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BS's mystery illness

Sia's picture

Submitted by Sia on Thu, 01/14/2010 - 11:53am

I am so frustrated with doctors and the like. As you may remember, right before Christmas, BS11 went to the hospital for a staph infection in his kidney. Well, they cleared it up and scheduled a VCU test (basically a voiding urine test) to see if, in fact, he had reflux in the bladder. They had suspected reflux (back flow of urine to the kidney) b/c of the massive scaring he had on his rt kidney. They said that the scarring could've only come from infection (absent any surgeries). So, the did the test to double check, or confirm it, before they removed 1/2 the kidney.

Well, the test showed normal, no reflux!?!?!? The doctors were stunned, as was I. We all expected to see it on the screen flowing back into the kidney. Nope. Not even 1 drop. This is good, I suppose, but now, they still are even MORE unsure about what is going on with him.

Boys rarely get kidney infection, it is rarer still to have a staph infection there. Staph would normally have entered through the ureter, then onto the bladder then to kidney, IF reflux was present. Absent the reflux, they are all stunned. Meanwhile, he sits in pain every time he pees AND his back hurts 99% of the time. I have gone online and even gone to the schools medical library and spent every waking hour trying to find what's wrong with him. Nothing, I found NOTHING.

I HATE that I can't help my child, absolutely hate it. He is apparently 1 in a million odd case that never gets solved. But, I NEED to know how/why this happened, and how to prevent it from EVER happening again. I know I am "expressive" on FB, but I never told anyone how REALLY sick he was. At one point, he was febrile and he was near death. This scared the crap outta me. I swear I will find out what it is, even if we have to go to the Cleveland clinic or someplace like that!
Thanks, just needed to get that off my chest.

Comments

Sia's picture

Submitted by Sia on Thu, 01/14/2010 - 12:05pm

Thx! He's seen every damn specialist in the city, except one, and we can't get in with him until Feb???? UGH, i'm gonna blow a rod! Wink

GeekySM's picture

Submitted by GeekySM on Thu, 01/14/2010 - 12:06pm

"Meanwhile, he sits in pain every time he pees AND his back hurts 99% of the time."

maybe those two things aren't related.

Have they done a spinal tap? could be meningitis, or a MRSA strain of Staph?

I've had all kinds of health issues, that's why I'm throwing it out there. Sometimes Docs like to combine symptoms, and in some instances not ALL the symptoms are related to the same issue.

also, maybe the pain isn't coming from the kidney like they thought, have they checked the pancreas or spleen?

OK now this is going to wrack my brain, he's young, so I'm thinking maybe something puberty related if so, you'd be amazed at everything the pituitary gland can screw up. Let me check my old resource medical books at home and see what I can come up with.

MsPerception's picture

Submitted by MsPerception on Thu, 01/14/2010 - 5:25pm

Wow, lady, do you have your plate full. Keeping my fingers crossed on his mystery illness. I know it's just no fun when they have regular kind of illnesses like allergies and asthma and all the fun those 2 bring year-round, but poor little guy's got it rough now and without anyone being able to figure it out. I hope the group here can help out better yet those danged doctors digging deeper to figure this out; let me know if you need anything. (((((hugs))))

**I only have one shot at a truly great life and not one spent waiting for a man to notice me, want me, love me and be true to only me. 2010 is the year of "me" **

Stepmom2Ched's picture

Submitted by Stepmom2Ched on Fri, 01/15/2010 - 12:42am

{{{{{Sia}}}}} I feel your pain, sweetie. My daughter went through the kidney reflux disease from a bad kidney infection when she was 3 years old. She was febrile as well...in the hospital with IV antibiotics streaming in her, her father and me giving her tepid baths to cool her body down. I would just want to lose my mind each time she had to be catheterized for her cystograms. Thank the good Lord she grew out of the reflux when she was 6 y.o. she was all healed--it reversed itself. She was on antibiotics for the entire time so she wouldn't have a breakthrough infection.

Did he get the staph infection before or after 1/2 his kidney was removed? If after, it could be from the hospital--I've read that's common for patients to get infections after surgeries.

Does he 'void' (urinate) on a regular basis, or hold his urine? Just some things that pop into my mind when I was dealing with my daughter's problems.

I hope the doctors, or even YOU can discover what's going on with him and his kidneys, or whatever's making him hurt like that. Kidney pain is NO fun.

~*~It's all fun and games until somebody loses an eye; then it's a game: Find the eye.~*~