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EC imaging tests and other questions

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  • EC imaging tests and other questions

    My 4 year old son has symptoms of EC. He was diagnosed with kidney stones at 3 years old, but his symptoms persist (starting at 18 months till present), and are chronic even though only one extremely small stone was found on CT scan almost a year ago.
    Along with voiding symptoms (hematuria both gross and micro, painful voiding, retention, extreme frequency, flank and groin pain, etc) , he also has digestive problems. Chronic GERD and constipation since birth. He has been FTT, and still struggles with his appetite.
    He has elevated EOs, and his IgE is elevated as well, but no allergen has been found as of yet. (he's only been RASTed twice for the top five)

    He had an endoscope last year and nodules were found in his lower esophagus. (just thought I'd throw that one in there because it's not a common thing) He was biopsied for Eosinophilic esophagus and it came back negative, but only one biopsy was taken, and I have learned that more than one is necessary to rule it out.

    His renal US showed a growth on his bladder wall and some thickening, but the CT scan (with contrast) came back normal (other than one small kidney stone)

    I find it very hard to believe that one tiny stone can cause him to have these voiding symptoms for so long.

    My questions are
    Could a CT scan miss EC. Is it possible to get a better picture with US with a growth like this? or am I just grabbing at straws here?
    The hospital that performed the CT recommended a cystogram(sp?) but the urologist never pursued it and chalked the growth found on US to the possibility of a stone pushing up against his bladder.

    and does EC increase a persons chances of developing kidney stones?

    Does EC effect a 24 hour urine collection levels?
    He has no citrate in his urine. Do any of you have this problem as well?

    Thank you so much for any input you may be able to give me on all this. We have recently moved to a new city and I would like some sort of plan in my head before this new batch of specialists get started on my little guy

  • #2
    I know EC is rare but

    No one has anything about how they were diagnosed?
    How were your labs?
    How did your imaging studies go?
    How long did it take for a diagnoses?
    Should I push for a biopsy?
    Any other Eosinophilic disorders?
    What is your allergen?
    How is treatment going?
    What are your symptoms?
    Do they wax and wane like my sons?
    If you have a flare up can you contribute it to an allergen or certain foods?
    Is it a delayed reaction, or does it hit you right away?
    What is life like for you?
    Did you have problems with this even as a young child?

    I hate to sound pushy, but 60 reads on my thread and NOTHING?

    My little guy is in pain and they don't even prescribe him anything to help with it. Is there something he can take that might help him when he's living in the bathroom?
    Last edited by Melpot; 02-18-2009, 01:58 AM.


    • #3
      I'm sorry you haven't had responses. EC is not a common disease and I'm not certain we currently have any active members who have been diagnosed.

      It's my understanding that EC is diagnosed by taking biopsies from the bladder lining. I hope you're able to get some answers soon. It sounds like your little one is in a tough place right now.

      Have you tried putting him on an IC diet? I don't know if it would help, but it might be worth a try.

      Warm hugs,
      Stay safe

      Elmiron Eye Disease Information Center -
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      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        Sorry for no response but with all the Acronyms I don't know what you are talking about.


        • #5
          Thank you Donna

          I quick looked up IC diet from links here, and I found a list of problematic foods and I was just blown away. Eric hates so many things on the list, and avoids these things like they are poison. Things that normally a kid would like KWIM? and other than cereals/preservatives he already follows the diet by his own free will. He was prescribed citric acid/sodium citrate combo (very yummy stuff. Tastes like liquid jolly rancher with a sour bite to it) to help with his lack of citrate, and he hates it something awful, and other than his urine coming back with citrate now (which is good), it's so not helping, and at times I have thought "it's making it worse"

          Hummmm... interesting to say the least

          LOL our doctors will be so happy with all the information I have found. NOT! LOL


          • #6
            Originally posted by nottoc4 View Post
            Sorry for no response but with all the Acronyms I don't know what you are talking about.
            EC = Eosinophilic cystitis.

            GERD = gastroesophageal reflux disease

            FTT = Failure to thrive

            EOs= Eosinophils

            IgE = antibody found in the blood that is elevated during prolonged infection, and with allergies

            RAST = a blood test for allergies

            renal US = Ultra sound


            • #7
              I was diagnosed in '01 thru a bladder biopsy. That would seem like the way to go, but then again, I'm not a physician. I feel bad for your little boy, my brother was also diagnosed with EC at the age of 5, and it was hard on him. Your post is several months old, is he doing any better?


              • #8
                Thank you so much for asking, and letting me know about your brother

                He just had an acute attack, and the doctors all say it wasn't a kidney stone, but it sure seemed as though it was. It seemed as though something was blocking his urine. He strained and strained but only dribbles came. Finally after a couple days of him walking around like a penguin in pain he grunted and strained and BAM his urine flow was back, fever was gone, pain was gone, and all was well. I'm thinking there was a stone in his urethra?
                I hope so, and I also hope it's the last one.

                They did a urodynamics test on him AFTER he was O.K. (eye roll) and of course it came back normal.

                All the docs are saying that his urine symptoms are caused by GI issues. He just had a colonoscopy and endoscopy with biopsies and some labs. No results as of yet.


                • #9
                  Hi Melpot,

                  I'm 60 and was diagnosed by biopsy (twice) with EC. My symptoms are very similar and the only relief, and it's temporary, is when I take prednisone for about 2 1/2 weeks, and then the symptoms go away for about 3-5 weeks. I'ts always a tapering down, starting with 40 mg, working down to 5 and then stopping. There has been more posts on this subject here, but as time goes on and nothing new appears, they seem to disappear off the site. I've posted here about 5 times and have gotten some responses. I sincerely wish you the best in finding some relief for your young son. It's bad enough being old having it, but starting so young is terrible!

                  If you ever find anything new, please post or PM me. I thought mine was mold related for a long time, and I've since moved, but since then I've only done the prednisone trial once. I'm thinking of doing it a few more times to see if being away from the mold helps.

                  Best of luck to you and your son!




                  • #10
                    Thank you so much Jayess.

                    His Biopsies came back without Eosinophil infiltration. The GI says she is convinced his inflammation is not allergy maybe I'm on the wrong track with this.

                    SO officially he has inflammation throughout his digestive tract of unknown origin. (It really looks bad in there even worse than his first scope)

                    I wish his new Neph and Uro would have been more helpful. (the uro went so far as to say"There's nothing wrong with him. Maybe he just likes to pee". OMG! did I let him have it!)
                    His back hurts again and I'm seeing all the signs that something renal is happening. If history repeats soon he will have blood in his urine again and be peeing constantly. So I'm off to find new doctors for him, that are willing to screen his urine as often as it takes and start straining it so maybe we can catch a stone? Then... I don't know what my next step will be.
                    I guess it will be time to print out some info on EC and see if I get anywhere.


                    • #11
                      Re: EC imaging tests and other questions

                      Hi Melpot,

                      I've just returned here and found this old message. I remember that we corresponded a few times. How is your son doing? I hope things have improved for all of you. One of our communications you said you were considering building a new house to be totally mold free. Did you end up having to do that? I've been out of my last moldy house for about 5 years now. I still wheeze and have more shortness of breath, but it may be do to lifestyle habits. I'm finally addressing issues that I sort of just buried from those days we were talking. Anyway, I wish all of you the BEST in all aspects of life!

                      Jim (jayess)


                      • #12
                        Re: EC imaging tests and other questions

                        Hello again Melpot,

                        I wanted to say that I got some of the details of your son's illness incorrect in my most recent response. You weren't the ones considering building a new house, but the main intention of my post is the same, and that is that I hope he's improved, better, in remission, had his stone pass, whatever. As you know, it's difficult to see young kids go through some of this stuff that many of us have. The one thing I find very heartwarming is how resilient most kids are and how they keep such a good attitude or try their best. With that editing done, I still would like to know how everything's going for all of you!

                        Jim (jayess)