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Was an intravenous pyelography, ultrasound of the abdomen done? CT was with the intravenous or oral contrast?
With the pain (flank pain and testicular pain), does he have nausea, vomiting, urinary problem, bloating, distension, diarrhea/constipation?
What were the tests related to the urine done?
8/22 went to ER @ 11:30PM awakened by sharp pain in testicle and upper right flank/back(right side) about 4 inches above waist. Felt nausea but no vomitinga as I remember. Findings blood in urine - no elevated white count. Given pain meds and told to follow up with urologist or pediatrician.
next office day we went to pediatrician who sent us to urologist - who said that his symptoms were classic kidney stone and the large amount of blood in the urine was consistent with kidney stones. Films did not show a kidney stone. But he sent us home with flowmax and pain meds and filter. Caught a couple of blood clots in filter but never saw a stone. Pain lessened. He went back to normal activities.
Pain resumed in same places and we went back to urologist off and on for a week - they did several non contrast CTs in office and x-rays never saw a stone and urine showed no blood from their test( they tested for microscopic amounts - i am assuming it was the stick type test)
After repeated visits to urologist he advised the cystoscope procedure to go in and get the stone with a "basket".
9/11 Cystoscope to look for kidney stone - out patient. That afternoon seemed to be recovering nicely even able to stand up and play video games. That night went to ER because of extreme excruciating pain and difficulty urinating - the pain was unremitting for at least three hours and was finally helped a bit by Dilaudid. They did a CT scan that night no contrast. They admitted him to hospital about 5:00AM from ER. Blood in urine visible to eye.
Urologist said it was unusual but that his kidney had probably reacted to the cystoscopic procedure.
No abdominal ultra sound.
9/14 the CT was done with intravenous contrast as far as I know - that's what they said and he was warned he would feel "hot" with the contrast. I was not in the actual room where they administered the contrast. This CT was the only one with contrast and the only one that was abnormal. This CT showed right kidney to be inflamed and that the inflamation was creating a blockage. Urologist advised a stent from kidney to help it drain. This created more pain and agony.
9/18 After a few days the stent was removed and he was much better for several days.
9/26 He had gone back to school and played football. He had some pain in those two areas over the weekend but nothing severe. Wen to school on Monday and football practice started having severe pain again early Tues AM
9/30 and we went to another urologist. No blood in urine - I don't know the test but it was done in the office lab and gave percentages etc. not just a look under the microscope. normal white count too. This doctor after reviewing everything said he did not think my son ever had a kidney stone and that he had march hematuria and the pain he now felt was from the two procedures. He ordered the isotopic renal scan.
10/1 after a shower at night his pain in the right testicle was so sharp and horrible he described it as feeling like lightening. I still had pain meds so I gave him some and he was finally able to go to sleep
10/2 we went to his pediatrician's office because he was still in agony with the testicle - achy pain in the right flank but not nearly as bad as the kidney. They did CBC and fingerstick - everything normal. His doctor ordered an ultra sound of the testicles. Said they did not seem to move as they should but nothing dramatic. My son told her also about the supplement which is called Havoc and that during the 3 month period when he had taken them he had noticed the testicles seemed to be definitely smaller.
13/3 Woke with some flank pain and did vomit once. Both ultrasound and isotopic renal scan were normal His right kidney was found to be a little smaller than the left. Kidney function was 43 on rt. and 57 on left. No blockage shown. This day he had more flank pain than testicular but not severe. In fact he went to school for a few hours.
My question where do we go from here? Are we missing something deadly? As long as he does nothing and avoids showers (which he won't do of course) he seems to have only a little pain and achiness or none at all.
Obviously this is a diagnostic dilemma. I have some possible course of action and diagnostic suggestions for you;
1) The next step is to get a renal angiogram. The episodic blood in urine and pain associated with it, is called as clot colic. A small lesion like arteriovenous fistula in the renal parenchyma / tissue is not visualized in the CT scan or other investigations and can only be diagnosed by a renal angiogram. These AV malformations can give small clots which cause obstruction of the ureter and resultant pain. Embolization is the treatment for them.
2) Small casts passed in urine from kidney to ureter. They are so small that they are not caught in the basket but still are able to give erosion of the mucosa of the tract causing bleeding and pain. This pain is combination of the clot as well as small calculi. For this there are few further investigations which would be helpful;
a) Estimation of the parathyroid hormone; this is one of the frequent cause of recurrent stone formation
b) Serum calcium estimation
3) 24 hours urine for the estimation of oxalates (called as oxaluria) and calcium (called as hypercalciuria)
The scrotal or testes pain is a referred pain which happens when the clot or calculi reaches the lower ureter. Ultrasound is good technique to detect the abnormalities of the testes. Once it has come normal, I. would not be worried about the testicular abnormalities and with the flank pain and blood in urine, would concentrate on further work up of urinary tract.
Please feel free to discuss and for your follow up questions.
I probably did not make this clear he did have blood in his urine during that first period of time 8/22 for only a few days and thereafter it was obviously caused by the procedures -cystoscope and stent- was visible to the eye etc.. He has none now and has not had for over a weekand 1/2. Does the androstan/androgen precursor(Havoc) he was taking factor in to this possibly he was on it for 12 weeks and before that another strong supplement called 3D for months?
As a matter of fact these substances can be responsible for the whole of the clinical manifestations. The supplements are not scientifically studied so, no peer reviewed medical research or documents exist. Thus this should be considered for these atypical clinical features. These are usually self limiting and with time should remit on their own spontaneously. A hypersensitivity of scrotal skin by water/shower again should pass with time.
A wait and watch policy (watchful waiting) may not harm as it does not look that we are dealing with any life threatening disease or missing something by big margin. If the symptoms do not abate or decrease in the intensity, investigations on the line I suggested may be pursued.
It is pleasure assisting you.