I am so sorry that your little girl is going through all this. I think I can understand why she is more than most anyone else on here. I see she had a colectomy and I dont remember if it said she has or had an illiostomy or not. I had a large part of my colon removed in October of 2010 due to a perforated colon and had an illiostomy for 3 months and that makes us at high risk for kidney stones. It happened almost immediately for me and I see it happened pretty quickly for your little girl and I am so sorry she is going through this.;
There are certain things that you need to know that you havent been told and have been told incorrectly. Obviously she had a 24 hour urine done but it sound like it was just done in the doctors office. That isnt the correct way to do it for the true cause of kidney stones especially if you want to see how to prevent and how to change things. There is a company called Litholink and that is all they do is test urine for kidney stones. YOu should take your daughter to a Nephrologist which is a kidney doctor = different from a urologist. A urologist is a kidney surgeon. A nephrologist is a practitioner of the kidneys and they actually treat and diagnose kidney problems - IE - kidney stone specialists, kidney failure, high blood pressure due to kidneys. They are the ones that will give you a prescription to call the Company Litholink - then the company will send you kit - in it, you will collect your urine for either 24 or 48 hours, however your doctor orders and then it gives you instuctions on how to proceed. Then you sent it back to the company. They then send a detailed 10 page or so report to your doctor on what is causing your stones and what is needed to prevent them in the future. I have had this done 2 times so far. I get it done once per year and each time, we adjust my supplements so we can make sure that I am taking the correct things.
As far as you saying you daughter cant have dairy - that actually isnt true. People that have what is called Calcium oxylate stones which are the most popular type stones = what you need to do is take 500mg of calcium citrate with each meal in order to bind with the calcium that you are ingesting and it also binds with the calcium in the stones in order to prevent them. It must be calcium citrate because calcium carbonate actually causes stones and that is what so many people remember from so many years ago and is still in the literature that calcium causes stones - it is the carbonate - calcium citrate prevents stones.
Because she is a child, it is that much more critical that she have her urine tested properly through litholink and see a pediatric nephrologist if you have one in your area in order to get the proper recommendations. Being she has celiac and had so much of her colon removed, it is going to be a life long problem. If you can get it stablized, it will really help.
I have had 5 kidney stone surgeries in the past year and a half since having part of my colon removed and hospitalized 12 times for chronic resistant bladder infections which turned out to be due to the stones which we didnt realize until the last of the stones were removed and they finally stopped in Oct. 2012. I am praying that I am done and I am vigilant about taking all my supplements.
This is what I have to take - 100mg of Vitamin B6 daily - this is for calcium oxylate stones as well. 1000mg of calcium citrate 3 times per day, 600mg of magnesium citrate 3 times per day with the calcium, 15 meq of potassium citrate 2 times per day. This is just due to the kidney stones.
Please check out Litholink.com - where do you live - maybe I can help you find a specialist if you need some help. I am in NY
OMG txarmywife...you went thru a world of hurt, I can sympathize, but in a different capacity! But I won't go into that or it would be longer than your post..lol
What I did want to say, is that our 10 year old came down to our bedroom christmas eve/christmas morning crying her back hurt. So I thought she pulled a muscle or something..so I gave her some tylenol, rubbed ben gay on her back and we laid back down. She calmed down for like a 1/2 hour, then was in tears...so off to the e.r. we went. They did blood work, and urinalysis...finally the doc came in and said they called in a tech to do an ultrasound of her kidneys to see if she had any stones. ? I was like, "she is 10!" But the doc wanted to rule stuff out, so I agreed, but was flumoxed at the thought of a 10 year old with kidney stones...needless to say, they found 1 stone that was 6mm. So 3 hours later Shay (my daughter) and I are in an ambulance on our way to a hospital 4 hours away from us for surgery. Well, on the way, or sometime that night, her stone dropped into the urethra (sorry if I get this name wrong, but between kidney and bladder) and stayed there. So they did another ultrasound in the morning, and since the pediatric urologist was on vacation (of course he is, it's christmas morning!) An trauma team surgeon looked at her scans, and said, "This is your decision, the surgeon consult said to go in her back and stent this until her can get here. But, I have to tell you, where the stone is is not a good spot, BUT, there is at least urine passing around it. So, most of the pain she has felt is going away since the urine is now moving..BUT, again, he does NOT want her going back to New York. So the decision is your. If she were my child, I would stay here, and wait for him. Since the urine is flowing, I don't want to cut into her. I think we can wait until he gets here in 3 days."
So, we waited. We stayed at the hospital for another day, then went to Ronald McDonald house for 2 days.
When the surgeon came back, he went in, and unfortunately, the stone had worn a hole in the urethra. So he had to put a stent in anyways, but at least he got the stone out, where the other surgeon would not have.
So, fast forward to July ( a mere) 7 months later...Shay again comes crying to my room...mom, my back! I had some of the pain meds left, so I gave her a dose, and in the morning called our pediatrician. Told him what was up and to please order an ultrasound, I would come get the paperwork. So we went and had it done.. guess what? In that 7 months she developed ANOTHER 6mm stone!!!
So, they went in for that one, and took it out, and had to do antoher stent because he tried to take on out that was growing and he figured while he was in there to grab it, but it caused some bleeding/clotting issues..
SO, here is my point....( which none of you mentioned, this is why I am mentioning it!)
They did a 24 hour study and found she has an overabundance of calcium in her diet.. she can now only have 1 serving of dairy a day and must increase her real lemon intake. As lemons (only lemon and only REAL lemon) help break down kidney stones that come from calcium!
Sorry, this was so long, but that is our experience..best of luck to all of you, I hope it gets better...