View Full Version : I'm Really Worried

05-03-2007, 04:52 PM
My 13 year old grandaughter was diagnosed with Lupus this past Mon..

She has been having pain in all of her joints, nausea, vertigo and fatigue.
She will be going to Riley Hospital in Indianapolis on June 19. I don't know exactly what kinds of tests will be done and neither does my daughter.

Could someone give me some detailed information about Lupus? I've done a lot of searches and have read about it but I still don't really understand what can happen to anyone who has it. Does it usually affect the vital body organ's?

Any info would be greatly appreciated.

Thank you very much.

05-03-2007, 05:36 PM
welcome to the board beverly! I am sorry to hear about your granddaughter, her symptoms sound just like mine. I have been diagnosed officially for a year, but I have had lupus for 6 to 7 years. I am 26, so I understand how maddening it can be for a young person. The thing with lupus is that it affects everyone so differently, my lupus can even change month to month. some months my big stuggle is vertigo, while other months my vertigo can be pretty good, my my joints ache, etc. I would reccommend that your granddaughter keep a daily journal of her symptoms, lots of times this will allow you to see patterns in her lupus. She'll discover very soon (if not already) that she'll want to eliminate as much stress as possible from her life. You asked about your vital organs...yes your vital oragans can be affected by Lupus. I am very blessed to have a great doctor who keeps on top of eveything for me and explains everything really well to me. I started seeing doctors when I was 13 for health problems (who knows it actually probably was lupus...my stupid dr at the time said it was puberty and growing pains,) anyways I hope that your granddaughter finds a dr she feels comfortable with and one who can talk to her on her level. Your entire family is in my thoughts and prayers, but remember lupus isn't a death sentance by any means. I have learned alot though all of this and it really has made me a stronger person. Let me know if there is anything I can do for you! Best wishes!..... Ruth

05-04-2007, 10:33 AM
hi ms beverly and welcome to our space! im sorry to hear about your granddaughter and i know its really scary for you and of course her, she's young.

everything ms. ruth said is right. i have major organ involvment - heart, lung, and now brain (called CNS-SLE), and am doing just fine. your girl will hae her ups and downs, and like ruth said, keeping a journal can be critical in helping her understand what effects her, and it could really help keep her peace of mind. we have a great young lady 9a teen too) on the board, "ilovehistory', who would be great tospeak with too, hopefully she'll see your post.

"....exactly what kinds of tests will be done and neither does my daughter.

Could someone give me some detailed information about Lupus? I've done a lot of searches and have read about it but I still don't really understand what can happen to anyone who has it. Does it usually affect the vital body organ's? "


as i think ms. jody said, it really does effect everyone in such vastly differnet ways. however, many things are the same - the fatigue, the pain sometimes, and definately the frustration at times. unfortunately ms beverly, lupus is a serious and (can be) debilitating illness, and it can come with all that that means. it ranges from severe and life threatening to quite mild. it can mean lots of medication, lots of regurlar medical tests and doctors visits. it can also mean an overlap wit other auto immune related diseases. it does means always being vigilant because your immune system has gone haywire, so you have to know your body and and what could be triggers for you, like sunlight for many (the UVA rays..), or cold damp weather (like for me). you have good days and some that arent as good. honestly, thre are days when you feel just awful-no way around it ms. beverly. but, thre are days when you feel like you can conquer the world too!!

again, however, for many of us, it doesnt really get too bad. they may have a few ups and downs, but overall, the lupus is well controlled with minimal amounts of medication.

there are no real definitive tests that say 'aha, you have lupus'. if you havent already, go to teh lupus foundation of america (LFA) www.lupus.org and go to 'diagnosis and treatment http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutdiagnosis.aspx?articleid=81&zoneid=15
and it will give you lots of info on the 10 or 11 criteria or so that is used in conjuction with the 'ANA" blood test.

i dont know if im rambling on and on, so please forgive me if i am. im just wanting to cover what i can that i know for you and hopefully not scare the begeezes out of you because i know you must already be. i remember how it was for me - i have a 5 yr old who had just turned 2 at the time and a frantic husband (mine is/was pretty bad and is only just now getting under control). just know that it will be ok ms. beverly. ask lots of questions, follow your gut, even if your unsure if it. that feeling is there for a reason! :lol:

as for me, i have siezures, tremors, not so severe now short term memory loss and speech and mobility issues ( walk with a cane and walker) after having a siezure and falling down the stairs this past october. as i think i said before, ihave heart and lund invlolvement along with the usual joint and muscle issues. please dont use me as the rule!! alot of what i'm going thru is temporary eventhough it all is lupus an vasculitis (an overlap disease for me) related.

by far i am probably the least experienced here and am not the best at bein eloquent like our friends browneyed girl and marycain. but i do want to say again that it really will be ok. i hope this helps ms beverly.

be well :wink:

05-04-2007, 10:39 AM
Don't forget Saysusie!! :)

05-04-2007, 01:25 PM
ooppss! yikes, thanks, of course!! how could i forget my fellow ladyug mommy!!! sorry saysusie!!! :oops: but really, my point was not to single anyone out, but to make not of just how wonderfully well spoken everyone else here is!!

05-05-2007, 09:43 AM
Hi, Beverly, and welcome. I'm sorry about your granddaughter, and understand how concerned you must be for her. Riley is an excellent hospital with some excellent doctors.

As others have explained, lupus is an autoimmune disease that causes the body's immune system to go haywire, and start attacking the body's own tissues as though they were foreign bodies like viruses or bacteria. Lupus symptoms often appear during the teenage years, and some doctors think the hormones produced during puberty may be one reason. Lupus most often affects women, but men can be affected too. No one knows exactly what causes lupus, but it appears to be a combination of genetic and environmental factors.

The immune system produces specialized proteins called "antibodies" as part of its normal function. In healthy people, these antibodies attach themselves to foreign things in the body, like viruses, microrganisms, and toxins and attack them. In lupus and other autoimmune diseases, the immune system starts to produce "autoantibodies" - antibodies which attack the body's own healthy cells and tissues, and starts to attack them. The effects can range from symptoms like skin rashes and fatigue to fever, joint pain, or organ damage. Everyone who has lupus will experience the disease differently, and have a different pattern of symptoms. The disease can also change, so the patient might have joint pain one month, and fever and a skin rash the next. The changing symptoms can make lupus very hard to diagnose, especially in children, so it is good that your grandaughter can start treatment early, and hopefully prevent the disease from causing any significant damage.

I imagine that her doctors in the hospital will want to do tests to check for the extent of the disease, and determine whether any organs are involved. This may involve tests of her blood and urine, x-rays of her joints, specialized tests like MRIs and CT scans, and possibly biopsies. If you don't understand the reason for a test, or the results, don't be afraid to ask the doctor to explain it in plain English instead of medical jargon. Many hospitals have child life specialists available to explain tests to teens and children so that they don't become too upset and nervous. If your grandaughter is upset about going to the hospital, you may want to talk to her doctor about these services.

Some of these tests can be uncomfortable or scary, so when the doctors schedule a test, ask upfront what your granddaughter can expect, and if she will be given medication for pain or anxiety if necessary. Even routine things like blood draws can be painful for some children, so it's important to reduce pain as much as possible. Stress can make lupus symptoms worse, so you want to focus on keeping your grandaughter as calm and pain free as you can. I know it's hard to do when you are frightened yourself, but it's important for your granddaughter.

We don't want to overwhelm you with more information than you can process. Once you've had a chance to catch your breath, and think of more questions, please feel free to ask them. I will be thinking of your grandaughter, and hoping everything goes well.