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Discussion Starter · #1 ·
Has anyone heard of this before? My dd is 28 months old and has has open sores on her genitals since she was 8 months old. She also has sores in her mouth at times. The sores on her genitals go away for anywhere between 1 week and 2 months but they always come back. When they "go away" they just close up and do not bleed. They are always there as large 'lumps' for lack of a better word. When I was washing her in the shower yesterday, it felt like a ball of poop and it took me a second to realize it was one of the sores. At first we thought it was a bad diaper rash and treated it as such. She has seen numerous pediatricians and dermatologists. The one ped derm said to be "the best", diagnosed it as chronic diaper dermatitis. I do not believe that is it. We saw him about 3 months ago and he said that when she potty trained it would go away. I have never felt OK with that diagnosis. She is not ready to train and I do not want to push her.<br>
I am sorry this is so jumbled. I had let it go for a while trying to believe that it was just what the Dr said. Everytime I look into a diagnosis it I cry. It breaks my heart to se these sores on my poor baby. They cause her so much pain. They have been biopsied and she has had steroid creams as well as injected steroids with no improvement at all. My ped is very good and has been doing some researching as well. He is the one that suggested Behcet's disease and from what I have been able to find, it sounds fitting.<br><br>
Any advice you might have is greatly appreciated. I will try to post pics when she wakes up from her nap.<br><br>
PM me if you need to see pics.
 

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no help here, just sending love and hugs! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/love.gif" style="border:0px solid;" title="love">
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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Do you think it's behcet's disease? Info on the internet said the disease doesn't appear until the 20s or 30s, and that inflammation would appear other places, as well. Is that the case? I'm not really sure what to tell you. Have you used anti-fungal creams? I'm just grasping at straws there, I'm sure you've tried it all. I would just continue to seek out other doctors as long as you feel uncomfortable with what they're saying. And hopefully, the doctor who said it will go away with potty training will be right. Do you use cloth or disposable diapers right now? Maybe try the opposite of what you use to see if it helps?<br><br>
Good luck--<br>
Beth
 

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tnrsmom - I'm sure you've googled your brains out, but just in case I wanted to let you know that when I googled "Bechet's Disease Children" I found TONS of links. It certainly sounds like your daughter's symptoms match... is your ped going to order the test?<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I'm sorry your baby is having to go through this pain. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">
 

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I opened this thread because I had never heard of Behcet's disease and wanted to know what it was.<br>
Anyway, I wish I had some knowlegde of this for you, I am so so sorry your dd is in pain. Also <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> to you ,how upsetting this is for you.
 

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I had to go to a specialist in the dental department of our local university because of recurring canker sores. That dentist asked me if I ever had sores in the genital area because there is a disease that can cause it, which is the disease that you mentioned.<br><br>
I don't know what the treatment is for it, but you may even need to go the dental route, find a specialist and ask how it's treated.
 

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Behcet's Disease is an autoimmune disorder. I am so sorry that your little darling has to go through this. Hope this points you and your ped into a direction that he might not be considering but might be a strong possibility.<br><br><a href="http:/vaccines/autoimmune1.htm" target="_blank">http://www.*********/vaccines/autoimmune1.htm</a>
 

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Oh, Steph! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br>
I'm so sorry you guys have been dealing with this. I can't imagine how frustrating it is.
 

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Wow tnrsmom I am so sorry that you sweet dear is dealing with this. Hugs to you and your sweet dd.<br><br>
I want to lend a soothing tea recipe to you that you can use as a soothing wash for your dd. It may not solve your problems but it will help to ease any discomfort and soothe the sores. They look so angry and tender. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
Take 1 tablespoon of the following herbs and infuse in boiled water for 15 minutes. allow to cool and use as a wash or in the bath for a soak.<br><br>
Chammomile flower<br>
Calendula flower<br>
Marshmallow root<br>
Burdock root<br>
Lavender flower<br>
Comfrey leaf<br>
Nettle leaf<br>
Red raspberry leaf<br>
Lemon Balm<br><br>
I hope this helps .....I feel for you.....I will do some research on my end too.
 

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Discussion Starter · #12 ·
Thanks so much everyone. This really is a miserable *thing. Gitti I am going to go through my records again and post in vax. Thanks for the link. Another thing we thought it may have been was also on that list, Bullous pemphagoid. Interesting.<br><br>
Beth, we have tried switching to sposies, all sorts of creams and Nothing seems to help. There are rare cases of Behcet's in children and her symptoms are fitting.<br><br>
Shannon, that is good to know about the dentist. Could you possibly PM me with his #? I would like to search all areas possible.<br><br>
dragonfly, I am going to talk to the ped again tomorrow or Friday.<br><br>
Mountain mom, I will go to WF tomorrow and get the herbs. she loves baths so hopefully it will feel good.<br><br>
Again, thanks for all the hugs. This is probably the saddest thing I have dealt with in my parenting.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> Sending you lots of love.
 

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Lesions in the mucus membranes are common in most autoimmune diseases. If you get an in depth description of anything, it will almost always mention mouth and vaginal ulcers or sores. Unfortunately, that doesn't help rule anything out.<br>
I think the mouth is most often involved because we are always putting stuff in our mouths, some of which are triggering. Along that line, have you considered stopping all treatments on her bottom except water?<br>
I'd really like it to be something else because..well you know.<br>
I have very painful mouth ulcers, sometimes upto 20-30 at a time. I haven't found anything that really helps them, except the benzocaine. That's a mixed bag because it stings when it goes on.<br>
Do the sores always have a cancre, ie are volcano shaped, with a depressed shiny red center at some point? You describe a lump, it that before it crests or after it starts to heal? Are the several types of sore, or all those different stages of healing?
 

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You know, it just doesn't look like Bechet's typically looks. Those lumps are just not characteristic. Have you researched Sweet's Syndrome aka acute neutrophilic dermatosis?<br><a href="http://www.gwu.edu/~cotw/images/case2/gross1_640x400.jpg" target="_blank">http://www.gwu.edu/~cotw/images/case...s1_640x400.jpg</a><br><a href="http://www.netmedicine.com/img/img0077.jpg" target="_blank">http://www.netmedicine.com/img/img0077.jpg</a><br><a href="http://www.emedicine.com/derm/topic11.htm" target="_blank">http://www.emedicine.com/derm/topic11.htm</a>
 

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Discussion Starter · #16 ·
Apricot, I have tried not using anything but water to no avail. I also switched back to disposable diapers for a while again with no change.<br><br>
I am trying to understand the question correctly. Yes it always has a volcano appearance. When it is flaring, those open up and bleed from the center. When it is in remission, it is not bloody but does not go down in size. She has 2 or 3 main sores. These are always there. They are raised quite a bit and I can feel the scar tissue, IYKWIM. During a flare, she also gets numerous other red spots but they usually do not progress. I say usually because for a long time, she had 1 sore. Over time and through flares, some of those grew into larger sores to bring the total to 3.
 

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So the big ones are almost always in the same spot, but there's a constillation of changing small spots, too?<br>
Is she on any medications?<br>
Have the doctors drawn blood and done a full exam, or have they only been looking at/biopsing/treating her skin?
 

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I am grasping at straws here too, but since they started at 8 months when solids come more into the diet, have you kept a food journal to see if there is any corelation with the flare ups? Poor baby! They do look painful.<br>
Blessings for her healing...<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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Discussion Starter · #19 ·
Yes, the big ones have never gone away completely. They have only done the biopsy/treatment thing. The ped is going to call tomorrow and I am going to ask for the bloodwork to be done.<br><br>
I have not kept a strict journal but the flare ups do not seem to coincide with anything. She can be clear for up to a month and then all of a sudden they get bad again.
 

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I have nothing to offer but poor poor sweetie...good luck and hoping for a positive recovery for your dear babe...
 
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