I talk to the trees Posted January 30, 2013 Share Posted January 30, 2013 Dd has an appointment with the pediatric rheumatologist coming up, and I want to be sure that I ask all the right questions, give all the important information, etc...We're looking at the possibility of autoimmune issues (her pediatrician suspects SLE), and although I am trying to play it cool for dd's sake, I am beside myself with worry. What questions should I ask? What should I expect from the doctor? Are there specific tests that I should request? I want to be certain that dd gets the care/treatment she needs, but I don't want to put her through unnecessary tests or treatments. And if you all could spare some prayers and good thoughts for dd (and me-I'm a nervous wreck), they would be very much appreciated. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted January 30, 2013 Share Posted January 30, 2013 Most rheumatology panels are pretty standard, so I wouldn't worry about what labs to ask for. Have you seen the SLE checklist? If you have photos of a rash that comes and goes (and isn't there at the appointment), I'd bring that in. FWIW, if they suggest taking Plaquenil....It's been a good drug to me. The eye side effects they mention are scary, but very easily detectable early on with the yearly eye exam and you can discontinue before the damage is serious. They have a new scan they can do of the retina which is more reliable than the old field of vision test. If she goes onto plaquenil, I'd recommend finding an opthamologist that has the computer to do the scan. :) Quote Link to comment Share on other sites More sharing options...
Arcadia Posted January 30, 2013 Share Posted January 30, 2013 If it is a referral, the tests would be standard. I was refered to a pediatric rheumatologist when I was 16 for suspected juvenile arthritis so the tests done might be different. The blood test results were not same day and waiting for the results was more scary than taking the tests (in my case). If you have already read up on SLE and have questions, ask the pediatric rheumatologist during the visit. There might be blood tests that are unnecessary but done to rule out the possibility. I was tested for juvenile diabetes at the same time. Quote Link to comment Share on other sites More sharing options...
jillian Posted January 30, 2013 Share Posted January 30, 2013 They will have a pretty good idea of tests. I'm not familiar with SLE but my dd has Systemic Juvenile Arthritis. Make very good friends with the nurses and the front desk, chat a bit when you check out and if they are quick compliment them. Our best ally has been the nurse that works with our ped. rheum. Also ask about what their emergency procedures are (do they have a rheumatologist on call after hours)? What are their policies regarding treatment? Is it go to the most expensive intervention first or do they try other things before going to expensive meds? (My dd started with Prednisone and Naproxen as well as supplemental things like Os-Cal and Zantac to help with tummy issues. Only after she continued having problems did we move on to a very expensive injection). What are their policies regarding phone calls? (i.e. do they let you call and they get back same day or do they require appointments for every little thing). Ask for a print out of every test they are running so you can research them. Also ask for an information packet for her diagnosis, they should have one. Also ask about any support groups if it is a life altering diagnosis Quote Link to comment Share on other sites More sharing options...
JudoMom Posted January 31, 2013 Share Posted January 31, 2013 I would suggest writing down all of your questions. It's so easy to forget specific questions when you're at the appointment. I would also start a health journal for your dd. Write down any symptoms, when they occur, etc. If she has rashes or swollen and red joints, take pictures. Keep track of her energy level. I would also suggest that you start getting copies of all of her labwork and tests for your own records. While you might not be able to interpret all the results, you can tell if something big changes. It's also nice if you get shuffled from specialist to specialist. Take copies of her health journal and labwork to whatever doctor you see. My son has JRA and I have Autoimmune Hepatitis, and our doctors appreciate having these things on hand. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
besroma Posted January 31, 2013 Share Posted January 31, 2013 Praying for you and your dd. :grouphug: Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 31, 2013 Share Posted January 31, 2013 At our visit to the ped. rheumy, our dd had between seven and nine blood tests for different things, including a lot of antibody tests. She'd been tested a lot before by other specialists, so these were very specific for automimmune diseases like lupus. Quote Link to comment Share on other sites More sharing options...
I talk to the trees Posted January 31, 2013 Author Share Posted January 31, 2013 Thank you for the replies. I have a notebook with all of this written down so that my stressed-out, hormone-fogged brain doesn't forget anything! Now with the lake-effect snow warnings for our region, we have had to delay the appointment for yet another week. I just want to get dd in and get her evaluated! I'm so, so tired of fighting the weather in this stupid place. We were idiots to ever move here in the first place, and now we are stuck here, 600 miles away from family, with no support whatsoever. I just want to curl up in a ball and cry. (Sorry. Okay. Vent over. Breathe in. Breathe out.) Someone please tell me it will be okay, pretty please? Quote Link to comment Share on other sites More sharing options...
JudoMom Posted January 31, 2013 Share Posted January 31, 2013 Thank you for the replies. I have a notebook with all of this written down so that my stressed-out, hormone-fogged brain doesn't forget anything! Now with the lake-effect snow warnings for our region, we have had to delay the appointment for yet another week. I just want to get dd in and get her evaluated! I'm so, so tired of fighting the weather in this stupid place. We were idiots to ever move here in the first place, and now we are stuck here, 600 miles away from family, with no support whatsoever. I just want to curl up in a ball and cry. (Sorry. Okay. Vent over. Breathe in. Breathe out.) Someone please tell me it will be okay, pretty please? It will be okay. How old is your dd? Quote Link to comment Share on other sites More sharing options...
I talk to the trees Posted January 31, 2013 Author Share Posted January 31, 2013 It will be okay. How old is your dd? She's 12. No child should have to deal with this. Why couldn't it be me instead? Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted January 31, 2013 Share Posted January 31, 2013 I have had one here who suffered from a bout of Reactive Arthritis, which did go away. If she is put on plaquenil, I am another who has been on that drug for almost 16 years with no vision problems. In fact, this year, my opthalmologist said I can now go down to once a year visits. Quote Link to comment Share on other sites More sharing options...
JudoMom Posted January 31, 2013 Share Posted January 31, 2013 She's 12. No child should have to deal with this. Why couldn't it be me instead? It is so hard to watch your child suffer. My ds10's JRA is mostly in remission, with only occasional joint/back pain, but his headaches and migraines have ratcheted up over the past 6 months. It breaks my heart. I hope the rheumatologist is able to help your dd find relief. I'm sorry, and I'll be watching for an update. I've always found the not-knowing to be the worst part; once we have a diagnosis, we can make a plan. Quote Link to comment Share on other sites More sharing options...
Green Vixen Posted February 1, 2013 Share Posted February 1, 2013 Hi Stardustfairy, I'm sorry your daughter is suffering right now, I hope they are able to get a diagnosis and get things under control for her! What are her symptoms? Do you think she has SLE? What are her biggest problems right now and which ones do you want them to focus on? For example, if mouth sores are her biggest problem make sure they address that and don't get bogged down in her other symptoms. There are usually a couple that are the worst for living with but aren't always the doctors biggest concern. They will probably do a lot of bloodwork on her, I'm not sure if she's squemish so be prepared. Here are some of the more common lab tests they may do if you want to research them before you go in: -ACL - IGM, IGG, IGA -ANA Reflux, ANA A, ANA B (there seem to be lots of different ANA tests) -CBC -Celiac Panel -C3, C4 -C-Reactive Protein (CRP) -ESR -Immunoglobin E -RF -Sed Rate -Vit D Prepare yourself for them not knowing what is wrong with your daughter. You prepare yourself for a certain diagnosis but you aren't always prepared for them say "I don't know". Don't let the doctor rush you through the appointment. Take you questions and write down the answers (you may forget with all the new info you'll be getting). Ask for copies of all lab work and procedures so you have a copy. Ask how long it will take to get the results back, will they call you only if they are abnormal or even if they are normal? Who should you call if you have any questions? Fortunately my children are healthy so far but I've dealt with chronic health problems my entire life. I can't imagine how scared you are right now, I know I would be a mess. Hang in there! :grouphug: Marisa Quote Link to comment Share on other sites More sharing options...
jillian Posted February 1, 2013 Share Posted February 1, 2013 Oh and something I always do with dd's Ped. Rheum is to always request a copy of the lab results. If I can't get down to get them (don't have a home phone for a fax machine though my all-in-one has a fax built in) I get it every time we go (Every 3 months) from the last time. They have no problem printing it out. I also call if I don't hear from them in a couple weeks after getting blood work Quote Link to comment Share on other sites More sharing options...
I talk to the trees Posted February 1, 2013 Author Share Posted February 1, 2013 Thanks to everyone for the replies! I have my list of questions for the Dr., and I'll be sure to ask for a copy of any labs/test results. Now, if I can just convince mother nature to cooperate so that we can actually make it to the appointment next week, we'll be set. Honestly, if I never saw another flake of snow in my life, it would be just fine with me! Quote Link to comment Share on other sites More sharing options...
jillian Posted February 1, 2013 Share Posted February 1, 2013 You could move to Charleston, SC we have an amazing rheum here at MUSC lol Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.