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.
The Blister's are actually from discoid Lupus...which causes the trouble for the skin but secondary is just as bad and like your son...i had the steriod creams which worked great but my skin won't work with them now but my DNA would work with the Dapsone and i get them up my arms i did a blog showing my arm best i could hands/neck/face and what kicks them off more than anything is heat rays from the sun, just sitting in shade will do it, i'm banned with my dermo not to go outside and sitting in the shade after 10mins triggers them and even though your sons inside just humidity heat in the air can cause it.
If it's warm where you are try and keep a fan going by him to keep his skin cool.
My blisters do come in the same spots but i have the odd occassion where they'll break out on my feet and then it's using steriod plasters to clear those up, incase of ulceration. The crying could be coming from being fedup with it because it's alot for a child but like i said Lupus can cause depression, it gave me manic depression from a teenager so just watch your son, as depression is like a ping pong ball in and out of your system like mad.
My first symptoms started at 5yrs of age i was always freezing cold and my eyes dark underneath, so my mom got me checked out for anaemia and apparentley i was ok and i went for years like that even in the summer and when i was 14yrs old i started having autisum and i do things i had'nt got a clue i'd done and then at 18yrs old depression kicked in bad and 2 forms of seizures then strokes besides other issues, the coldness was the raynauds and within the last 3yrs the lupus is strong in my blood besides the sjogrens disease.
See your sons young and is already getting fedup with it and seeing the doctor and i've had this lot going on for 25yrs from 18
till now at 42 and it's never ending appointments it just gets you down.
Hugszzzzz to you both and i don't mind you asking me anything, that's what we're all here for to give full love and support.
I have never even heard of a nickel diet...I guess I never thought about food having nickel in it. I wonder if that could be part of my stomach issues? Because Im REALLY allergic to nickel. If I even wear jeans the back part of the button breaks the whole bottom half of my stomach out in hives. Im going to look that up. I wonder why no ones mentioned it to me before =(
Im glad your son seems to be doing better on the Mobic! I hope it continues to work and you dont have to switch to another medicine.
Ritz...i've found these pieces about nickel and lupus.
Ritzbit- My sons derm gave him this long 2 page list of rules/foods for the nickel free diet. I have looked online for the past hour trying to find something similar for you, and I'm having a hard time. I have found a few things, but nothing like that paper the dr. gave us. I did find a list of foods to avoid that were on the list:
Food cooked with or in nickel-containing utensils
Whole meal flour
Nickel is also found in medications, vitamins and herbal remedies.
Ohhh, forgot to add that my son is having a side effect <?> from the mobic. He is sweating a lot during the day, and nightsweats also. He will be sweaty, just from sitting still, his hair will be soaked through at times. If he does any activity, then he's sweating horribly. I'm glad our appointment is next Thurs. so I can ask the doctor about it because it is worrying me.
I am so glad that you are going to the doctor this week! You may want to write down all the things you want to talk to the doctor about because, if you are like me, you will forget half of them when you get there!
Please keep us posted!
Welcome to WHL!
So sorry I missed this thread initially. You've gotten a lot of great advice for your little guy. I would also research Dermatomyositis due to his muscular complaints and rash. It is an autoimmune disease as well. The Muscular Dystrophy Association has info on their website about it and associated conditions.
I hope you get some answers. Sounds like your son also needs a good neuro-but that's simply my opinion. I wish you all the best. Having a special needs child, I understand why you're pulling your hair out in frustration.
I get all sweaty all the time too. Its really annoying if nothing else. I have raynauds so my fingers and toes feel like ice cubes all day and the rest of my body will be burning up and sweaty. For me its probably partly because of the steriods Im on. Im so glad your appointment is getting closer! I hope you get more answers when you see the doctor. And thank you for that list! Im sad that my favorite fruit is on there lol I dont eat it very often to begin with though.
I have the same thing. The back of my hair stays soaking well because my body temp is so hot while my feet feel like ice cubes.
Originally Posted by ritzbit
Bonusmom, please let us know what happens at the doctor. I know that worrying about your child is the worst thing thing in the world. I hope you get the answers that you are looking for