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  • #1

    Daughter's Pain

    My 14 year old duaghter was recently told that she most likely has IC. (We go in for the biopsy on 7-24, but dr. is 99% sure.) She alos has several other conditions that seem to be associated with IC. She is having very hard time. Until 4 months ago she was a very active and healthy girl. She wants to be able to go and do things with her friends but if she does to much or eats the wrong thing she in severe pain. She is also having a very hard time with the diet that they have put her on. She has been accepted to a private high school and is very upset and affraid that she will not be able to particate in things like she use to (ei: ski team, sailing team, feild hockey, cheerleading). Any suggestions on how to make her feel better about the condition or how to deal with the diet restrictions. (Those are major do to the fact she is very picky) Any advice would be greatly appreciated. I just wishes I couls take it all away and get her back to the girl she was 4 months ago.

    Thank you in advance,
    Shawna
    Shawna
    Tags: None
  • #2
    Hi,
    Welcome to the site. I am so sorry for your daughter. I was diagnosed 28 years ago at the age of 16. The adjustments are hard at that age. I remember having to go to the bathroom more and all the hassles with class trips etc. It did cause me some problems but there was not all the info out then that there is now. If your daughter will watch her diet that will help her a lot. There is also a product on the market called Prelief that can be bought over the counter that taken with food or drink that can be bothersome may take some of the acid out of the food. The other thing that might help if she has bladder pain are the stick on heat pads that you can buy at any drug store. They would last a school day and could be very beneficial. Tell her to hang in there. Read the handbook on this site and know that we are all here for her. There is life with this disease it is just a matter of finding the right combo of treatment options that work for you.

    Take Care,

    Jolene kissing
    Jolene

    "Life is what happens when you are making other plans" John Lennon

    IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

    Information for Patients can be found here.
    http://www.ic-network.com/patientlinks.html


    Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




    Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

    "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

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    • #3
      Welcome to the IC Network. I'm truly sorry your daughter is being faced with an IC diagnosis at such a young age. I know it's a tough pill to swallow.

      I encourage you to read the information in the Patient Handbook at http://www.ic-network.com/handbook/ There's a wealth of information there about dealing with IC. I know the diet is pretty overwhelming, but the good thing is that many people with IC can have some of the things on the "bad" list. I suggest that the diet be followed totally until symptoms ease --- then some favorite foods can be tried, one at a time several days apart.

      I think probably the most difficult thing for a teen is not being able to have carbonated beverages --- but bottled water is popular right now and could be a good substitute for her.

      Also, there's an excellent cookbook, written by an IC patient, available on this site. It's called, "A Taste Of The Good Life" and was written by Bev Laumann. I find it very helpful.

      Sending warm thoughts to both you and your daughter,
      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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      • #4
        Hi and welcome. I am so sorry for your daugther's pain and frequency and urgency. I always had that, and I was diagonsedin the early 80's with ic and then remisson and then again in 93 diagonsed with ic and remisson and then just diagonxed again in 2003 for ic and it is worse than it ever has been. I think the ic came back full force from the chronic utis and kidney stones I had over the summer. It is not fun having this, but there is life, I work at Walmart and am a cashier. It is tiring sometimes. I hurt sometimes and thinking of buying those stick on heating pads to help me during the painful days. I am 42 years old. I was in my early 20's when I wasfirst diagonsed. Hang in there.There's hope.
        Hang in there , There is hope.
        There is hope. Prayer works.

        Love, Debbie

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        • #5
          Thank you all for you advice I will read the hand book. Kera (my gaughter) also has kidney problems (massive overload of calcium causing cystals that irritate her left kidney, it seeems to be isolated to that side), IBS and we think endometrosis (sp) (we go in 7-24 for lap. surgurey at the same time as the biopsy). The hardest thing is that people don't understand how painful all these things are. Let alone that having them individually is hard but having them all together is unbareable. Her aunt told her last week to cut the drama, that her friend donated a kidney and didn't have that much pain so how could Kera be in all this pain. MORON, not even related to each other. Then her some of her friends don't understand that she can't do the same thinhs she use to.

          The diet is very hard, we did try the prelief but still got pain. We tried it with soda, she was dying for just one class after a month. We have not tried it again. She took only one tablet maybe I needed to give her more. Can any one suggest any snacks? That is the hard thing for Kera too, there really are no snacks for her. I will take a look at the cookbook, thank you.

          Thank you all again for the advice and being so welcoming. It helps to know there is a place I can turn to with questions beside the dr.s.
          Shawna

          Comment

          • #6
            I take at least 2 Prelief before anything I think might be a problem --- and sometimes 4 if we're going to eat in a restaurant.

            I hope Kera will feel better soon. It sounds like she has a lot going on; hopefully the surgery will help with the pain.

            Sending healing thoughts,
            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

            Comment

            • #7
              ((((((((HUGS))))))))) I am so sorry to hear about Kara, I agree people in this world are harsh and do not understand, its hard for us as adults, but as a child it must be unbearable.... on the first page of this web site is a wealth of information, diet, drinks, snacks ect... please check it out.
              prayers and thoughts are with you
              kissing
              brat
              'The will of God will never take you where the Grace of God will not protect you.'

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              • #8
                ((((((((Hugs for the both of you}}}}}}}Kera could also post here on the board if she is open to it, we do have a teen site and we help them there. I try not to drink soda, it makes me flare. But I can drink the clear american water sam's choice frm walmart which is carbonated. the carbonation doesn't make my ic flare. they dyes and chemicals they use in sodas make me flare, I may have a sprite or gingerale once in a while. I need to drink loads of water. Praying for the both of you. I have kidney problems too and I make alot of stones too. It is so hard to be young to have this disease.
                What a great Mom you are. Keep posting. Hang in there. There;'s hope. I did have endomertois too and that is painful too.If noone has this, they don't understand.
                Hang in there , There is hope.
                There is hope. Prayer works.

                Love, Debbie

                Comment

                • #9
                  Shawna,

                  There are quite a few of us that are younger, 24 and under, that all chat and email often. If she'd like to, we would love to include her into our little club. lmao It's always better with more people!! It also helps to let her know that she's not alone. That's the problem I had when I diagnosed. I felt like I was the absolute only person in the world that had it!! But the cool thing is that I'm NOT!! There are others my age that have it and they know EXACTLY how I feel! [email protected]

                  ~mel~
                  Life is just a cycle of brilliance and blues. I can't help it if I'm stuck in brilliance.. hehe

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