Thursday, July 30, 2009

Juvenile Xanthogranuloma

You've probably noticed the orange spots beneath Little Bean's eyes and spread across his cheeks. If you haven't, this pic is one of the clearest pictures I have of the spots (it also happens to be one of my all time favorite pictures of him!). :)

When Little Bean was about two, he started to develop very small orange spots around and under his eyes and on his eyelids. Our doctor didn't know what they were, so she referred us to a specialist--a pediatric dermatologist. It took a few months to get in to see the derm, and in that time, the marks were growing fairly rapidly. Of course, we were all concerned that it was something serious, and were anxious to see the derm in person. The derm felt that a biopsy was needed to make a diagnosis, so at two and a half, Little Bean was put under and a punch biopsy was done on the largest portion of the marks. This picture doesn't really show, but on the larger of the marks is a flesh colored, indented circle where the biopsy was done. It was supposed to be only a tiny line scar, but unfortunately, Bean pulled the stitches out in his sleep, and so now it is a much bigger, circular scar.

It was determined that Little Bean has Juvenile Xanthogranuloma, which is basically juvenile acne. It can affect children on any part of the body, usually the arms, legs or stomach, and rarely (like in Bean's case), the face. It does not hurt or itch, it is not contagious, it is not harmful to him in any way, and it is only semi-permanent. It can take up to 10 years to disappear, but the doctor did say that there is no way to predict how long he will have it, and how much it will grow. It is untreatable.

Little Bean doesn't remember his life without his "magic dot", so to him, when he looks in the mirror, "that orange thing" is just a part of his face. I'm so thankful that so far he hasn't been hurt by the questions of others, and that he can accept his looks and be happy about them despite the curious, and often hurtful questions of others. However, as he grows and becomes more self aware, I do wonder if there is anything I can do or say to prevent others from constantly pointing out his "magic dot" or to help Bean feel comfortable answering questions about it.

There are three situations where it normally gets pointed out, and I have pretty much figured out how to respond to the first two at least. Here are the scenarios that we often (I'll say at least weekly) encounter:

1) Another child points it out--"What's that orange stuff on your face?"

2) Another adult points it out--"Oh, honey! What happened to your face?! Did you fall and get hurt?"

3) Those who are already familiar with what it is (family and friends) point it out in his presence by asking me questions like, "Is it growing?", "When will it go away?", "Do you have to be careful about it in the sun?" etc, etc.

At first it made me really uncomfortable to talk about it in front of him, and I never knew what to say without going into a long story, but then I realized that he takes his cues from me. If I am comfortable with his face, so is he. So how I respond, I realized, is SO important. Since I realized this, my response is always something along the lines of, "Oh, that's Bean's birthmark. (even though it isn't a birthmark, that is just the most understandable way to explain what it is). He calls it his magic dot. It's magic because every time I see it I just want to give him a big kiss!" and then I proceed to smother him in "well-placed" kisses. The magic dot thing actually came from Bean. One day he came up to me and asked, "Mom, do I have a dot on my face"? I thought he was asking if he had "eye goo" or something because it was morning, but I couldn't see any, so I asked him where he saw it. He went over to the mirror and pointed out his biopsy scar, which is indeed dot shaped. I reminded him of the story of him going to the doctors and how they took a piece of skin and then sewed him back up. He responded with the question, "Is it my magic dot"? I thought that was a great way to describe it, so ever since then that is what we have called it.

I always wonder why people feel free to comment on this in front of Little Bean. We would never comment on an adult's appearance in their presence, so I don't see why people think it is appropriate to comment on a child's appearance. I also wonder how I can teach Little Bean to respond to these questions on his own and how I can protect him from feeling hurt or self-conscious when other's make these comments and ask questions.

Any advice? Anyone been through something like this?

19 comments:

Christy said...

I don't have any experience dealing with this. I have a friend with a 2 yr old son that has alopecia and no hair at all on his body. People are always asking her if her son has cancer, and they think nothing of asking this in front of him. I am looking forward to the responses of other people here so that I may be able to help my friend too.

Our Little Family said...

It sounds like you're doing a great job with it. I am always amazed at the things that come out of peoples' mouths. My sister has/had a large red hemangioma on the top of her head (it's still there but covered with hair now) and when she was a baby, people asked such...odd...questions. My mom got asked if something was wrong with only that baby (she's a twin), if it was cancer and when they were going to have it removed (when she was like, 3 months old). Ugh.

Anyway, I'm rambling. It sounds like you've talked about it and taken away any mystery and that's so good. And honestly, with a big, sweet smile like he has, I'm shocked anyone sees it at all. :)

By the way, I gave my daughter a bowl of grapes and a toothpick a couple days ago (after seeing your post). She LOVED it and I haven't seen her that many grapes in a LONG time! So... Thank you!!!

Julie said...

First, I just want to say that your son is SOOOO cute but of course you already know that:) My nephew was born with a cleft lip and semi cleft palate and I was floored by the comments my sister would recieve and they had no problem saying them in front of my nephew. Kids were always very curious about his scar too and would get lots of questions. He is now 16 and a very confident young man and I think it stems from how my sister dealt with it. She did the same thing you are doing. She called it his magic scar when younger and tried to make it no big deal when people asked questions. I know it must be frustrating especially from adults but it sounds like you are doing everything right!!!

Miller Moments said...

My son wore hearing aids the first two years of his life and I hated going out in public because people would ask weird questions or stare at his ears. (tiny ears, big hearing aids) I think you are doing all the right things. His value right now comes from you and if you show that it's no big deal, he won't really mind it all that much.

Nicole {tired, need sleep} said...

Your kids are adorable. I think you are handling everything with the questions great, but I wonder too why people feel it's ok to comment on things like this in front of children. It's almost as if we forget they are little people too. I think I've probably been guilty of the same thing a couple of times, even with my own child. I gave you a little award at mine today: http://tiredneedsleep.blogspot.com/2009/07/what-honor.html
I really love your blog!

David said...

My daughter, who is 18 months old, also has JXG (it developed at 2 months old), on her neck and nose.

I think your son is learning by example - he's learning that it's not a big deal, because you don't treat it as a big deal. You're giving him a lot of confidence that will carry him throughout his life.

I think some people just don't have manners. Hopefully we can teach our children not to be that way. The only time I've ever a parent about a child (and not within earshot of the child), is when I'm asking whether the child has JXG - since it's rare, it's always good to compare notes. (Usually, when I've asked, it's not JXG, but after explaining why I'm asking, people understand).

If you'd like to compare notes about JXG, let me know.

Jennifer said...

Wow, thanks for all the replies! Your stories do give me hope, and tell me that I am not the only parent who worries about these things.

David--I think it's perfectly understandable to ask about something like this when the child isn't present (espescially since you have a child with JXG), I just think it's really rude to ask right in front of him. I'm shocked to meet another person who has even heard of JXG...thanks for sharing. It's nice to know that others have even heard of it. :)

Jeff said...

Hello: you can learn more about JXG by checking out the
Histiocytosis of America's website at www.Histio.org. There is also a message board to share stories and ask questions of other families.

Hope this helps.

Jeff Toughill

Too Many Hats said...

That pic is so adorable! He has the biggest eyes. I think you sound like you have handled it really well so far. I can see that #1 and #2 will probably always be questions as these come from people who have not met him before. I think just letting him answer the questions honestly is a good thing. #3 would really irritate me and I would make a point to ask those people not to do that anymore - perhaps sending an email to them would be helpful. Tell them you are happy to update them on his condition, but would prefer to do it privately.

Lea said...

I have made it my mission to teach my sons that we don't stare at people who look different than us. I watch for it and correct them quietly if I see them staring at someone. I have also explained to them how it makes the other person feel when someone stares at them because they are different. We will have more talks about this as they get older and understand more.

I think you are handling the questions very well. At some point, he will be old enough to have an opinion as to how he would like to handle it too. That's how I feel about our situation. We are ALWAYS asked "are they twins?". I can understand why we are asked but a simple "no" or "no, they're not" usually does not do the trick. To date, I have typically explained our situation and I just make it seem like it is no big deal to be adopted and this is just how we built our family. Different situation but I understand the uncomfortable questions and how people don't think twice about asking in front of little ears.

Orange Juice said...

He is a doll! I love his little smile!

I have never heard of that, I will have to look into it more. I love how he calls it his magic dot.

I can't understand why when it comes to parening and children (no matter what matter) people feel the need to comment and teach. It makes no sense and is infuriating.

Anonymous said...

Congratulations to your kid to have a mom like you!!!!
He is adorable...
one of my twins who is a boy 7 years old was diagnosed when he was 2 by skin bipsy on his forehead with JXG; after couple of years he developed another lesion on his right eyelid. We took him to the ophtalmologist and thank God he has no eye involment; we also took him to an hematologist to check if was related with any "other sad disease" but he stated that he is fine.
There is no much literature about it and i did not know that it will go away.
My kid is also a happy camper about his condition, but in his case you can barely see his lesion.
I hope we can exchange more emails.
Please write at pillytwins@hotmail.com
Best luck!!!

Retro Mom said...

THANK YOU for the post! I just found out today this is what my daughter has! I would love to talk more to you. My daughter has one on her eye. I was hoping that no more would develop, but seeing the comment by 'pillytwins' I can see that it can. This just upsets me so much. There has to be a reason this happens. Hope to talk to you sometime. :) Thanks for the post. I dont feel so alone now. I wish there was more literature on this

Maria said...

Hi Jennifer, my 3 month old baby has been diagnosed with JXG since he was 11 weeks old (multiple skin lesions). I have been looking for an on-line support group for parents since copying with this condition has its challenges. I have my days that I am super positive that the spots will go away soon and there will not be grows in the eye or internal organs, and others days that I am extremely sad and upset.Do you know any group like this?. You can contact me at majosedf@hotmail.com. Thanks for sharing your story and by the way, your soon is a very very handsome boy Maria

Maria said...
This comment has been removed by the author.
PapaRufus said...

My 4 month old baby was diagnosed with JXG when he was 11 weeks old. He has a multiple expression of the disease and over 50 lesions on his body now (mainly on his head and face).I just wanted to let you know that I started to write a blog of our story (jxgonlinesupport.blogspot.com) to validate other parents feelings and to help us process what we are going t/h. I added a LINK section with tons of info. By the way,I also want to form a support group for parents that can meet online once a week. Any body interested? Please email me at: majosedf@hotmail.com

Suzanne said...

Hi there, just saw your blog from the JXG Online support site. Our son, Sean had surgery to remove his JXG lesion on his face and now has a 2 inch scar that runs underneath his eye. People commented before when he had the lesion, and still comment on his eye ("What happened? What's wrong with your eye?" etc). We told him it was a tiger stripe (he was 3 when he had surgery) so now he goes around telling people it's his Tiger Stripe, or my favorite, "a Tiger scratch". He doesn't know its there and its only because of others comments that he's even reminded. He has other new "spots" but seems to be holding at 4-5 and no systemic involvement. Your son is beautiful and I hope he grows up to be a confident, happy guy! Suzanne

Ratilda Hoyden said...

Hello! I found your blog just now, I am also homeschooling my two children (two girls). My younger daughter had first signs of JXG when she was 2 months old. I was breastfeeding her, so I decided to change my diet. I eliminated diary first. Then eggs. Her skin cleared up a little bit, but not completely. Then I met an incredible nutritionist who gave me an excellent advice which we still follow and my girl's skin is fine now. We eliminated all soy, gluten and pasteurized dairy products out of our diets. We drink raw milk and eat plenty of fermented milk products (yogurt, kefir, clabbered cream, whey) that we get from the farm that raises grass-fed cattle (no grain ever), we get our meat from there as well. We eat eggs from pastured chickens that eat no soy or glutenous grains. And, as I mentioned, no gluten. This diet had made some remarkable changes to our lives. First, my younger daughter's FXG disappeared along with her extreme colics. She's three now! Second, my older daughter's ADHD symptoms went away, she's very smart, concentrated and hardworking 6 year old now! And the atopic dermatitis that I had since my early school years also's gone! This diet requires a lot of effort, but if you want to try to just see if it would work for you, start with going gluten free and dairy free for two months. If you see any changes, you'd be encouraged and would go further, but gluten and casein elimination proved to cause the most dramatic changes in our health. Good luck yo you with everything! It is obvious that your children are beautiful, happy, and smart, keep up the great work!

Ariell said...

My now 5 month old daughter has been diagnosed with JXG. When she was born about a week or so after she had this weird looking thing on top of her feet and on her shin. I started to get worried and notified her doctor at her one month visit. Then at one month she started to grow another one on her right abdomen and another on her forehead. I havent seen any growth in them now that she is 5 months and I pray they dont grow. The doctors were telling me that they didnt know what it was and thank the lord a dermatoligist visited out island (Guam) and at least I know what it is. I just pray everyday that it will just go away like I told it should but reading negative things about it worries me. Shes a smart baby girl and isnt botheres by it and Im glad its nothing serious. I just hope it goes away, and reading this blog on how to respond if questions are asked. To me my daughter is a special baby with a gift from god.

Related Posts with Thumbnails