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12 year old with Eosinophilic cystitis

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  • 12 year old with Eosinophilic cystitis

    My name is Brenda and I am the Mother of Cami who is 12 and we finally found out what was wrong with her she has E.C. and her Urologist has told me there is nothing she can do for her.Cami is in awful pain and is bleeding. I just need to know what I can do to help her. I'm trying to get her in to see a peds Urologist. Does anyone have any Info for stuff I can try at home to comfort her pain? and what specialist should I be looking for. I have contacted the Mayo clinic. I haven't heard back yet? I am willing to take her anywhere that can help her. Thanks, Brenda

  • #2
    What is EC? Can you tell me more?
    Your Friend,
    Michelle

    Diagnosed: 10/16/09

    Elmiron, 100mg 2x per day
    Imipramine, 10 mg per day
    Diazepam 10 mg for sleep
    Zyrtec
    Zovia, birth control (ongoing-no periods)
    Probiotics
    Hydrocodone, 2 pills a day (at any time of day)

    Comment


    • #3
      E.c.

      Its an inflamed bladder. With Eosinophilic cells. Which causes a lot of pain urgent bathroom stops. and bleeding from the bladder. I'm sure there is much more that I just don't know yet.

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      • #4
        I am so sorry to hear this! Do you have IC?
        Your Friend,
        Michelle

        Diagnosed: 10/16/09

        Elmiron, 100mg 2x per day
        Imipramine, 10 mg per day
        Diazepam 10 mg for sleep
        Zyrtec
        Zovia, birth control (ongoing-no periods)
        Probiotics
        Hydrocodone, 2 pills a day (at any time of day)

        Comment


        • #5
          SueC
          [email protected]

          Comment


          • #6
            I'm so sorry such a little girl has to deal with this. There isn't a lot of information available on EC; hopefully you can find a urologist who can help.

            There's some information from an ICN member who has EC. It's old, but there's a lot of good information there: http://www.ic-network.com/ec/cricket.html

            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            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.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            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.
            [3MG]

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

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            • #7
              I have IC and EC and bilateral vesicoureteral reflux

              I have done an enormous amount of research and have filled a couple of binders with info. The only thing I have read that MIGHT help EC is steroids or eliminate the cause. Just keep plugging in Eosinophils/eosinophilia, etc. into google search or where ever you can find a possible answer. Not sure how much diet has to do with it, but check out the IC diet and run it by your Dr. I am on many drugs at present so it is hard to know what is helping or hindering.

              Comment


              • #8
                12 year old with E.C.

                Thank you for your reply. Cami is doing well right now. She is on heavy duty Antihistamines, she has been on Macrodantin for 4months and is taking Ditropan for leaking. She has not been in pain for a while. Although I know that we are not at a cure state. We are holding it at bay and she feels good and is back in school with her friends. I found a new Doctor for Cami that is very interested in helping her.

                Comment


                • #9
                  Thanks for the info. Just yesterday my Urologist connected with Dr Deborah Erickson in Lexington, KY who has aggreed to consult with my Dr and wants me to take a boatload of Lab tests to rule out some possibilities, eventually I may need to go there, but I am grateful that the labs can be done here. Finding the Dr who is interested in helping, even if it means directing you to another Dr or source is a Godsend.
                  Blessing to you, Cami, and her Dr.

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