Kidneys, Allergy Problems or What I Don't Know

Here is the thing, if she has blood in her urine DAILY then it needs to be addressed by a doctor. Period. If your current physician is of no help,maybe this case is beyond his training and you need to go to the next doctor until you get a definite answer.
My mother has a genetic kidney condition and is currently waiting for a transplant - it is no fun! There may or may not be anything that can be medically done to protect your daughters kidneys, depending what the finite diagnosis is, but I know as much: wait and see is not a valid approach if you do not know what you are dealing with. In my mom's case the doctors were very clear that they want to avoid a complete and acute kidney failure at all costs and put her on dialysis early to relieve her failing kidneys and get as much time with at least some function left.
You can try whatever you want with your DD's diet, but I would not rest until you have an answer as to what is wrong.
Good luck.

Blood in the urine is not normal, my father went through this the last two years of his life and his doctor was always alarmed when lab work found it. Get her to her doctor so they can find the source of the blood. Also address the other symptoms, don't be put off by "Probably genetic," what on earth does that mean? That it's acceptable? Insist on a referral to a specialist, see the information on lga nephropathy for the specific one who treats this. And eliminate the dairy in her diet altogether now.

There are SO many conditions that she could have, you need a definitive answer so you can then work at treating it.

God bless.

She needs to go to a specialist. Get her a referral. Now. Visible blood in the urine is not something to be messed with. I know it's tempting to jump online and do some research yourself, but it's rarely correct and most likely just going to alarm you (and make your dr or nurse roll their eyes if you tell them you've decided it's nephropathy). She needs to see a nephrologist, as soon as possible.

She needs to see a specialist and get properly diagnosed! CHOC or Miller Childrens Hospital have some great nephrologists and urologists.

I'm sorry, but in all my years of passing 8-10 kidney stones a day I never had visible blood in my urine. You need to get her into a nephrologist and find out why you can see blood in her urine. If they say it "may be" genetic, then you tell them to find out what it is...and if they keep blowing you off with "maybe" then you need to find new doctors.

I had to do this to figure out my kidney issues. I saw 13 different doctors before I finally got my answers. Now I pass 1 kidney stone every 6 or so months. I still have kidney pain, but that's because we're trying to get my meds straightened out, but at least we know what's causing it and how to control it!

Be your daughter's advocate and don't settle for maybe.

I suggest taking dairy off the list.. But there are 58 diseases that an cause red urine so it may not be blood http://www.rightdiagnosis.com/sym/red_urine.htm.. What does the dr say? Because believe me if I was having that issue with my kid I would be up the dr's butt till I got an answer even if I had to go to several or how many specials i had to see

I don't have much advice, but will hope you figure this out soon. Try eliminating all dairy from her diet and see if it gets better. We did that with my daughter and all her problems got better after about 2 weeks of no dairy. We try every 6 months to give her some dairy but so far she still has a bad reaction. The Dr. blew me off when I brought this up, so I took it upon myself to do an elimination diet and low and behold it worked.

I would also cut out the dairy and see if it gets better. You just never know anymore what they are feeding the cows that will cause a reaction. If your doctor is not addressing this then I would find another that will help you.

Good Luck.

My answer doesn't directly answer your question, but I notice when I eat dairy I am MUCH more prone to UTI's.

I went for a very expensive, unpleasant study at Cleveland Clinic that told me absolutely nothing except that I can hold my bladder for a long time. No duh. Really?

When I mentioned the dairy (and coffee) to the uro-gynecologist he pooh-pooh'ed me (very mainstream doc). But it is something I definitely notice (connection with UTI) . And I absolutely love dairy so it's a pain, literally.

I would be highly suspicious of the dairy, especially with the eczema or skin irritation on her head. I might also look at wheat too.

I would also look into an integrative physician - ours is an MD and gets "outside the box" with some of the testing. We never made much progress with one of our sons until we got away from mainstream medicine. Then he made huge leaps in progress.

Good luck and hope you can get some answers.

PS: I agree with Ina G. that this is NOT something that can wait.

The blood in her urine would be what would bother me the most. That is not normal I don't think. I would go to CVS is you have them there and get some urine test strips. Ova I think is that brand that I got last. Have her pee in a cup and dip the stick and it will tell you if there is stuff in her pee that you need to get her checked out for. Usually blood could been uti or Kidney stones. The scabs and stuff I could not tell you the only thing you might could do is take her to a dermitoligist for that and they may run some tests on it.

Good Luck and God Bless!

Hi D,

I've heard of this constellation of symptoms once before, but for the life of me, I can't remember the exact case or ultimate diagnosis. I do recall that the person was dealing with an extremely rare auto-immune disorder. Another possibility that comes to mind is an in-born error of metabolism, where your daughter could be lacking a crucial enzyme to convert a specific amino acid or set of amino acids. This could cause accumulation in organ tissue, resulting in functional impairment, which could account for the bleeding you're seeing (chronic nephritis of some kind?). Build up of certain amino acids can also result in a nutritional deficiency or collagen synthesis disorder that could account for the itchy, blood skin, swelling lips, etc. (This is all conjecture, however). If the case and disorder come to mind, I'll write again.

I agree that you need to see another doctor, though. In fact, you may need to see a LOT of doctors before you find the one specialist who has seen a similar case and can diagnose your daughter.

I suggest starting with a medical teaching hospital, such as David Geffen at UCLA or USC. The medical professors at one of these places are far more likely to be in tune with rare diseases and are more likely to have seen a number of mystery cases. I suspect it will take a team to figure this one out.

Another suggestion I have is to contact the NIH. Contact the Office of Rare Diseases and request access to their Undiagnosed Diseases Program: http://rarediseases.info.nih.gov/Resources.aspx?PageID=31. You might also contact NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases: http://www.niams.nih.gov/) and NIDDKD (National Institute of Diabetes and Digestive and Kidney Diseases: http://www2.niddk.nih.gov/), and possibly the NIH Clinical Center: http://clinicalcenter.nih.gov/. Someone at one of these centers should be able to get you to the right place.

Good luck. It will take quite a bit of perserverance and advocacy on your part to find the right doctor(s) who can help you figure this out. My daughter had pain and numbness in her leg and hip for over 7 years. In that time, in addition to her pediatricion, I took her to see at least 4 or 5 orthopedists, 3 different chiropractors, and several physical therapists. I finally found an orthopedist at Cedars-Sinai who was able to diagnose the problem, followed by referals to 2 leading neurologists who were able to confirm the diagnosis (pyriformis syndrome) and propose the appropriate treatment (temporary paralysis of the affected muscle with Botox followed by physical therapy, then expert chiropractic care). Fortunately, no permanent damage ensued during that time, and my daughter has normal movement and feeling in the leg -- no more pain! You just have to stick with it, and don't take "it's probably something genetic" as a final answer. It probably IS, but you need specifics, not generalities. Docs often will not admit to not knowing the source of the problem, and will tack on the closest label that fits out of convenience.