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  • #1

    Searching for coping strategies for children

    Hi!

    I have a four year old daughter who has all they symptoms of IC although, we don't have an official diagnosis (I can't get the dr's to believe that children can have it) and I am desperately searching out coping strategies to manage her pain.

    She is currently on ditropan (that helped for about 4 months) and aloe vera juice. She also takes advil for pain. I feel like I am on my own searching out ways to help her, because the doctor's just keep saying it is stress related (of course they are not here at 2 in the morning watching her cry out in pain).

    We only have 2 pediatric urologists in town, and she has seen one, and countless other doctors and I have yet to get even one of them to read the information that the ICA has provided me.

    Any advice would be greatly appreciated!

    a_mom
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  • #2
    Sorry to hear this...I have had IC since I was 7 (I am 17 now) and there was only one pediatric urologist where I live, so I know the limitations of not being able to find a good doctor. For 7 years I was told that it was stress-related, all in my head, that I had anxiety disorder, you name it. Finally I was diagnosed at 14. At this time I still saw the same pediatric uro and my mom had found some info on IC (we had never heard of it before that) and basically had to beg him to test for it.

    Have you tried the IC diet? I know it would be hard for a small child to follow, but it could be worth it if it helps her pain.

    Is there any way you could get her in to see an adult urologist? It might take begging and pleading but the result could be getting her to a doctor who actually understands IC. Pediatric doctors of any kind are usually pretty clueless about it because they see it so rarely.

    The main piece of advice I always give in situations like this, is don't let her get labelled as crazy ot having mental problems. You know there is something wrong even though the doctors will not believe you. She is very lucky to have a mom who knows about IC. I have also brought printed info to many of the doctors that I have seen. Some just leaf through it briefly without paying attention or taking anything in, or lie and say they have read it when in fact they have not. Some ingnore it completely. I think it is important to have a doctor who will listen to you.

    For the pain, I am not too sure about what meds are safe for children, maybe someone else can help you out on that. You say baths help her. Does she take baking soda baths? For some people they help with the external vulvar pain.

    If there is anything I can do to help, or if you just need someone to talk to, you can e-mail me at [email protected]

    Good luck to you and your daughter. I hope she finds some relief soon.

    Laura

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    • #3
      My daughter is also showing all the symptoms of IC, but no one will even do an IC test, cause you know, shes not 18 so it could not be that.,.....hogwash.

      She has been on Ditropan on and off for over a year, imiprimine, and sorbital. The imimpirmine and sorbital was at first for her IBS (they would diagnose her with that...shesh) but I found the imiprimine worked very well for the IC style symptoms. I had to stop it though cause she never got the hang of swallowing pills and was chewing it, *shudder* she finally refused to try anymore. You may be able to get a doc to consider a tri-cylic anti-depressent........how? They are all perscriped for bed wetting all the time. Grace was able to stay on it as long as she did for the IBS and the bed wetting......only I didn't tell the docs that accidents during the day were more frequent cause her urgency is horrible, and when she has to go SHE HAS TO GO NOW. So she has, oh 3 secs to get to the potty. But it helped a lot. It is worth at try.

      I also use A&D on her privates when they get irritated from the urine.

      I also do the baking soda baths, and they seem to help.

      I hope you find a diagnosis for her soon. But we will be here to help you out until then. Lisa
      God is our refuge and strength, an ever present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging......The LORD Almighty is with us the GOD of Jacob is our fortress." Psalm 46:1-3,7

      May God bless our nation

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      • #4
        a_mom: If you have a pediatrician who does not believe your daughter is in pain, perhaps she needs a different pediatrician. Also, there are many urologists who treat children as well as adults. What your baby has may very well not be IC, but you need to find a doctor who will work with you towards a diagnosis.

        ...and for Lisa: I had to teach a two-year-old to take pills for asthma (I can't believe he's now in his 40's). I'm afraid I used a bit of bribery --- I first put a small amount of butter on the pill to make it slippery, then had him open his mouth and stick out his tongue. I then put the pill towards the back of his tongue and it went right down. The first few times I bribed him with sweet unhealthy stuff. Ater that, a small glass of chocolate milk to "wash it down" sufficed.

        Sending encouraging hugs to both of you,
        Donna
        Stay safe


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        • #5
          i just wanted to send you

          big mental huggs

          and tell you this is a great place
          to get the support
          i'm glad you found this network
          praying you'll find the right doc.
          sending you
          big mental huggs

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          • #6
            Dear a_mom,

            I am 18 and have had interstitial cystitis since I was 15. I also have fibromyalgia and irritable bowel syndrome.

            Feel free to e-mail me anytime if there is any way I can help you.

            Amanda
            ([email protected])

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            • #7
              A mom

              One suggestion that I have is to go the AMA site
              and look for the physicians listings. Just follow the links. Once you get to the Search by Physician Specialty Than scroll to the bottom and look for "search from an expanded list of medical practice specialties" and look for pediatric Urology.
              You can put in different towns in your area and hopefully you will be able to come up with a urologist for your daughter.
              AMA Physician Finder


              I also would suggest that you talk to a female uro. She may be able to help you better. They do seem to be more compassionate when it comes to children.

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