My son has been having issues since March. He has had multiple punctate kidney stones, at least a dozen sonograms, 2 CTs, and a list of tests. He was hospitalized twice (both times wiht blood in his urine) and when he was pain free this Summer a sonogram showed only one small stone. His pain returned and he again had blood in his urine (this time he also had crystals in urine) and a sono showed multiple kidney stones, measuring a bit bigger than his last ones.
His doctors are insistent that his stones are not the cause of his pain. They also say that this is not a ureteral spasm and they have checked him for various kidney and metabolic disorders and found nothing. We are wondering if maybe this is functional abdominal pain or if maybe the stones are able to somehow trigger functional abdominal pain.
- the pain can knock him over, not always, but it can - and does - multiple times a week
- always had lower right quadrant pain
- woken up in the middle of the night due to pain
- been hospitalized twice due to pain
- no medicine seems to help. He has been on everything from miralax to anti-spasmodics to oxycodone
- before his pain started, he had a month of nausea (and some vomitting) that seemed to come out of nowhere.
- pain seems worse in the morning
- sometimes I feel like if he gets determined enough he can somehow control them, but he has also missed
vacations, birthday parties, and outings with friends so other times I am just not sure
- lots of tests - He has had 3 surgeries (2 were to place/remove stent, one was to remove stones). Stones are either
still there or came back per a sono last week), and somewhere around 30 tests according to his patient
record. Everything indicates no cause for the pain.
On a sidenote:
1) His specialist said he was stone free on Oct 1st. He said when he went in for stone removal there were no
stones (our son had pased one stone at home which we saved to get analyzed)
2) Per an analysis, his stones are phosphorus, "carbonate appetite dahllite (100)". Two previous stone analysis
done this year (as well as one done when he was younger) were not able to give his composition.
3) He has randalls plaque in the left kidney, which his doctor said indicates that he is still forming.
4) Vitamin D is 16, protein is 61, IGA test was also more than double what is should be. I don't stress over these
things, because his body has been through all of this trauma this year. Also, this was done when he had a
stent for a month, so I am sure these numbers fluctuate.
5) Creatnine is really good. Protein/Creatnine ratio is just a tad high due to the elevated protein
6) Sed Rate and PTH are normal
As you can tell, I am pretty desparate, and the inernet doesn't offer much about this. Any help would be much appreciated. He has been pulled out of school twice, I have lost all of my leave from work, and he was supposed to go back to school this week but has been unable to.
At this point, I know we will have to somehow help him cope with this pain. But I have no idea how.. .