ritzbit- Your post was really informative! I'm so sorry that your brother is starting to have symptoms. What you said about him and his bike sounds just like my son...he's super active and on the days he doesn't feel well, he doesn't want to do anything. Also, I'm glad to hear that the mobic is working well for you. I'm hoping it will work as well for my son. We ended up starting it last night, so he's had 2 doses, and so far so good (keeping my fingers crossed). About the children's hospital...when our ped. was talking about referring us to a ped. rheum., he wasn't sure where the closest one was and said we might have to go to ohio, but luckily there was one closer (in TN), although I have heard wonderful things about the children's hospital in ohio, and I always keep it in the back of my mind as a backup if we end up needing them. And also yes, he has been tested for allergies. That was one of the first things they did, and also tried the nickel-free diet. Did you end up having to go on the nickel-free diet? If you did, bless your heart, because it is such a wacky one. Thank you so much for the info and keep me posted about what happens with your brother!
Marla- Every idea helps. I am willing to research anything that comes across my path! They have ruled out all dermatological conditions. As of now, he has had 4 biopsies--1 scrape, 1 puncture, and 2 excisions. That is how we came to finally get an appointment with someone other than a dermatologist. And yes Vanderbilt is a (overall) wonderful hospital. That is where my son's dermatologist he saw for 18 months was. I will admit that out of all of the offices we have been to, they have the most awful staff (in the ped. derm. clinic), and it was @ Vanderbilt, that I had such an awful time with the nurses being rude, and apparently overworked, as they wouldn't return phone calls, didn't want to do pre-auth's for the pharmacy/ins., and didn't want to deal with any paperwork to do with anything. When we transferred to Duke, they still had not sent my son's records, Duke had to contact them multiple times and it took 3 months before they finally sent it all.
Giggle- TYSM for the link and all the info. I am def. going to push the dr. with the b.o. issue, because I think it's definitely worth a look doing a CT, especially considering our kids sound so much alike. I will p.m. you in the next couple of days because I have a couple more questions.
Terry- Thank you! You are like a wealth of info! The blisters you have, have the dr's said they are caused (secondary) by lupus? When you had steroid cream, did it work? We have tried several diff. steroid creams and none worked. And where do you get the blisters, how do the correlate with the lupus, and are the blisters always in the same spot? (Sorry, I know, a ton of questions) Also, I never considered that the crying might be from depression. Usually it's a big sign to me of when he doesn't feel well, because on days he feels okay, he's really active, happy, etc, and on days he doesn't feel well, the littlest things will set him off with tears. Since you were born w/lupus, I was wondering if you would mind telling me what you can remember from when you were small, of what your symptoms were, how you felt, etc. It has been easier the past year to differentiate the different symptoms with my son, because he's getting better at telling, but on the other hand, he still doesn't like to always tell us when he feels bad or something is hurting because he thinks he will have to go to the doctor =-(
I think I finally kept one post on one post, lol. I wanted to pop in and check and let you guys know that he started his mobic last night, and also had it tonight. So far, so good. I did wonder though if anyone knows why you have to drink 8 oz. of water with it? I had read online that you are supposed to and it was also on the bottle label, but I have no idea why, and also can it be flavored water? Anyway, thank you all for continuing to give me so much info, more things to consider and research, and personal stories that help much more than anything I have found.