I have SOOOO many pictures from Christmas to look at and edit. I found 3 of the girls that I thought were very cute. I'll add more later. The picture with Abby and Kate together in their pj's is very cute. When we had Abby, I wanted to start a family tradition of sorts. Michael and I thought that it would be really neat to give Abby a gift on Christmas Eve night for her to open. The gift is the same every year...pajamas! I love pajamas and so does Abby! I look forward to shopping for her special "Christmas pajamas" every year. After she opens her present, she can put them on to wear for Christmas morning! (I have pre-washed them of course!) I love our little tradition and I got to carry it on with Kate. Abby and Kate had matching (different colors, same design) p.j.'s this year!
On to Kate's arm...a couple of months ago Kate got what appeared to be a pimple on her arm. I didn't think to much about it. Then it didn't go away and it started to get bigger. I was going to wait until her next well-baby checkup to talk to the Dr. about it. Well....I was talking about it at work and someone said it could be a staph infection. I quickly made a Dr.'s appointment and we went in. The Dr. said that it wasn't a staph infection, but he wasn't quite sure what it was. He made us an appointment with a derematologist. People have said it looked like a wart, mole, etc.... I wasn't too worried. We went to the appointment yesterday and the doctor at first kind of said hummm....and wellllll....I believe it is juvenile xanthogranuloma or JXG. He started to explain it, but all I heard was tumor and could lead to problems with her eyes. I immediately started to cry. When he saw me crying he said that he didn't mean to worry me! I wanted to say "Well what did you expect??!!!" He said that it is very rare and that he has only seen 1 other case of it. He left the room to go read up some more on it. He came back with better news. It probaly won't affect her eyes because the JXG is not on her eyes it's on her shoulder and the tumor is benign. He brought in another dr to look at it. This dr has seen them before and he said that it is most likely JXG but not to worry. We have to have it removed. Since she is so young they can't just do a local anathesthia and then cut it off. We are meeting with a surgeon on Friday to see what and how this needs to be done. I'm very nervous but I'm thankful it's nothing too seriously bad. I've done a lot of reading up on this in the past 24 hours and I feel a lot more better about it now than I did. Unless the JXG was on or IN her eye, she will not have to worry about her eyes. The dr still wants us to go and take her to the eye doctor to be on the safe side.
Please keep her in your prayers. I don't want them to have to put her to sleep to take this thing off, but if that is what has to happen then we will do it. We've prayed over Kate and I have complete trust and faith that God is watching over and protecting her. Our church has been handing out prayer cloths and Kate has one under her mattress that she is sleeping on this very second.
I'll update everyone after Friday!
Here is Kate's JXG!!! :(
TWINKIES!!!
3 comments:
Hi, I caught your post on Google, because you mentioned JXG.
Our 11 month old daughter has had JXG on her neck and nose since she was one month old. I'm not a doctor, just a parent that has done a lot of reading.
First off - it's not a bad thing. If it is JXG, it shouldn't hurt her, and she shouldn't notice.
Doctors aren't sure exactly what causes it, or what causes it to go away. It just 'does'. They usually don't recommend surgery, as the surgery could cause scarring that might be worse than the original JXG. (Remember, a surgeon is in the business to perform surgery - they WANT to do surgery, so take that into consideration when talking to a surgeon).
Our primary didn't know what it was, and sent us to a dermatologist. They excised it and sent it to a couple of different labs, which confirmed JXG (as opposed to anything nastier). It started the same way - as a single 'pimple' that continued growing. That was at three months old. Shortly after it was cut off, a bunch of tinier ones grew on the neck (and then on the nose). It wasn't as large, but they took up much more area on her neck.
We ended up going to a second dermatologist for evaluation (a children's specialist), and they agreed that it was JXG. They want to do blood work to make sure everything is okay - JXG *might* be related to family cholesterol problems, so our daughter might have a raised cholesterol - but we've chosen not to subject her to that. Doctors in general do think it has something to do with white blood cells attacking healthy, fatty tissue. It's not a big concern, just a result of that happening (doesn't mean that her white blood cells don't work).
Over the last three months, the JXG has gotten lighter, and a bit smaller. It's gradually getting to be skin tone. It's still got a ways to go, but we feel like we're starting on the downhill side of this. We're not nearly as concerned as we used to be.
We have also been referred to a children's ophthalmologist - he has looked her eyes twice, and will do so one more time. He isn't concerned in the least.
The 'general' bad stuff of JXG - The 'harm' of JXG is if it is internal to the body (i.e., on an organ, or on the spine), or if is in the eyes. In the eyes, it can cause blindness. The specialists will know whether it internal. There will be some obvious symptons. In the eyes, you'll see discolorations in the cornea (think of an Etch-a-Sketch).
So, please keep your spirits up. If I could wish the JXG gone tomorrow, I would. I don't recommend surgery, as that might cause more harm than good (scarring), but that's a decision you have to make yourself. Everything I have read says it will disappear on it's own sometime between one year and five years old. We're hoping that it goes away long before then. I know it's hard to hear that there's something wrong with your beautiful baby (and she's a cutie!). Doctors always give the worst case scenario, which tends to be upsetting for us regular people (after all, they have to protect themselves).
Feel free to write back if you have other questions. I'd be happy to share a couple photos so you can see what it looked like, and what it looks like now.
Thank you so much for all of the information. It made me feel a whole lot better! I've done a lot more reading and I feel that surgery is really not the choice we will make. I have made an appointment with a pediatric dermatolgoist (why we weren't referred to one in the first place I don't know!) so that I can get a second opinion.
When they excised your daughter's JXG, was it all removed? Did that cause the other ones to come up around her neck and nose?
In most of the articles that I have read, they make it sound like that once it disappears it will not return. Is that what doctors have told you or have they told you differently?
I would like to see some photos because I'm just curious to see how it might start looking once it starts to go away.
Thank you very much for all of the information you gave me!
I'm just seeing your post this morning. Drop me an email at gotmaps@gmail.com, and I will send you a couple of pictures so you can see where she was, and where she is today.
The pediatric dermatologist is the first place you should go, so I'm glad you're headed there. They're really the best.
When they excised the initial JXG, they did it to confirm the diagnosis (actually, they didn't even know what it was at the time). She only had one at the time. Once it was removed, they confirmed JXG, but then lots of smaller ones popped up (which have continued to this day). I don't know if it's common to happen that way, or if it was inevitable that she'd have lots of little ones including the big one.
I think, because there was a big one, and that was gone, the little ones popped up instead. I don't think removing the first one caused the ones on her nose, though. I think that was completely separate.
Everything I've read, and every time I've talked to the doctors, they've all agreed that 'someday' it will 'disappear'. Sometime between one year old and five years old. It will just gradually go away, and shouldn't come back.
A couple months ago, we took her to a pediatric dermatologist (having been originally referred to just a 'regular' dermatologist). They wanted to get blood work done, just to double check and make sure her labs were normal. We took her to the first lab, and they couldn't find a vain, so we didn't do the lab work. They wanted us to go to a different lab, but, with her JXG not worsening (and seemingly, getting slightly better), we decided not to get the blood work done.
We actually go back to the pediatric dermatologist this afternoon, and I'm sure she's going to yell at us for not getting the blood work done, but I don't want to subject my daughter to that, and we feel much more confident that everything is progressing normally. Yes, I'd love the JXG to be gone today, but it will disappear on it's own, and hopefully soon.
I'm glad to help. There's not a ton of information out there, especially in layman's terms, and I'm happy to share. Your story touched me, and I wanted to let you know our experience. While we're not thrilled with our pediatrician, she at least could say 'I don't know it is, go see a dermatologist', so that we didn't get upset. (That was the part of your story that upset me the most).
Please drop me an email, and I will send along a couple of pictures.
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