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New 2 lupus with 9-year old daughter

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Posted 9/17/2008 10:18 PM (GMT 0)
Hello Everyone!

My daughter was diagnosed with Lupus the 1st week of August.  We went in for a rash that she had had for about 2 weeks.  At this point we have been diagnosed by our peditrician who referred us to the rheumatologist who confirmed the diagnoses. 

We have now seen two rheumatologists we are sticking with the 2nd one. 

My daughter's only symptom has been the rash.  She has since been put on predisone and plaquenil which has done wonders with the rash on her face.

Her bloodwork came back positive for the anti-sm, anti RNP, and anti-ds DNA and anti-ss DNA.  Uranalysis came back perfect and blood work came back perfect except for all the positives with the antigens.  Complement 3 was low.

Sorry for rambling BUT MY QUESTIONS IS ... the 1st rheumatologist did not act concerned with any of the test except saying that she definitely had LUPUS. But the 2nd rheumatologist talked more about the anti-ds DNA saying that made her more prone to kidney involvement!!  MY BRAIN IS GOING WHAT !  In the doctors office I couldn't even think but when I asked what exactly was he trying to tell me. He stated that it did not mean that she would have kidney issues she was just more prone to it then someone who did not have the antigen against the ds-DNA.

Could someone please help me digest this.  I have gone through so many emotions. One second I think she has a rash, then I find out it is Lupus, which I have now clue what that is, then after lots of reading, in my brain I am like just let it be the discoid lupus so it will not have major organ involvement.

Then I find out no she has SLE!   

then I process that then I am like please don't let it mess with her kidneys. And I feel like at the doctor's appointment that he  KINDA said it could possbilly lead that way because of the positive anti-ds dna BUT KINDA without saying that.

If that makes sense because he was like she might and then she might not. It is so variable!!! But I walked out of there a lot more nervous then when I went in.

Thanks for any help with this,

Melissa

Posted 9/18/2008 12:08 AM (GMT 0)
Hi Melissa, Welcome to the forum. I'm so sorry you are going thru this with your daughter. It must be horibly overwhelming. The first thing most of need to do is to go thru a grieving process. It sounds like you are doing that right now. Please know that your emotional roller coaster IS normal and that you will stabalize after you have had a chance to digest everying. I do have one question. Why is her doctor using prednisone if her only symptom is a rash. I understand the plaquenil as that will eventually build in her body and hopefully help keep her need for meds to a minium. But I would find out why they are using pred if there is nothing else wrong. The best thing you can do for your daughter is . . . exactly what you are doing. Getting a crash course in Lupus, the symptoms, the meds, etc. Problem is . . . lupus is different in each of us. So we each have a different path. But most of us do take plaquenil. It is the first med the docs use. . . and most of us will be taking it the rest of our lives. It has the most benefit with the least side affects, as long as you have her eyes checked regularly with an opthalmologist who will do a visual field and other tests necessary to make sure her eyes remain healthy. There is a tiny percentage of people who have to stop taking plaq due to eye issues. But the eye issues generally go away when plaq is stopped. There are some links at the end of my signature that you will find helpful. Don't be afraid to ask questions of the doctors. Glad you found us!! Blessings!
Posted 9/18/2008 2:21 AM (GMT 0)

Thanks for your response.

I do not know why she is on predinsone.  Weird. I am so busy trying to stay on top of everything that is occuring with her. I am so worried that someone will drop the ball and I do not want to look back and say I wish I had done this.

And here I have allowed her to be put on pedinsone and I do not know why. I never asked I assumed the doctor knew what he was doing I never questioned. I thank you for questioning I am going to write that down as my main question to always ask.

She has the face rash, hair loss had just started prior to being prescribed the medicine and the positive blood work.

She does not have a fever, blood pressure great, no joint pain and no signs of being tired. I do know that she had the rash on her cheeks when we first went to the rheumatoloist and then when we went back 3 weeks later it was considerably larger on her cheeks and she had it on her forehead, chin and ears. And this is with her daily dousing of sunscreen.  He was hoping that the rash would have gone away from the 1st and 2nd appointment.

He put her on 40 mg predinsone and 200 mg plaquenil.  Does this seem like a high dose of predinsone?

I am now taking her to another rheumatologist that is in the process of lowering her predinsone by Halloween she will be taking 20 mg predinsone every other day. 

Thanks again for responding.

Melissa

Posted 9/18/2008 5:51 PM (GMT 0)
Hi Melissa, It 'may' be a very appropriate dose. But we don't know 'why' he's giving it. He may have been trying to interrupt a potential flare. He may have seen some numbers in some blood work that indicated a progression in some organ. But it doesn't sound like he did. Suggestion: Keep a copy of EVERY lab report. You have a right to a copy of each test result and each x-ray, scan, and interpretation of the scans, biopsy reports etc. Right now you are early enough in the game to go back and collect them. Keep a file with all these reports. Even the negative results will be important because if you end up seeing several different specialists, you will have your folder handy to show the progression of the disease. This is extremely helpful to the doctors . . . and I'm very sorry to have to share this . . . but it is often very difficult to get this paperwork later. Doctors are, in general, very lax about getting this info copied and shared. You will save her from repeated testing, time waiting for results and you will move forward w/o so much confusion, if you keep all this paperwork handy. It will become quite a file. But you can start a new one each year and then eventually carry them in an accordion folder. You might feel silly carrying along all this 'stuff' . . . . but do take it to EACH appointment because you never know when you will need to refer to it. Another suggestion: for your sanity in dealing with insurance and payment to doctors: Pick up a little check-book sized yearly calendar and use it ONLY for your daughter's medical appointments. Jot down every appointment, mark every date that you do bloodwork, mark the date you start each med and the dates you taper. It will become a great tool because you will lose your mind trying to piece it all together. The bills sometimes come in months after the appointments and it all becomes one large blur. This little book will also come in handy during your doctor visits because you can readily see when she started meds and when she had certain tests etc. Also start keeping a business card from each doctor. I keep a little wallet insert with the calendar that has all the doc cards in it. It helps keep you from becoming overwhelmed trying to refer to these doctors next year when you are talking to yet another doc. You will find a way to get really organized with this info. Again . . . I'm NOT saying that she shouldn't be taking the prednisone. I'm just wondering why they are giving it. We are always weighing out the benefit vs. risk and so we ask the doctor: Why am I taking this med? What is the benefit? How long will I be taking it? What if I don't take it? Are there any alternatives? Hang in there Melissa. I know this can all be overwhelming. But you are doing a great job looking into all your options. Make sure and post any questions because the members here are extremely helpful. Blessings!
Posted 9/18/2008 6:07 PM (GMT 0)
Hello Melissa:I just want to welcome to the forum, I'm sorry to here about your daughter. Rosie always has great advice for people. I don't have much to say just try to stay calm ask all the question you can think of.. Take care. Debbie
Posted 9/18/2008 10:56 PM (GMT 0)
Hi Melissa,

 

I want to welcome you to the forum as well.  Im so sorry this is happening to your little girl.  Very traumatic for everyone in the family....

 

I wondered the exact same thing.  Why is she on prednisone if there aren't any other symptoms or problems?  My first reaction was - is the rheumy not telling you everything that is going on?  Is there some other organ or blood involvement that they forgot to mention to you?  I would not hesitate for one more second.  Call the rheumy and ask.  You have to be your daughter's second doctor.  She's not old enough to ask these important questions and be proactive.  Make the call, ask to have all her blood work and results faxed or emailed to you. Rosie mentioned that already, but it's really important.

 

I have the anti ds-DNA.  I've only had one kidney infection and maybe 2 or 3 small bladder infections this entire decade.  My kidneys work really well, and have never been an issue. In fact, of all my organs, my kidneys seem to be the troopers!!  So don't over react to this blood test result.  If the problems arise, then deal with them at that time.  If the problems aren't there, don't worry about it.  Okay! ((((hugs)))

 

Rosie's list of suggestions is perfect. (as always tongue ).  I don't have much more to add to what she has mentioned.  Just find out what the prednisone is for.  That's a huge dose for someone with no organ or blood involvement. Even 20mg every other day is a lot. 

 

Keep us posted okay,

 

Ginny

Posted 9/18/2008 11:32 PM (GMT 0)
Hi Melissa,

Another welcome from another lupie! I'm glad you found us and I'm especially happy that you're asking questions. The reason folks have been asking you about prednisone is that we're painfully aware of the side effects of prednisone and would personally never take it unless we were convinced that (a) we really needed it and (b) we were on the lowest dosage that would help us.

It sounds like your daughter has a doctor who's taking her health seriously and that's a good thing. I hope he has caught her lupus before it progresses and worsens. I wish you both the best. And come here often. This is a great place to come, not only for questions, but also to vent, scream, and cry.

Hang in there,

Pat
Posted 9/19/2008 2:42 PM (GMT 0)
Hi Melissa. The other members have given you such great information, I don't have a lot to add, I just wanted to welcome you. I'm sorry hear about your daughter having lupus, but it seems like the docs caught it early which is good. I agree about finding out why she is on prednisone - it could be because her labs indicate that her lupus seems pretty active right now. I have read that low C3 means that lupus is active. In addition to my own lupus I have a 10yr old son with some type of autoimmune illness that is affecting his joints. There aren't any pediatric rheumies near us, so we have been struggling. We are traveling 3 hours in a few weeks to see a new pediatric rheumy. It's scary when your kids are going through this. I'm glad you joined us. Please ask any questions you have because I know all of this can be overwhelming.
Posted 9/24/2008 3:10 AM (GMT 0)
Hello and I hope the other posts have helped...they help me daily!

Just courious, where are you located? If you have local support groups, you may want to go without your daughter at first. I found it to be a very mixed situation. Some of the people are empowered and others are not. Some are very ill, some are feeling great.

I have a 7 yr old daughter. She has some very amusing ways of sharing with people my illness. But even for her, it has been hard to accept. This has not been a grieve and move on kinda thing for either of us. Just as soon as I feel empowered and motivated I fall on my face and feel like Im starting over again. And Im ok with that, its part of getting used to the new me!

I have found that being straight up with my daughter has been more effective then trying to sugar coat and down play things. They are smart!

I guess I really just want to say, I hope you are doing well and take one day at a time. Document everything, find a dooctor you believe in, do what they say! It is a lifestyle change, but its worth it!
Posted 11/14/2008 7:58 AM (GMT 0)
Bumping this up for Melissa. Blessings!
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