[livingwith]

My now 21 year old son, has had multiple kidney stones for 5 years now. The unusual occurence with my son, is that he experiences kidney pain all the time, even when not passing stones. Per CT scan, he has at least 10 stones in each kidney. My son has figured out that if he eats sugar, drinks caffeine, or eats high amounts of carbohydrates, his kidney pain on both sides increases. He drinks gallons of water everyday as his pain is relieved when he does. His stones have been analyzed to be c...Read the full article

[TLT]

So sorry to hear about your sons struggle with stones. I understand what it feels like to be in constant pain. For the past year and a half I have been in the same situation. I only get stones every few years, but when I do they are awful. The pain from passing them is bad enough, but I too had the constant dull pain. While waiting for my doctors to do something I was placed on antibiotics on a daily basis, did not make it go away completely but it did help. The stones were giving me chronic Kidney infections. On 9/3/08 I had uteroscopy and had them completely removed. The best thing I did was seek out a second opinion. The original docs I had did ESWL twice and it did not work and because I have so much scar tissue from stones and infection they did nothing. Went to Hopkins they did all kinds of tests to see if i had reflux from the bladder to the kidney (VUCG), ultra sound of kidney and found it to be smaller and malrotated and are now in the process doing metabolic studies of blood and a 24hr. urine test to see the what and why of the formation of my stones. I found Hopkin's web site and called asked a few questions and now i'm further to figuring out how to live my life stone and pain free. Their site was very helpful. I am a week post -op and PAIN FREE!!! such a great feeling. I'm an RN and tried everything too. Finding the right doctor and the pathology of his stones through labs is the only way, ask them for tests (24 hour urine, serem levels, ultra sounds and maybe a VUCG). The hardest part for me was that I felt like no one believed I was in constant pain. Wishing you and your son the best of luck!

[TLT]

So, sorry con't. I got so caught up in your son situation and my story that I forgot to let you know the most important thing. SECOND opinion is the best option. I listened to originial urologist for 1 1/2 years with no relief. I had the second opinion and 1st meeting with Dr.Matlaga at Hopkin's on 8/21/08, surgery to remove stones 9/3/08 and pain free 5 days after surgery. He fixed it in less than two weeks and will continue to follow me until he finds out why I get stones. He is thinking medication therapy to fix the metabolic reason I form stones. If your close it is worth the drive or at least go to the site James Buchannon Brady Urological Institute at Johns Hopkin's.
hope something helps - TT

[jsbranti]

Thank you so much for the information. I will check out the website asap. We are on our second urologist now. My son will be having a renal scan to determine what exactly the kidneys are doing and how and if they are filtering properly. Coincidentally, I am a registered nurse as well. Hope you are well after your surgery, and again, thank you for your input. It is greatly appreciated. Jody

[lioness]

I am sorry for your son. I have only been a stone former for two years but it has been the longest two years of my life because I keep getting infections and I continue to have flank pain although not excruciating but uncomfortable not believed by my uro. I do have a new uro on my case who actually does the treatment and will do the f/u. My former treating urologist didnt talk to me never told me about the stones i had or why my stones never pass. My stones were all infectious when analyzed and had to be taken out in the flank bilaterally two years ago. I know what it is like when doctors dont find out what is wrong. My calcium wasnt addressed until this year and I was diagnosed two years ago.

Being that your an RN I am sure helps since you work with doctors who can sometimes be . . .i would definitely get a second opinion. I had my dad's urologist go over my records "under the radar" in the beginning who told me in the beginning that they werent treating the UTI and infectious stones grow pretty quick. . I told him thats exactly what I have told them. . my former treating uro who left the HMO I was treating last year wasnt really following up on the UTI he just put me on prophylactic antibiotics without f/u urine tests to make sure I didnt have the certain bacteria that causes the infectious stones. Since 2006 I have had 4 treatments and have uretroscopy w/lasertripsy scheduled for next month. My new treating uro actually talks to me something my former treating uro didnt, really disappointing when a uro who does 4 out of 5 surgeries on you doesnt talk to you about your case or prognosis since his assistants who did the metabolic f/u which wasnt done until 11 months later didnt know my history that well. I knew about my high calcium from my 24h but didnt think i would have to bring that up to a uro since calcium is the most predominant mineral in a stone.

I have learned to be proactive with my uro and on my case. If i hadnt communicated i wouldnt have gotten treated. With you being an RN you have to work with a doctor. Being a patient you and your doctor have to work together to get the right course of treatment and to find out why your son keeps making stones. Do you know what type of stone he has? Good luck i hope this helped you.

If you get a uro who does the surgery and f/u care that's even better. The doctor in charge knows your medical history better than assistants who "top sheet" the history.

[frustratedmom5096]

I hope that your son is doing better. Did you ever get any anwers/help? I am very sorry that your son has had to deal with this...but I was so glad to read your post.

My thirteen year old daughter has been complaining of backpain (mild to moderate) for a good chunk of the past few years. She was diagnosed two years ago with kidney stones. She takes Advil quite often...which worries me. She had many urinary tract infections, beginning as early as I can remember. She also had many "false alarms". She was having the symptoms of a UTI but the tests were negative...now I wonder if these were stone related. When they found the stones...two in her left kidney(one 4mm and the other one mm), the urologist diagnosed her with hypercalcuiria---her body doesn't process calcium properly. She has been on a daily medication ever since. Although the stones were just "sitting" in her kidney she would complain about aching and back pain quite often (even before she know about the stones). The doctor cannot explain this pain. Honestly, not sure he believes her. As much as it saddens me that someone else feels this "ghost pain", I feel better knowing that we are not alone. Last year they found no stones on the ultrasounds and xrays. They said they were either gone(to where? Pretty sure we would have noticed the 4mm "leaving") or were on the "wall" of the kidney and could not be seen. She has done much better since being on the meds but still quite often complains of the backpain...which the doctor cannot explain at all.

Twice, they have upped her medicine when she had blood in her urine, pain, and higher calcium levels again. The last occurrence was this week. She has missed four days of school in the past two weeks because of on again/off again pain and blood in her urine/urgency to urinate. I was told that she was probably passing a small stone. They upped her meds as well as her calcium was high. To top this off, her uretha has been dialated twice(last one two years ago..right before she was diagnosed with stones) as it is rather small (they had blamed her many utis on this), which seems to me may cause an issue when passing stones? We have strained and never "caught" a stone.

I am very frustrated at this point as my thirteen year old daughter was crying in the bathroom this morning, missed school again (as I am missing work) and the doctor seems to think its not a big deal "Let's up her med and see if she doesn't improve in a few days" Keep in mind the pain is not bad enough I have ever felt the need to rush her to ER but I want to know "Is this our reality, something we're just going to have to live with or is there something more I can do for her? "