This will be rather lenghty but bare with me please. My daughter is 9 years old. At the age of 4 her pediatrician told us that she more than likely had neurofibromatosis. This was due to the fact that she had numerous cafe au lait (birth marks) spots. After seeing many specialists they decided that she probably did have it but we would have to wait and see. Anyway, about a year ago at a rountine physical they found a large amount of protein in her urine. They mentioned it to me but then dismissed it. I never thought about it again. Then a couple of months ago she got a really bad kidney infection. After she finished the antibiotics she went back for the recheck and all was well except she still had a large amount of protein in her urine. They had us come back the following morning with a first mornings urine sample. This time she had a moderate amount of protein. So they ordered a 24 hour catch. This came back only slightly high. So the doctor decided she was fine. Well several weeks ago she began having severe headaches. Another story but... my 3 year old had glomerulonephritis in Feb. and she sees a nephrologist. So I have protein test strips for her. So back on topic, I checked my 9 year olds urine and she had 2000 mg of protein. Also just to mention she had over 12 nosebleeds a week prior. So off to the doctor we went. He confirmed that she had high levels of protein in her urine. Her blood pressure was 132/90 and she had minor edema. Her ped. decided that she needed to be seen by a nephrologist. She will go to him on the 30th. The initial blood work came back normal. I believe they were checking for lupus and compliment levels. Have any of you had any similar situations?? What was the outcome. I'm really freaking out and wondering if this could have anything to do with the possible Neurfibromatosis or if it is something totally unrelated. Any help would be appreciated. Thanks.
Well we saw the Neprhologist. He believes that all of her problems stem from a kidney infection she had at 9 months of age. He thinks that because of the infection she incurred kidney damage that is causing the protein in her urine and the blood pressure issues. He also said that he feels that she does have neurofibromatosis but that it is not the reason for her kidney problems. At this point he does not want to do anything about it. I'm so worried still and feel like that there is something else going on. Her nose bleeds are out of hand and today alone she has had 2 of them. her compliment levels were normal as were her lupus test. But still I can't help but feel like there is something else going on. thanks.
I am 42 and have NF as well. Had the same symptoms as your son when I was younger. Nose bleeds, dizzy, but I had migraines.
Went through a series of tests including the 24 hour urine.
Has your son had an angiogram done?
