Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
To start, autoimmune disease seems to affect all the women in my side of the family. My Aunt has Rheumatoid Arthritis, my mother has MS, and I suffer from Idiopathic Intracranial Hypertension. My daughter is 13 years old and she gets migraines, joint pains and aches, fatigue, low grade fevers, low back pain, and some rashes or small bumps on her skin. Additionally, she recently started her menstrual cycle and she is really struggling with it. She had blood work done with a positive ANA result. We are waiting to get in to see a specialist.
She is a dancer, singer and actress....literally....not just as a hobby. I worry that this illness will steal her dreams. Problem is I don't know much about Lupus. What are the symptoms, how has it affected you, what can we expect if she does have it, etc?
I thank you in advance for any assistance you can provide. I worry about her. God bless you all.
MM3
She is a dancer, singer and actress....literally....not just as a hobby. I worry that this illness will steal her dreams. Problem is I don't know much about Lupus. What are the symptoms, how has it affected you, what can we expect if she does have it, etc?
I thank you in advance for any assistance you can provide. I worry about her. God bless you all.
MM3
There are so many things that can be going on with your daughter that its really really hard to say if she has lupus with her symptoms and only a positive ANA. ANA's can be positive for many reasons other than lupus, and the symptoms can also mimic many other heath problems. Viruses, bacterial infections, and other auto immune diseases and mixed connective tissue disease, can all cause positive ANA's and lupus like symptoms so its important not to worry yourself sick until she has all the more specific lupus blood tests done. No doctor will diagnose/treat lupus with just a positive ANA and the symptoms you mentioned because of this reason. Im glad you are taking her to a rheumatologist because they will do these tests on her (CRP, Sed Rate, Rheumatoid Factor, C3/C4, and others). Make sure she has been tested for Epstein barr virus, Lyme disease. and rocky mountain spotted fever if her Lupus panel comes back negative.
Because so many different things (like the viruses I mentioned) can cause her to be sick, try not to focus on lupus until you know for sure. It will only stress both of you out when you read or research about it. Shes too young to worry about something that she may not even have with the way she is so active in her life. Its not common for 13 year olds to get lupus so she does have that on her side.
I went to theatrical jr. high and high school and was also an actress, singer, dancer. That was my life. I got very sick with Epstein bar virus in 10th grade( but always had poor health) and I was so sick that I missed out on everything that I loved for a full year.....In and out of school. I had no life and it STUNK. So, I totally understand where your daughter and your fears are coming from. I cant do anything like i use to be able to do but you learn to live with it. She would learn her limits and though difficult, figure out what she is capable of doing. Its not always what we want to do, but if it keeps us from feeling sick and bed ridden, most of us make those changes.
Keep us posted on what happens and know that we are here for you to answer any questions. I do suggest not googling though about lupus since it can cause more harm then good even when you have been diagnosed with it. It can freak you out and give out false information. Your in my thoughts and prayers and if your daughter ever wants to message someone who was sick since she was a child she can email me. I can give her tons of support, encouragement and compassion. Been in her shoes.
Hugs
Melissa
As a mother of a child suffering from autoimmune disease I can totally relate with the heart ache you are feeling. My son, now 21 and a senior in college has been struggling with health issues for many years, I had him tested the first time when he was around 10 because I knew what he was dealing with was not normal for a child his age. It was not until this year I finally got smart and took him to a rheumatologist, I feel horrible I didn't do this years ago. Now that the proper testing has been done, he has tested positive for RA and what appears to be lupus, our doctor is not "labeling" him at this time because as Melissa stated autoimmune diseases can mimic one another and he wants to be certain of what it is before he goes that far, but has put him on plaquenil to see if it will help with his symptoms. The main thing is to help relieve the pain, not so much "labeling" if you get what I mean. Many times individuals are misdiagnosed and it comes back to haunt them in the world of medical madness. I appreciate and respect that our doctor is not doing that.
Autoimmune disease runs on both my mother and fathers sides of the family. My father had chrohns and RA, several of mother's aunts were literally crippled with RA, but as a young adult I never thought I could be afflected and worse yet pass it on to my children.
The Lupus Foundation of America is a wonderful website for learning the signs and symptoms of lupus and of course educate you should your child be diagnosed with lupus.
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2231&zoneid=52
As you know there is a lot of information online, that can be good and bad, not everything you read online is accurate and many times we can get worked up for no good reason. I urge you to use reliable websites and rely on your doctor for solid advice. He/she will be your best resource when it comes to your treating your child.
I wish you and your daughter the best and hope you find out what is causing her to feel so poorly soon. And remember whatever the diagnosis she can live a normal life, she will just have to adjust things to her needs, it's all doable.
Hugs,
Mel
Sometimes these things turn out to be something not terrible. I too have a family full of true autoimmune things--both my parents, my siblings (Type I diabetes, Raynauds, lupus, Stills, Aplastic Anemia) and my ex-husbands mother too (Ankylosing Spondilitis). My daughter (who is the same age as yours) was having some lupus like symptoms such as joint pain, headaches, etc. I was scared to death. So I understand where you are coming from. Her pediatrician didn't even do bloodwork; he felt that if the specialist wanted to do bloodwork, then it would all be done at the same time. And given my family history, she probably has a positive ANA so what was the use?
I took her to a pediatric rheumy who asked more questions, moved her joints around and found that her pain was due to her activities (in your case, your daughter is a dancer) and felt that her joint pain was due to hyperextensive syndrome, i.e., she's double-jointed like I am. The rest of the things come and go in kids. Your daughter dances; is it possible that her back pain and achiness are from her dancing?
I think that people read the symptoms of lupus and AI diseases and don't really understand them. I am going to explain these things to you not to diagnose your daughter one way or the other, but so that you understand that what you see as likely may not be so likely at all.
First let me start with the familiar connection. IIH or pseudotumor cerebri as it used to be called is NOT autoimmune. And MS has not been established to be genetic. Lupus has a very low pass rate when a MOTHER has lupus, only 10% to a daughter, less to a son. And your aunt is too far off in the family tree to be relevant so you don't really have a family history of autoimmune disease as it relates to your daughter, okay? So take the family connection off the table.
Next, lets go to Low grade fever. This is a deceptive term since many people run a LGF as their natural temp; it's only a fever of 100 or higher that's significant. How high is your daughter's fever? LGF is NOT specific for lupus either. You might want to read the 11 criteria for diagnosis to understand what symptoms ARE specific to lupus. You can find it at the American College of Rheumatology website.
Similarly, except for the positive ANA, none of your symptoms listed are specific for lupus. Rashes, fevers, fatigue, headaches, migraines, achy joints can all be part of about 25 different AI diseases and a number of infectious diseases. It's possible that your daughter has lupus, but no decent rheumy is going to diagnose her with lupus based on what's going on right now because her current symptoms are NOT SPECIFIC FOR LUPUS. But lupus is the first stop for most people because, I guess, our lobby is doing its job and getting the word out. Bencet's Disease doesn't get press. Nor does Stills or Myathenia Gravis, even MS.
It may be that your daughter will develop more symptoms as time goes on or the symptoms she has right now may go away. That also happened with my brother. He lost weight just before his Bar Mitzvah, ran a fever for an entire year of 100 or greater and looked awful. Then it disappeared. (He only developed aplastic anemia when he was about 38; until then, he ran miles every day and worked out. And he does that again now after almost dying and needing a bone marrow transplant which he did not get because there were no matches.)
And it may be that the doc will find that your daughter has positive tests for Anti-DSdna, high complement levels (C3, C4), high sed rate and CRP (indexes of inflammation). A positive ANA + a positive anti-DSdna + low complement levels TOGETHER are almost certainly lupus. (Did your doc run a sed rate when he did the ANA test? That also would give you an idea of whether this was genetic or AI. Genetic diseases tend to have normal sed rates; AI diseases often have elevated ones.
Bumps on her skin/rash: teenagers get acne. Where are these bumps? And what do they look like? Bumps can be anything from atopic dermatitis to dry skin to food allergies.
Next, let's look at fatigue: I'm not sure what you consider to be fatigue, but with lupus it's far more than being tired. All teenagers are tired. I've raised 4 of them. None wanted to get out of bed. That's not fatigue. Let me put this in context: think of how you feel when you have the FLU and how hard it is to get out of bed. That's the fatigue we talk about. Trust me when I say that she would NOT be able to continue dancing if she had true fatigue. It's all most of us can do to walk to the bathroom.
Does she get a rash or sick outside in the sun? A rash across her cheekbones that is a bit scaly (usually). Joints that are warm or hot (not just achy).
I'm not telling you these things to pick on you. It's possible your daughter has lupus. But so many other things are more likely---Lyme Disease, Mono (especially in teens even those not kissing yet) are just as likely if not more likely once you take out the family history component (which wasn't exactly right). As mothers, we worry. A lot. But look at this as if you weren't her mother. So take a deep breath. I know this is very scary. No mother wants her child to be sick. It's hard watching our children be ill. But at the same time, sometimes we jump the gun on things; I know I did and I had a 10% chance of having passed lupus to her. Time will tell what your daughter's symptoms are. When you see the pediatric rheumy, write us all back and let us know what he/she said.
In the meantime, have you tried giving your daughter Naproxen (Aleve) daily? One in the morning, one at bedtime and see if that helps. It's what a doc would do for her with a lupus diagnosis to begin with anyway. And see if that is of any help. And arnica creams can be helpful (despite my personal feelings towards homeopathy).
Best of luck with this, I know how scared you must be, I've been there, but take a deep breath because your own fear doesn't help your daughter. BTW, my daughter wanted to be an actress last year and the year before. Now she wants to be a math teacher. That's kids. Your daugher will oly feel that her dreams are "stolen" if you freak out. Kids go through so many dreams before they go to college. And if she can't dance or act, she'll find something else she loves. That's what people do. But not if they feel that they've let down their moms who want them to do whatever.
Now that I've been properly "schooled"...Thanks Tracy...I'll tell you the little bit that I do know...I know what Intracranial Hypertension is because I have it. And while it may not be labeled as a autoimmune disorder it is directly related "genetically" to all the other disorders you mentioned...including anklosing spondlitis....which I may also have. I also know this because at least 5 different Neurologists have told me as much....including the one my mother sees several states away. And, while there is not a guarantee that a child who has a mother with MS will also develop MS the statistics that favor that development do rise.
Intracranial Hypertension for those who don't know...is a rare disease wherein our bodies either produce too much cerebral spinal fluid or cannot properly drain the fluid thus causing symptoms that mimic a brain tumor. (Thus the term Pseudotumor...or false tumor) This excess fluid squeezes the brain and spinal cord causing excruciating daily headaches (worse than migraine), dizzy spells, seizures, cognitive and memory deficits, a "whooshing" noise in the ears, insomnia, mood changes, exercise intolerance, hot flashes, water retention and swelling, visual disturbances, and chronic fatigue. " Let me put this in context: think of how you feel when you have the FLU and how hard it is to get out of bed. That's the fatigue we talk about.".....So, yes....even silly old me understands what the kind of fatigue that causes aches and pains all over to the point where you can't move feels like. Because of this my daughter has missed many a dance class, school and/or performances. But, just like MS,IIH, and other diseases...It is true that people with Lupus can go into remission...yes? (See I'm not as dumb as you thought Tracy.) The gold standard for diagnosis of IIH is a Lumbar Puncture (Where they take a long needle, place it in your lower spine and drain CSF fluid to check your pressures.) Normal pressure is between 100 and 180. My pressures were at 380. If these pressures, cannot be brought down they can cause blindess...which happens often. If the pressures get very high, they can cause death...which is rare. There are medications we take, which weren't specifically developed for IIH. They make us VERY ill as they mess with our electrolytes, have affects on our kidneys, and lowers our potassium. There are truly only three meds used to treat this disease. One...Diamox...is like poison and was initially developed to treat Glaucoma and Mountain Sickness. Two...Lasix...gentler than Diamox, but less effective....and created to treat congestive heart failure. And Last...Topamax, created to treat migraine and seizure disorder. Because these meds were not created specifically for IIH they make patients very ill and if they do work they only work for a short period of time. So, most patients end up having a shunt put in. There are many different ways to run the shunt, but the best is to do brain surgery....running the catheter directly into the venous area where CSF is produced, into the adjustable valve, down through the neck into the peritoneal cavity. Most shunts have a checkered history with a 50% success rate. Most of the time, these shunts get infected or blocked and patients can have as many as 5 surgeries or more in a year due to these issues. Additionally, the catheter in the peritoneal can get wrapped around your organs (mine got wrapped around my liver and landed me in the hospital for 2 weeks....they had to knock me out because the pain was so severe)....other times the CSF fluid can irritate the peritoneal and cause sharp pains. Typically these shunts, if working last only 5 years before a new one is needed. Each surgery can cost upwards in the amount of $90K causing financial hardship to those who already had to stop working.
As this is a very rare disease, most doctors don't even know what it is. I went on with symptoms for almost 10 years, the last 3 were the worst, before I was diagnosed. Because of this I have developed CSF Rhinorrhea which is when a hole is worn into the skull from the continuous high pressure....My CSF leaks out my nose and puts me at risk for infection to my brain. It would not surprise me if someday I develop cancer due to all the radiation I've been exposed to from CAT scans and MRI's....many more than I can count over the years. At least 30. I was called everything from a drug seeker to being bipolar by doctors who had no clue what this disease was. I was finally diagnosed in the ER by a doc who recognized the symptoms and papilledema in my eyes. He did the LP, and along with all the other symptoms made the diagnosis. There is no cure for this chronic illness.
It affects, men, women and little children. Many doctors will tell their patients that if they just lose weight they will get better...because they believe this disease is caused by obesity. I am not currently obese nor ever have been. Most men and children with the disease are also within normal weight standards. Those who are obese...have been known to lose half their body weight and still get no relief...while some have found it to help. Most need meds or bariatric surgery to help the weight loss progress as for many of us exercise, or any physical activity can bring on worsening symptoms. For me, my IIH was most likely brought on by a case of infectious mono I had when I was 13. There are several Secondary causes of IIH including Lupus, Antiibiotics, Leukemia, Vitamin A, Behcets disease and many others. Some with this disease will go blind. Some will die from infection, anesthesia or high pressures. Many of us will always be ill, while others may find some success with weight loss, meds, or shunts. Most of us will never find relief, and many will lose their quality of life.
Currently, my shunt doesn't work properly. I had my surgery last November. I still get sick, I still can't work, and there are many days that I can't get out of bed. My pressures rise, my valve doesn't open right away, I get horrible head pain and vomiting and we go to the hospital. Most pain meds don't can't begin to touch the pain from these attacks, and I have to be given very high doses of IV Dilaudid just to take the edge off. This could last anywhere from a few days to a week or more. My shunt will swell and then, eventually so much pressure builds up that my valve will finally open and large amounts of CSF leak into my peritoneal which causes severe pain for another week or more. And then the cycle continues....over and over again. As pain meds don't help many with IIH (because pain meds don't reduce the pressure causing the pain), many of us have repeated lumbar punctures to drain off the fluid and relieve the pressure. Since March of 2009 I have had 15 LP's.
I had my surgery at OSU, because nobody knew what to do with me here. Now that I'm back no Neurosurgeon will see me because they won't help patients who've had prior surgery from a different neurosurgeon. So every time I need to see my surgeon I have to drive 7 hours to Ohio from NY to be seen.
You might be asking yourself why the shunts don't always help when hydrocephalus patients seem to do so well with them. We don't know that answer .....but what works for one disorder doesn't always work as well for another. You might also be asking why I don't just have revision surgery. It's because each operation is very risky and the shunt was never guaranteed to lower my pressures to normal levels, just to lower them enough that I could function better than before. They also weren't meant to get rid of the pain...they are only there to prevent blindness. So, my surgeon is reluctant to do another surgery because the next shunt could be worse than the one I have.
If any of you get a chance to read more about our plight, please feel free to read our posts in the Pseudotumor Cerebri Group.
Oh...and lastly...you might wonder why I told you all this. It's because I do understand chronic illness and I wanted you to know that and why I understand it. Somehow I felt that I had to defend myself a bit I do know some things...and while I may have asked for your help with Lupus information...I wasn't asking due to some paranoid delusion about my daughters health. I was asking because her pediatrician asked me to.
Enough said. I am sorry you are all suffering so....I know what suffering is. Having said that, (Tracy), I hope you just got "schooled" yourself. I don't know what your tone was supposed to "sound" like through your post, but, it did come across in an offensive manner and demeaning manner.
Thanks.....MM3
P.S. To all the members of this group, may I advise that you not make Tracy the poster child or representative for your group. You'll never gain support or new members that way.
I cannot speak for Tracey but she does not have lupus she has stills disease which is rare and most people have not heard of it. She talks a good game but can be wrong in a lot of cases. She can be a bit harsh and no she is not in anyway a spokesperson for us at the lupus board. Most of us suffer from brain fog and we have trouble making sense in posts for me I cannot find words or put a sentence together so well. I am sorry that you felt belittled or talked down to, you do not deserve that tone.
As for you daughter I feel for her to have to suffer with lupus symptoms while a child would be hard to bare. I hope that with the help of good rheumies and medications they can get her back to doing the things that she loves again. I know that it is hard to suffer yourself and to see your daughter suffer is so disheartening. Anyway, with lupus and Aunt is not too far removed to pass along an autoimmune disease gene, when they ask your history for AI's they want pretty much everyone. Please feel free to come here with questions or just to vent we are here for you and care. Take care.
Oh my gosh...Your post made my heart ache...Like Mar said, this was a reality check for ME about how many others suffer even more/worse than I do at times. Im so so sorry for what you had/have to go through. It must be absolutely miserable and quite honestly, I dont know how you cope. Migraines alone, which i suffered from daily before I was diagnosed and started meds were the WORST thing in the world. I had them since I was 10 and just cannot imagine having nothing to help them go away. As I say to myself when Im having a bad day, "It could be worse" and you have made that saying I use to help me cope better a confirmation. I had heard of this disease but had no idea how debilitating it is and how hard it is to treat (being unsecessful so often). I understand seeing specialists who dont know whats wrong with you or how to treat you properly. I have Antiphospholipid disease which is an AI blood clotting disorder and have seen many specialist who are clueless about this disease and the treatment for it when it is systemic (like mine is), U get headaches and worry Im having a stroke, heart races and fear Im having a heart attack, i worry daily about my ticking time bomb going off and exploding. Im only telling you this because I understand the fear that goes along with a serious chronic disease that alot of times goes undiagnosed. please know that there are many people here who care about you and your daughter and are here to HELP you..Answer questions, give advice, etc. Speaking first hand, I know what its like to be ill as a child and I will personally try to help you and your daughter in any way I can. Even if that means just for you or your DD to vent...MANY of us here have been brushed off by dr.s or told they dont know whats wrong with us. Made to feel like we are a head case and so on. There are people here who understand what you guys are going through. Thank you for explaining your diseae. Passing on accurate information is power and gives us the ability to fight back when some dr.s who are suppose to help are more harmful then helpful (emotionally and physically). I would probably be dead right now if I hadnt finally found a rheumy who didnt give up on me and finally figured out I had APS. I was so sick I was ready to take my own life (and I still feel that way at times, even tho I would never do that to my son).Chronic illess is so hard not just physically for some but emotionally which is why I cherish having a group who understands every aspect of living with AI diseases.
I really hope you have better days ahead of you and that the dr.s figure out what is going on with your daughter. My toddler has issues of his own and even tho I know its rare to pass on AI diseases to boys, the fear/guilt is still there. Again, there are other things that can be causing your daughters illness/symptoms so I will say prayers that your daugter witll not have to suffer like you and so many of us do for the rest of her life. I know first hand also what its like to have to give up things that make you so happy because you are sick. I can completely relate to what your daughter is going thru because I was there when I was her age as well. Just to remind you, your DD can email me anytime if she wants to speak to someone who has lived what she is going thru. I hope that you know that there are people here who want to help you both in any way that we can. You are very well educated and your daughters problems will hopefully be figured out because of your knowlege. PLEASE let us know what her new specialist says. It breaks my heart to hear of children who are suffering and have an illness. Keep us posted and you can message me anytime.
Hugs
Melissa