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Angel has IC

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  • Angel has IC

    I know some of you already know about me and Angel. But, I am posting here anyway to try to get things going. I am really hoping someday to finally meet another parent who has a child with IC. It's such a struggle at times.
    Anyway, I will start at the beginning. Angel has some learning problems. So, I thought that she was just not using the potty - even at the age of 3 1/2 - because she didn't understand. So, I tried every trick under the sky to potty train her. When she turned four, I was reported to child protection cuz she was still in pull-ups all day and all night. I told her doc that I thought that there was something wrong with her. (Little did I know that when she said her tummy hurt real bad, it was her bladder. I didn't even believe that her tummy hurt. Now I feel real bad!) I told her doc that it's like she can't tell that she is going - or she can't tell that she has to go. She knew how to use the potty. Whenever I told her to go she would go. She even remembered to wash her hands every time. But, 20 minutes or so after she used the potty, she would be wet! I cried so much. I thought I was failing as a mom. I am experienced with potty training. I potty trained my two sisters, my older 3 kids, and I ran a day care and helped potty train a couple of those kids.
    I kept taking her to her doc. I thought, if I was persistant enough maybe he would finally tell me what is wrong with her. But, he even accused me of not working with her! I was so lost. And, Angel was always so sad. The neighbor kids even picked on her for still wearing pull-ups. I tried my best to always stay calm and gave her all the encouragement I could. But, it was hard when I was being blamed for her not being potty trained. Finally, right before her 5th birthday, I got her doc to refer her to a uro. The uro, J.S., was soooo kind and understanding! She got Angel in right away for a hydro distention (Is that what it's called?). She showed me the pics of Angel's bladder. OH MY! My poor baby! When I was waiting, I was thinking that it was going to turn out ok. I thought about what the next step could be. Who would think? A child! Poor thing. He bladder was sooo cracked. And, really red. Her uro said that Angel has been dealing with a LOT of pain. She said that Angel needed to start the meds immediately and start the diet - very strict diet. It was so overwhelming - not just for me, but for Angel too. She had to give up almost ALL of her favorite foods! She threw tantrums, she hit me, she argued, she even threw her food on the floor. It was so hard for the first few weeks.
    I was at my wits end. Then all of a sudden, she was ok with everything. She told almost everyone (lol) that she has a "bladder problem". It was so cute. Now she knows most of the no-no's and if she doesn't, she will ask me if a certain food is ok.
    She is now wearing big girls undies. I tell her every day how proud I am of her for doing so good. She is even dry most nights. I think with a child with IC, the most important thing is that she knows you love her no matter what. I was very open with Angel about IC. I showed her the pic of her bladder and showed her what a normal bladder looks like. I explained the whole thing to her. I also told her that it's not her fault - none of it was. I told her that she was just like every other child - only she has to be careful of what she eats and use the bathroom a little more often. I let her know that she is more than just a kid with IC. She is beautiful. She is smart (in her own way). She can light up any room with her smile. Everyone that meets her, loves her right away. She knows that she is an amazing kid.
    Having a child with IC is stressfull at times. Lol... being a mom with IC and having a child with IC is really hard! But, as Angel gets older, it will get easier. I am waiting for the day when she is more able to tell me what she needs. And, when she can tell me a little more - like if a food bothers her or not. I still have her on a strict diet. I don't want to try anything new while she is in school. And, she is still on the meds. I am hoping to keep her on them until a stretch of time with no school. I would feel so bad for her if she had pain or wet at school.
    Anyway, I hope to see other parents here soon! I know Angel is not the only kid with IC!

    Heather
    The things kids say!

  • #2
    Hi Heather. My name is Donna and I don't have a child with IC, but I was diagnosed with it about a year ago. My heart goes out to you. I am writing basically to tell you that you sound like a wonderful mother and that I will say a special prayer for your Angel. All the best to you in the future.......Donna
    LittleFilly

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    • #3
      Hi Heather. My name is Donna and I don't have a child with IC, but I was diagnosed with it about a year ago. My heart goes out to you. I am writing basically to tell you that you sound like a wonderful mother and that I will say a special prayer for your Angel. All the best to you in the future.......Donna
      LittleFilly

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      • #4
        Hi Heather, just reading your post I can tell that you are a good, caring, and loving mother and are trying to help your daughter deal with something that is painful enough in adults let alone a small child with IC. I wish you and your daughter well, I know it must be a struggle for you with IC, and to know your daughter also dealing with IC must be hard. I do hope that you and your daughter know there is a lot of support and caring here for you both, and please let us know how you are doing, many hugs to you and your little girl, Iris hi grouphug grouphug
        Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

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        • #5
          Hello Heather,
          I wanted to cry when I read your post. I can kinda relate to her because that is about the age I was when I had that done. They put me on meds for some months and that was it. I still wet the bed til 10 though. From a mother to a mother, you are doing an AWESOME job, don't let anyone tell you different. I am still wondering if my little 4 year old has it, your story makes me want to schedule a cysto for her right now. She got potty trained at 3 1/2. She does say it burns sometimes when she pees or it hurts when I wash there in the tub. Your doing a great job and hang in there.....
          grouphug kissing grouphug
          Lisa1979
          I am not a patient living with IC,
          IC is living with me....for now.

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          • #6
            Heather--

            I'm not a mommy, but I can relate to Angel. I wasn't potty trained until I was 5 or 6, my bladder was in horrible shape that young. It was impossible for me. I remember my parents getting frustrated, and I felt so bad and so stupid and wanted to be normal. I am glad that you found out what is wrong with your little girl, it took me until 7 months ago (I'm almost 21 now) to find out what is wrong. Doctors refused to treat me for anything, telling me I was too young to have health problems.

            Hugs to you and Angel,
            Jess
            Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

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