had anal fissures as a child my symptoms were all vulval, I can't remember a great deal about it as a child, it upset my mum more than it upset me, i think i had adjusted to the constant irritation and discomfort as I had had it from being a baby I remember having copious amounts of lanolin slapped on. It didnt stop me going on to have a healthy sex life and, children of my own, its disappointing for me that it’s affecting me now again in my 40s and 50s! Don't worry too much, kids are resilient, I didnt sustain any fusing of the vulval tissues as a child, that has happened as an adult. I do wonder if my mums use of constant emollients protected me from that.
I hope your daughter grows out of it too!
ellekay ginny00059
Posted
Thank you so much for your encouragement and I would agree, it's hitting me harder than it is my daughter. I think because I can see where it might lead and that breaks my heart that she might have to deal with that.
We did get a lanolin cream that we put on everyday and I will continue that for her in hopes to keep the skin healthy and fissure free.
sarb73328 ellekay
Posted
So sorry to hear this, ellekay. I have heard (as with your experience) that LS can clear at puberty but also not recur - I hope this for your daughter. I am concerned about my 2 year old grand daughter who occasionally complains of itching and soreness. I have had a conversation with my daughter-in-law about me having LS although have not named it because I am concerned she will look it up and see all the horror photos and really worry. . She has had my grand daughter examined and had the all clear so that is a relief but I still worry. I don't want to alarm my son and daughter in law by going into details but equally want them to be aware. I ask from time to time how she is in that area and think that's the best I can do for now. If I were able to tell them of a treatment that would cure her all would be fine. LS is so depressing.
Also, is there not a less strong steroid ointment for your daughter than clob? I use betnovate, which I believe is weaker. It seems strange that doctors have put her on the strongest already esp given the fact she only has one symptom. Might be worth the ask.
Wishing you and your daughter all the best. Definitely keep all the moisturising going too - its a must for all of us at any age.
sarb73328
Posted
sorry, my post should read 'as with ginnyoo's experience' regarding LS clearing at puberty. I was getting ellekay and ginnyoo stories muddled!
ellekay sarb73328
Posted
I am definitely praying that she will be among the percentage that will have this resolve by puberty.
It seems like this is such a rare thing for children. I am not finding drs have much experience with children going through this, but more with older women.
They originally started her on hydrocortisone and it really wasn't doing anything. I will ask about the betnovate.