This is going to be long, so please bear with me. My daughter is four years old. At the age of 2 she became really sick with a high fever that lasted 2 weeks. After numerous tests that were ALL normal they guessed it was probably some unknown virus. Several months later she again ran a high fever for 10 days this time, with again no known cause. Then in February of last year I was shocked to see that her urine looked like coke. I rushed her to the ER. She had no signs of infection in her urine only large amounts of blood. They ruled it Glomerulonephritis. They said most often this is caused by strep although she had not had strep and her blood work verified this. The dark urine persisted for 3 weeks and finally subsided. Although she continued to have microscopic blood in her urine. Eventually this prompted her pediatrician to send her to a kidney specialist. He said that this would either go away on it's own that it could be kidney disease. After 8 months she still had microscopic blood in her urine and her Nephrlogist said that she probably had IgA Nephropathy but that there was a possiblity it was Lupus. Well today almost one year later she still has blood in her urine and during periods of illness she has the dark urine. Well about 2 1/2 weeks ago she started running a fever. It's been as high as 104. This fever has now lasted 14 days. She was tested for strep, flu, Mono, UTI etc, and all were normal. I can't understand why she would have a fever so long. She has complained of stomach pain but had vomiting or diarreah. She also complains of knee pain. They have done blood work to test for lupus, that has not come back yet. Have any of you ever had any experiences like this?? I'm just hoping somebody, anybody can help me out and maybe shed some light on this situation. PLEASE HELP!!

((((((((Mindy & daughter))))))). I am so sorry the two of you have had to go through this:(. I know how excrutiatingly hard it can be to wait for test results, especially when your baby is sick. Whatever this is, Lupus or otherwise, it is very serious, and if this Dr. can't give you a firm diagnosis after all of this time, I would strongly recomend a second opinion. I am not a medical Dr., only a person with SLE, but I can tell you that as a child, I often had unexplained, long lasting high fevers, and, when I was about 4 I experienced about three episodes within a years time span of extreme hip pain......I couldn't get up or down off of the toilet, or out of a chair, and would scream profusely when I had to do so, I also had dark urine with blood in it, my parents were told that I was likely having kidney infections, even though no evidence of this was found. This occured a few times, When these symptoms stopped (hip pain and urine trouble) it was thought that I had "outgrew" whatever it was. I retrospect I suspect "it" was Lupus. The fevers continued intermittently for my entire life. You are doing the right thing by not letting this issue drop and continuing to persue it, hang in there:angel:, God Bless both of you.

Thanks realisticchic. It's so hard not knowing for sure what is wrong with her. I feel like she's sick more than she is well. I feel so helpless. I guess as a mother my gut is telling me something is wrong, Lupus seems the most realistic. I'm sorry about your Lupus how do you manage yours?

I am on medication daily, I rest a lot more than I used to, and, I am very careful about planning activities, last but not least, I wear a lot of sunscreen everytime I go outside, even for only a few minutes. Lupus isn't the end of life , it's just a different life :)

Was your hip pain constant or did it seem to just go away at times? My daughter will have a whole day, where like you said, I have to carry her to the toilet. (her pain is in her knees) Then the next she'll have only periods of the pain. Then a day or two will go by and there is no pain, then bam it's back. Was yours this way? Also I don't think you mentioned but did you ever have stomach aches? My daughter complains abouther stomach all the time. When she's running the fevers it is worse and she will not eat. Now she says it hurts before she eats and then after eating she cries because it hurts so bad. She is a very tall little girl but weighs only 28 pounds right now. Also (and I apologize for all the questions) about a week into the fever she broke out in a rash. Small bumps all over her torso, neck arms and legs. The doctors tried to tell me it was roseola. Well the only problem with that is the rash appears when the fever breaks. At this point she was still running up to 104 fever. After the rash appeared the fever presisted for 10 days. So I don't buy that at all. Still no word on the blood work. But her Nephrologist said that most of the time, even if the child does in fact have Lupus, they will all come back normal...so frustrating. Thanks for all your help. It helps to talk to somebody who understands, you must be an angel :angel:

Yes the joint pain was severe, so bad I would scream, it would stay for a couple days, just dissappear for a while, and then BAM, out of the blue it would come back. It really frustrated my parents a lot. I have had frequent stomache aches all of my life, and frequent IBS symptoms. I used to sit for hours at a time in a corner with my knees pulled up under my chin. The Drs. first told my parents I had "spastic colon", then when I was a little older, they said "diverticulitis", then they said "IBS", finally in my 20's I was told I had Crohns.......amazingly though, it greatly improved once I started treatment for Lupus. Something else that just now came to mind......kinda gross, but it may help, when I would eat, sometimes I would pass whatever I ate like 20 min. afterward and it would look just like it did going in.......when I was a kid, I thought this to be great fun where cheerios were concerned:cool:. I too am very tall, and was underweight as a child, I was also "hypermobile", meaning I could over extend my joints without pain, this has since been found to be an actual disease and sometimes is a pre-cursor to auto immune problems. My parents were also told I had Roseola several times, along with Fifth disease......Believe it or not A year before I was DXD, a Dr. told me I had Fifth disease........I was 34!!!!!!:eek: Sometimes the labwork for Lupus does come back negative for a while, as the disease continues to develop, but, I would think with her symptoms that something would come back amiss. Take care, and, I hope the labs come back soon:)....I forgot to ask, but are they testing her c3 and c4 levels too? Those tests help the Drs. to see if Lupus is active in the kidneys.

Hi. Like realisticchic & your daughter, I had severe problems back to my earliest memories, from age 3 or so. Very high fevers, convulsions, pain, urinary problems, GI problems, etc. I ended up in children's hospitals several times, with my parentstold being my chances weren't good.

Then one fine day pediatric specialists in a major hospital concluded that I'd been given far too many antibiotics---& that it appeared that I couldn't tolerate certain sulfa-based drugs. 45 years later, I was Dx'ed with lupus, and read that some people with lupus have great trouble with certain antibiotics.

Has your daughter taken a lot of antibiotics? Is her dr. a rheumatologist? And does anyone know: are there PEDIATRIC rheumatologists?

Just some thoughts... and to send you both my best wishes. May you get a breakthrough very soon! Sincerely, Vee

I don't know if there are a lot of pediatric rheumatologists, but my Dr. and another in her practice are listed for pediatric rheumatology. I found my Dr. by going to the American College of Rheumatology site, and looking through the Drs. listed there. I might add, my Dr. works as a college instructor, and is employed at a teaching hospital associated with that college, my thought is that it may be easier to find a pediatric rheumy at a teaching hospital?

My dauaghter seems to being doing much better. All of her blood work came back normal and they are now sending her to an infectious disease specialist at UAB. I'm not really sure what he's going to tell us. Her Neprhologist already told us that most of the tests they do for Lupus come back negative at a young age, even if they do in fact have it. So I'm not convinced. Thank you for all of your support.

Thank you for updating us:) I hope this new specialist can put things together for you and your daughter, take care:)

Well we went to the infectious disease specialist. She said that all of her test results were not normal. She said that her Sed rate was 60. What does this mean?????.... she said inflammation. But I'm not sure if this should be a concern or not. They took a ton of blood from my daughter and are testing her for everything. I also showed her the ulcers that my daughter has in her mouth that are causing her a lot of pain. I know this can be a sign of lupus. Does any have thoughts on this??? I'm sorry, I'm just so frustrated.

I think you are doing a wonderful job of advocating for, and, taking care of your little girl:). A high sed rate means that there is a lot of inflammation in the body. It was great that you showed her the mouth sores! They can be a symptom of Lupus, I get them, but most of the time mine do not hurt. I'm not sure how many other (non lupus) conditions there are that cause mouth sores. That might be something to research. I'm glad this Dr. seems to be testing her very thoroughly, and I hope you have an answer and some relief for your daughter soon.

what i would suggest at this point is seeing a pediactric rhemuatologist... good luck

We got the blood results from the infectious disease specialist and I'm a little confused, as is the doctor.
The only two abnormal findings in her blood work were extremely high levels of calcium in her blood and her IgM levels were very high. She is going back tomorrow so they can test her IgG levels. The doctor said the high IgM levels point to Brucellosis, which you can get from eating or drinking unpasturized milk products. She has never done that so I'm really confused. Any thoughts on this???? She said the high calcium levels are probably due to her kidneys not working properly. AHHHH, I'm just so frustrated.

The second brucellosis test was negative, so we're back at square one. Frustrating :confused:
I'm so tired of all of this.