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Are these symptoms of my child having IC?

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  • Are these symptoms of my child having IC?

    My 6 year old daughter constantly feels like she has to go to the bathroom. She is constantly holding her crotch off and on. I have been to many doctors and specialists, and no one knows what's wrong. I heard about IC through a friend and wondered if anyone else has had, or heard of similar symptoms related to IC. My daughter has had a problem with fear of toilets, and had this problem since potty training. She has had a few bladder infections, but most of the time when she has had urinary tests, it comes up as no infection shown. She use to only use our toilet at home, so when we would go on trips she would hold back using the toilet for over 18 hrs at the most. Then things turned where she had to use any toilet she could, even though she was terrified of them, (the noise and size and ?), she would go every 15 min. at least. Four months or so later she would just hold her crotch because she said she always has to pee, even after she had to the bathroom. Now being six years she always holds her crotch. She said she has no stomach pains or pressure, or no burning at all. Just always has a feeling to go to the bathroom. Are these symptoms of IC?

  • #2
    Urgency is a symptom of IC. Some people that is their biggest complaint that they feel like they have to go all the time. It comes and goes for me. I would mention it to her dr. If nobody is helping her or coming up with any answers to what this could be I don't see how it could hurt to bring it up. Some people have said that they have had IC their whole lifes but didn't get diagnoised until later in life. I know that I always had to go more than my friends when I was younger.

    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus


    • #3
      Hi, Jeana and

      I'm sorry to hear about the problems your daughter is having. These can be symptoms of IC. Has your daughter been through any tests? I am now 28, but first started having symptoms at age 3. By the time I was around age 5, I had an IVP (a die test to see if your kidneys are functioning properly), a hydrodistension and some others.

      Right now, diagnosing IC pretty much comes through a process of elimination. I would encourage you to continue working with a good urologist to figure out what is causing her symptoms.

      My symptoms were very much like your daughters when I was that age. My parents tell me that I'd go to the bathroom and then almost immediately say I needed to go again. Sometimes I would have burning, but I didn't have pain. Actually, to this day my biggest symptoms is that feeling of pressure like I always have to go. I was on numerous antibiotics for infections, even when one didn't show up.

      Feel free to PM or e-mail me if you'd like. My e-mail is [email protected]. While everyone has a different story on here, I am one who has had bladder issues/IC for as long as I can remember. I can also tell you with all that said that I still had a wonderful childhood. Hope and help are available.

      A few things you might try include using a warm bath for your daughter. Warmth can help alleviate some of her feelings of having to go all the time. I use a heating pad these days, but as a child took warm baths. Be aware that bubble bath can irritate the bladder. You also might consider a few diet changes for her - like cutting out citrus foods (orange juice, etc.) and caffeine. Those two were my biggest triggers as a child. You can find more information about the IC diet on this site, including a list ranking foods in order of risk.
      ~ Stacey


      • #4
        That's a tough one. It's possible that what she has is interstitial cystitis. Does she have any itching and/or burning? It's also possible for a child to have those symptoms from bubble bath or those made-for-children products to put in bath water. You might try switching her over to the shower. I also think it would be a good idea to be sure she's wearing 100% cotton underpants and double rinse when they are laundered.

        What kind of soap does she use for bathing?

        You might think about something like carrying cleansing wipes in your purse so you can wipe off the seat any time she needs to go away from home. It might make her feel more comfortable about it. You might also want to talk with a counselor who specializes in children in an attempt to find out why she is afraid of using different toilets.

        Is she seeing a urologist? If not, I think that would be a good idea.

        Sending warm hugs,
        Stay safe

        Elmiron Eye Disease Information Center -
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        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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        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.

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


        • #5
          Sorry about your daughter

          It is really hard to see your children hurt and not be able to help them. I have a friend whose daughter had a similar problem, she wasn't terrified of pottying, she just had to go alot.
          This I don't think is IC. IC comes from years of acid eating at the bladder, I know it is said to be genetic, but I think if she had this she would've had to been drinking nothing but sodas and acidic juice since she was a baby.
          Anyway, what had happened to my friend's daughter was that she had to pee all the time, she would go and then minutes later have to go again. When she was in school she kept getting in trouble because teachers thought she was just pretending. She would really get upset and always have to go right after she had gone.
          Turns out she had some kind of thing going on where her bladder was not developed the way it should be, and there was like another section connected to it. When she peed her bladder would not empty all the way. The rest would go into another section and fill a smaller part of bladder. So she was having to empty her bladder 2-4 times actually. I don't know what this is called, but they had to have surgery done to her so that her bladder would empty the way it normally should.

          I would do more research on this and take her to a really good, highly rated specialist in children's urology or something. I would even look into any kind of symptoms that come from sexual abuse or even an allergic reaction to something. Not that she has been abused but it doesn't hurt to research. I also say an allergic reaction because it might be that either a bubble bath or soap she uses might be bothering her. Maybe even some of the chemicals that are in detergents or pull-ups or something. You said she has been like this since she was even younger, think about when it first became a problem and try to remember what changed around that time.

          As for the scariness of toilets, sounds like just a bad experience with being potty trained. If you were not the only one who trained her, do you think someone could have done this in a negative way that traumatized her?
          My little girl fell in once at Wal Mart and for the longest time didn't want to go at that store's bathroom because she was scared it would happen again. Good luck I hope she gets better, I will be praying for her, bladder pain (as everyone knows) is no easy thing to deal with. AT ANY AGE.
          Mrs. Ridings

          I was on...
          Loestrin 24(to prevent period induced flares)
          Elmiron since Feb.'07 for a year and half
          Atenolol for Migraines(caused by elmiron) since June '07(Had to have the amount doubled)
          Tried Prevacid didn't work.
          Tried Axert for migraines didn't work.
          Tried Frova for migraines made worse.
          Atarax Feb.'07-Feb'08
          Used to take IBS meds of all kinds, now I use Yerba Mate guayaki drinks, eating lots of fiber and flax seed, and taking probiotics and added magnesium. My probiotics help w/ flares too.

          Now for the occasional flare related to stress, I take probiotic eleven and marshmallow root and it will make it stop and Im fine again. Otherwise I dont have many problems w/ my severe IC like I used to.Thank God!

          Find the good in all things and then
          anticipate the good so that you may enjoy it.

          (KJV)Psalms 37:
          3 Trust in the LORD, and do good; so shalt thou dwell in the land, and verily thou shalt be fed.
          4 Delight thyself also in the LORD: and he shall give thee the desires of thine heart.
          5 Commit thy way unto the LORD; trust also in him; and he shall bring it to pass.


          • #6
            I disagree that IC comes from years of acid eating away at the bladder. I think that has been the case for some people, but certainly wasn't the case for me. As soon as I started having problems, my parents cut out all fruit juice and soda. That was around age 3. Research has yet to prove what exactly causes IC. The latest has found a marker in our urine that isn't in other urine called antiproliferative factor or APF. Currently researchers are working on an easy way to test for this and how to use this knowledge in treatment, which is very hopeful.

            However, as others have pointed out, other issues can certainly seem like possible IC symptoms. Having your daughter checked by a good uro is definitely the first step. As a child, my mom found I was often sensitive to other things, like bubble baths, non-cotton underwear, etc.
            ~ Stacey


            • #7
              I believe that IC is autoimmune related in many people. Our bodies are actually attacking ourselves in the case of IC, it is our bladder that is being attacked. Alot of things play into this. There is also the brain bladder connection thing, where the pain signals are messed up which causes the pain, and also there is the epithelium factor where the mucosa gets damaged, again as a result of an autoimmune response. IC is genetic in some people, but not all.
              I would definitely get your daughter in to see a pediatric urologist who is knowledgable about IC. I am so sorry she is dealing with this at such a young age. It may or may not even be IC, so I would get her evaluated. Hope she feels better soon.


              • #8
                Here's my little story: I've had bladder problems all my life--my mom doesn't remember if the cultures came out positive every time but I had A LOT of bladder infections. I had a uretheral stretch when I was 3 and again at 6 (they also did something else but my mom can't remember what) I always had to potty. My mom sent notes to my teachers. As I got older 10-12 I started having lower right side pain--in my teens I went to the ER numerous times because the pain was so bad. I was then tested for everything under the sun "except" an ultrasound. After the birth of my 1st child (23) the pain got worse and more frequent (plus I had lots of bladder infections--on antibiotics my whole pregnancy). After an ER visit they did an ultrasound and found that I had a problem w/my right kidney. After 3 surgeries it's been somewhat corrected. I have very few bladder infections now...but somehow I'm left with IC--confirmed by hydro/cycsto. I've had both my children checked to make sure their kidneys are okay. Not that everyone is the same but by eliminating possiblities will lead to a diagnosis and help for you daughter.
                Now the toilet thing--I have know idea on. I know my girlfriends daughter who is now 7 still won't flush a toilet. She's gotten past being afraid of using it.


                • #9
                  Please take your daughter to a pediatric urologist. My son doesn't have ic, but when he was small he would constantly have accidents. We had him evaluated and it turned out that he was having serious bladder spasms! He currently takes a bit of smooth muscle relaxant (like detrol, etc) and is doing great.


                  • #10
                    Thanks for all the information sent on IC concerning my daughter

                    Thanks for all the responses. My daughter has seen a pediatric urologist, she was given medicine for an overactive bladder, but it didn't help. I asked the urologist to check her kidneys and bladder (with ultrasound), but all that she did was just use a little hand held ultrasound machine to see if her bladder had emptied after using the bathroom. As I remember, I'm pretty sure that her bladder had emptied all the way. The urologist said that my daugher didn't need any other tests done. I give her showers instead of baths,and no bubble bath. I use cotton underware on her. I have talked with a councellor. I have been to many doctors and I have asked for her kidneys and bladder to be more seriously looked at. The doctors have said she is fine, needs no testing done, and that it's just probably habbit of grabbing her crotch. (Basically putting the "I have to pee all the time", to the side and not listening enough to spend time to help her"). I am going to try and rule out any kidney or bladder deformations or problems. I will have to keep pushing on the doctors to get tests done, and hope that they will finally do more serious testing instead of just urine testing. Hopefully I can get her into see a urology specialist that has knowledge on IC, that can help. Thanks again for all the comments, if someone has any other similar stories to my daughters, I would love to hear them.


                    • #11
                      Have they actually gone in and looked at her bladder or done any other diagnostic testing? There is a test they can do to see how the bladder is functioning. It's not fun, but it can tell you if she's having spasms. It might be that she is having spasms and the OAB meds just weren't helping. They did these exams for my son when he was five and that's when they saw the spasms. Poor kiddo has half the capacity now because he has overdeveloped bladder muscles.

                      Not sure where you are taking your doctor to the ped. urologist. But, of course, as with urologists for adults some are better than others. Get a second or third opinion!