Lupus in Juveniles
It's late here, but I'm going to try and ask & explain this as logically as possible...
I am not familiar with lupus in juveniles (although my symptoms began when I was in my mid teens-but I don't remember everything at the time, because we knew nothing about lupus or its roughly "specific" symptoms), however what I do remember was the fatigue, joint pain & most of all unexplained nose bleeds (it's kinda hard to forget having your nose cauterized a few dozen times!).
My concern lies in my brother-he has just turned 14 & lives with my husband & I during the week (I homeschool him (his continual illness is what made him fall behind in public school 2years ago), my son & two other boys) over the last few years his ailments have steadily gotten worse. Things that remind me very much of my own. I've tried desperately not to label them as symptoms-but lately I cannot further ignore them. My grandmother passed from lupus complications, and my sister was also just recently diagnosed as well-she is quickly & terrifyingly catching up to my current "level" of activity/affliction.
Within the last year alone, he has begun progressing past fatigue, continually debilitating joint pain, hair loss (in the last few months he's begun balding in the back, while the rest of his hair has thinned dramatically), but moved onto migraines, episodes of syncope, optic nerve swelling, high blood pressure, nose bleeds, chest pain, kidney problems etc.
In the beginning my mother didn't want to hear any of these things-she's a great woman, but has suffered through a tremendous amount throughout the last few years. She kinda shut off once my sister coded multiple times & was in a coma for several months (her & I were present as they resuscitated her (25yo now)it is something that you will never forget). She held it together through the year of rehabilitation (my sister is not, and probably will never be as she was or who she was) but after that need faded somewhat, she constructed a wall. When I had to begin dialysis, she fortified this construct even more. (She lost her mother-lupus-at age 17) and I think something just snapped inside-she began referring to me as Betty (her mothers name) for a time, and was pretty well inconsolable when she was "there".
When my brother collapsed at home on a weekend, she couldn't ignore it anymore-not entirely. And I began scheduling him with all sorts of physicians & specialists (I'm not legally his caretaker & can only do so with his parents--mother & stepfather's--permission). I've taken him far north & south, yet we have no definitive answers, and when I approach the topic of lupus, I get shutdown. They argue with me that he is too young, or that men (ha!) do not get lupus.
It's all a very familiar, and frustrating path. Today, whilst doing school he'd been complaining of how bad his joints ached-and I noticed the pain & the time it took him to write with his pencil. When it comes to education, I'm strict (I used to teach at a private school) and being the caretaker, it means I have to be even more so, because the boys think they can get away with sin with me-I'm not "teacher" I'm mom, friend, confidant etc lol there are moments when any of the boys will milk it for all it's worth. But I'd no sooner went to his desk to help him study for his French quiz & he was mid pronunciation he turned a funny shade of gray & blood began pouring out of his nose. I immediately grabbed tissues & fetched our blood pressure cuff-I was worried it spiked. But it was completely normal & i kept a close eye on him, and finally agreed that he was safe to nap-later he seemed alright.
I know when it comes to children-he's just as much my child as my son, I have cared for him since he was small-we tend to over react & worry. But being with someone & experiencing the situations first hand, you can fully grasp them for what they are. I know with every ounce of my being that something is amiss-the doctors acknowledge there is, but we can't get to the place we get anywhere.
I've begun keeping a journal of his health-to take his appointments (I do this for myself as well-because it's hard to remember everything, let alone keep it straight) but the reason I'm posting here is to seek advice-I know no one can provide me with a definitive answer or solution.
But perhaps some of you can guide me towards the right direction. What are some things I should/can be doing? Tests I should push, specialists I can take him to, symptoms I should watch for or definitely notate? Things such as these-I can't list them all, but hopefully you guys can understand the kinds of things I'm needing. I'm not definitively saying this is lupus, although he is portraying so many of the hallmarks I had, I'm simply hoping to be able to reach that destination of an answer. Some kind of answer. This disease has robbed me of so much, if I can prevent that loss for him i will go to the ends of the earth. He deserves to be able to enjoy his youth, the rest of his life. he counts on me, I can't keep letting him down
I'm so sorry about the situation that you're in. I am fairly new to lupus (almost 3 years). My son was 13 when he was admitted to the hospital in renal failure due to lupus. His symptoms started with fatigue and joint pain and progressively changed over the next few months. Gaining weight without eating was one of the final straws. He spent 7 weeks in the nearest children's hospital. Went through hell while he was there. Now, he is doing GREAT! In remission and feeling good. We didn't have specialists in our local hospital but we were lucky enough to have a few gp's that recognized that things weren't right and sent us on to a bigger hospital. The bigger hospital closer to us doesn't have pediatric specialists that he needed so we had to go 2 hours away from home. I wish I could give you insight on tests that should be done. My son sees a pediatric nephrologist (he has lupus nephritis) and a pediatric rheumatologist. Those are the main ones he sees unless there is something "small", then he goes to his gp (which just retired so we now have to find a new one!). Good luck! I hope you get some much needed answers.
i live 1/2 a world away, and do not know the american system ...
but i would have thought going to a teaching hospital would be a good place to start.
you can ask as a person, not for anyone in particular.
i mean as a sufferer yourself, you can ask about symptoms to look for in family members.
Leahc: thank you for response & I am so sorry your son had to go through so much! I'm glad to hear he is doing better!!! I've taken my brother all over the place for so many of the issues going on...but sadly that's where my frustration lies. He sees a pedi (they see children until 18) but every time a new problem arises, he only hones in on that particular issue & refers us to a specialist to deal with that issue-and then begins the vicious circle -_- the specialist goes over the particular issue, asks us about everything else, tests that particular issue, tell us they think its all related & then our pedi is mandated as our "center control" which doesn't get us anywhere! The others I've tried branching out to-like teaching hospitals such as Rush University (as Steveb mentioned) don't really wanna deal with him without our Pedi's backing because he's "so young"
I think between myself, my sister, my brother & my son-that "too young" is my most HATED response! I wish the fictitious label of age "requirements" for illnesses would be finally abolished! Kids, teens, twenty-something's get sick....and not just with a cold or the flu. When our pedi kept brushing off my son's issues (after practically harassing, they finally figured out he has many severe allergies-one in particular to soy that they kept pushing us into giving him!) it made me want to scream lol it's one of the things so many of us here are familiar with-the methods of pushing that yields results. It shouldn't have to be that way, not for adults or children. "I dont know" shouldn't be accepted as good enough or the end of the line. You feel like saying "If you can't help, then at least give me someone who might be able to" not just give up or take it as a personal blow towards your professional ego. Sorry that was venting lol I truly appreciate any & all help, it's very hard to narrow down the specifics that you have to relay in order to get anywhere-it seems like it's those specifics that gives you that opportunity to snatch up a hallelujah, so long as you guess the right cup!