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  • Dealing with a child with IC

    I didn't want to continue to clutter up another thread, so I decided to start a new one.

    To summarize: my daughter has been having symptoms since she was 4. She is now 13 and up until yesterday, we could not get a Urologist to even consider IC because of her age.

    He recent pain has become so unbearable that she is clawing at her face and breaking things in her room.

    No one has EVER attempted to manage her pain other than to recommend some over the counter meds that don't work.

    Yesterday, we got an appointment with a urologist that I found through this website. He was very thorough in questioning, and wants her to have a CAT scan before making any diagnosis.

    He presecribed hydroxyzine, and said he would also call in a pain blocker. We should give these to her and see him in two weeks after the CAT scan.

    I had to make numerous calls to his office yesterday before his nurse, at 5 minutes before closing, called me back to tell me that another doctor in the office called in the hydroxyzine, but that the doctor that saw my daughter had to call in the pain med. He was in surgery and would get to it that night (Thursday), or first thing Friday morning.

    I have been calling them all day, and they will not take or return my calls. Their office is now closed.

    Apparently he cares as much about his patients as all the others did. Worthless.

    My daughter left his office yesterday in the best mood she has been in for weeks, thinking she might get some pain relief. Now she is even more depressed, hates doctors even more, and is looking at another miserable weekend.

    For any of you in the Houston area, PM me and I will give you the name of this so you don't waste your time with him. He and his staff are ignorant and do not care about their patients. Especially kids.

    Sorry for the rant, but I am so mad right now I needed an outlet.
    Last edited by FrustratedDad; 10-09-2015, 09:42 AM.
    13 year old daughter has had symptoms since she was 4. None of the pediatricians or urologists even mentioned or want to consider IC. Very frustrating. Please PM me if you also have a child suffering from this. I can use any and all advice.

  • #2
    Re: Dealing with a child with IC

    First I would like to say I am so very sorry to hear about your poor daughter and that she is dealing with this. It is hard enough being an adult, but a 13 year old should not have to deal with this, my heart goes out to her.

    Is there any way you can maybe take her to an urgent care and explain what happened? Maybe they will give her a few pain pills to help get her through the weekend? I am in total agreement with you, not many good doctors out there sadly. IC is so misunderstood, even in the medical community. I remember being in the ER a few months back for something else and I was trying to explain to the doctor there that I had IC. She did not know what IC was!!! I mean she was an older doctor too. Very pathetic in my opinion.

    If your daughter is in severe pain, I would maybe try taking her to an urgent care and maybe they will prescribe something for the pain just for a couple days until you can get a hold of this doctor who said he was going to get her something for the pain. I feel terrible for you and your daughter. I hope she can get some relief soon.














    Originally posted by FrustratedDad View Post
    I didn't want to continue to clutter up another thread, so I decided to start a new one.

    To summarize: my daughter has been having symptoms since she was 4. She is now 13 and up until yesterday, we could not get a Urologist to even consider IC because of her age.

    He recent pain has become so unbearable that she is clawing at her face and breaking things in her room.

    No one has EVER attempted to manage her pain other than to recommend some over the counter meds that don't work.

    Yesterday, we got an appointment with a urologist that I found through this website. He was very thorough in questioning, and wants her to have a CAT scan before making any diagnosis.

    He presecribed hydroxyzine, and said he would also call in a pain blocker. We should give these to her and see him in two weeks after the CAT scan.

    I had to make numerous calls to his office yesterday before his nurse, at 5 minutes before closing, called me back to tell me that another doctor in the office called in the hydroxyzine, but that the doctor that saw my daughter had to call in the pain med. He was in surgery and would get to it that night (Thursday), or first thing Friday morning.

    I have been calling them all day, and they will not take or return my calls. Their office is now closed.

    Apparently he cares as much about his patients as all the others did. Worthless.

    My daughter left his office yesterday in the best mood she has been in for weeks, thinking she might get some pain relief. Now she is even more depressed, hates doctors even more, and is looking at another miserable weekend.

    For any of you in the Houston area, PM me and I will give you the name of this jerk so you don't waste your time with him. He and his staff are ignorant and do not care about their patients. Especially kids.

    Sorry for the rant, but I am so mad right now I needed an outlet.

    Comment


    • #3
      Re: Dealing with a child with IC

      Okay, so I just got off the phone with the Doctor. Apparently his nurse must have told him to call me. He explained that after hearing us tell him we didn't want our daughter on narcotics long term he didn't think it was a good idea to prescribe a narcotic pain medication, because it might have long term negative effects.

      Our conversation was about getting her some relief until we got the results from the CAT Scan next week, not for long term.

      He said he uses it for adults, but is reluctant to use it with a child. We asked him if a child should just have to suffer because she is a child. He kept saying he was worried about psychological side effects, seeing as she is bi-polar.

      BI-POLAR???? We told him she wasn't and that changed his attitude. So, he said he would call in a small quantity of pain meds to get her through to the follow up in two weeks.

      So I will change my description of him as a jerk to careless. He had her mixed up with another patient, thus the problem with not writing prescriptions before leaving for your next patient.


      So my wife is headed to the CVS to pick it up.
      13 year old daughter has had symptoms since she was 4. None of the pediatricians or urologists even mentioned or want to consider IC. Very frustrating. Please PM me if you also have a child suffering from this. I can use any and all advice.

      Comment


      • #4
        Re: Dealing with a child with IC

        Okay, so I just got off the phone with the Doctor. Apparently his nurse must have told him to call me. He explained that after hearing us tell him we didn't want our daughter on narcotics long term he didn't think it was a good idea to prescribe a narcotic pain medication, because it might have long term negative effects.

        Our conversation was about getting her some relief until we got the results from the CAT Scan next week, not for long term.

        He said he uses it for adults, but is reluctant to use it with a child. We asked him if a child should just have to suffer because she is a child. He kept saying he was worried about psychological side effects, seeing as she is bi-polar.

        BI-POLAR???? We told him she wasn't and that changed his attitude. So, he said he would call in a small quantity of pain meds to get her through to the follow up in two weeks.

        So I will change my description of him as a jerk to careless. He had her mixed up with another patient, thus the problem with not writing prescriptions before leaving for your next patient.


        So my wife is headed to the CVS to pick it up.
        13 year old daughter has had symptoms since she was 4. None of the pediatricians or urologists even mentioned or want to consider IC. Very frustrating. Please PM me if you also have a child suffering from this. I can use any and all advice.

        Comment


        • #5
          Re: Dealing with a child with IC

          Hi FrustratedDad! I just moved to the Houston area and am seeing a female Urologist I really like. I did see a male Urologist first here and DID NOT like him. Please PM me and I can give you the name of the Urologist I see.
          Diagnosed via cysto/hydro 2/6/2015
          Symptoms: frequency, urgency. uretha discomfort, mild bladder pain (a raw sore type feeling.)
          CURRENT TREATMENTS:
          IC Diet (2/15) , Elmiron 100-300mg (3/15-5/16) insurance issues switched to PPS-DR (5/16-present) 2 150mg capsules daily (pentosan polysulfate sodium same formulation in Elmiron) DH Aloe 3-6 capsules daily (3/15), Schiff Digestive Advantage probiotics 1 pill daily (3/15), Amitriptyline 25mg- (5/15-8/16)attempting to wean down due to suspected weight gain side effect. Hydroxydine 25-50mg as needed at bedtime (5/15) Quercetin 2 pills daily to help immune system and body inflammation. Cystoprotek 4 capsules daily (8/15). Prelief as needed.
          USE DURING FLARES: Heating pad, ice packs for PFD, Vaginal Valium 10-20mg, Uribel, Pelvic floor stretches.
          PAST TREATMENTS: PFD physical therapy (6/15-10/15) & Counseling for stress mgt (9/15-12/15) both very helpful. GNC brand progesterone cream (not sure if this made a difference). Too many different diets and herbs to list.
          TRIGGERS: STRESS STRESS STRESS. BCP. Hormonal fluctuance (ovulation/period). Coffee, artificial preservatives and dyes.

          Comment


          • #6
            Re: Dealing with a child with IC

            I'm so glad you were able to get some pain meds before the weekend. Please be sure to post and let us know how she does with them. It's so heartbreaking when our children are in pain.

            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.

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            • #7
              Re: Dealing with a child with IC

              FrustratedDad, I know we have already been corresponding through PM, but I just wanted to comment on this latest development.

              Even if your daughter were bipolar, and I understand she is not, that is not a responsible reason to deny her pain management. I actually was a teen with both a diagnosed case of IC and a diagnosed case of bipolar disorder, and although it took much longer than my mother and I wanted, I was eventually prescribed narcotic pain relievers. They did not affect my bipolar disorder in any way, and trust me, I had a psychiatric team closely monitoring my mood. I did not become addicted to or dependent on them, nor did I ever take more than the recommended dose.

              That doctor's behavior is a huge red flag for me. Is there any way you can find another specialist?

              Many people with IC do also have mental illnesses. For instance, IC has been found to be genetically linked to panic disorder. (Look up gene map locus 13q22–q32.) These patients still have a right to receive pain management services.

              Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
              Current IC treatments: menstrual suppression
              Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
              As-needed treatments for other conditions: Klonopin, Ambien

              Comment


              • #8
                Re: Dealing with a child with IC

                Latest update. Had CT Scan done and followed up with Doctor this morning. CT Scan was normal, and he said he is going to add oxybutynin daily to the hydroxyzine, and follow up in 6 weeks.

                And, just like 2 weeks ago, he never called in the prescription and their office is now closed for the day. Apparently I can add this guy to the growing list of doctors that don't care about anything but their paycheck.

                Anyone in the Houston area can PM me and I will give you his name so you don't waste your time with him.

                Now we are looking, again, for another doctor. What a waste of time and money this clown was.
                13 year old daughter has had symptoms since she was 4. None of the pediatricians or urologists even mentioned or want to consider IC. Very frustrating. Please PM me if you also have a child suffering from this. I can use any and all advice.

                Comment


                • #9
                  Re: Dealing with a child with IC

                  FrustratedDad,

                  My friends daughter has IC as well. She is being treated by Dr. Robert Evans, who treats children with IC. Her screen name is: jvr and I am sure she would be happy to talk to you. You and your daughter are not alone in this, we are here to help. Praying for her and your family.

                  -Maryanne
                  Health Issues
                  IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
                  Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
                  Symptoms:
                  I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

                  Failed
                  Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

                  WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
                  Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

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