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  • 4 y/o daugher with voiding symptoms. Any thoughts?

    Hello,

    I haven't posted on the boards here in several years. I'm feel very fortunate to have my IC under control at this point in time. This is the last thread catagory I'd like to be back posting in..I wish I was posting a question in regards to myself.. I have a 4 year old daughter who has had a few odd symptoms for the past few months and I was wondering if anyone might have any thoughts. My daughter came to me in early December and was complaining about pain that appeared to be above her pubic bone. I also had noticed that she was peeing a little more often. She also in addition began to have some post void dribbling after urination. I took her to the doctor and she tested negative for an infection. He thought she looked really red in her vaginal area. We applied the recommened creams and and everything including the pain in her abdominal area went away. She has continued to have the post void dribbling off and on. Some days nothing and then a number of days where it will happen once or twice a day. I went back to her doctor recently and he has referred her to a pediatric urologist at UCSF. He does not what is going on. She does not appear to have any constipation issues. She goes up to three times a day. I've been trying to see if I can make any correlation between what she eats and symptoms. She loves tomatoes and last week she ate like 3-4 and it seemed like there might have been a little flare of symptoms for a day or two after. My daughter then came home today seemed to have a bought of frequency. She has gone about 6 times in the past 8 hours. She has also had a leaking eposide or two this afternoon too. She told me that she drank cranberry juice at snack time. I'm feeling so scared right now. I just found out that one of my sisters has dietary sensitivities that can give her IC like symptoms. As long as she stays away from a handful of foods, she's fairly normal. Beyond that, both my parents don't know of anyone if either of thier families with any sort of bladder issues. I don't know what to think of all this. It just seems like the post void dribble is not as indicitive of IC, but the potential food sensitivies are. She just seems so young to me to already be dealing with this. I feel very distraught and upset over this. I'm really hoping the pediatric urologist will find something that can be fixed. Does anyone have any input? It would be greatly appreciated.

    Thank you kindly in advance,
    Jill
    "Where there is hope there can be faith. Where there is faith, miracles can occur."

  • #2
    I totally understand how scary this is for you, but it's not unusual for children to have urinary problems that are not interstitial cystitis.

    I do have a few suggestions: Sometimes problems can be caused by things like nylon underpants so if she's wearing anything but cotton, I think cotton would be a good idea. You might also want to look at laundry detergents as a potential problem --- I suggest double rinsing her clothing for a while. Some of the bathing products for children, especially the bubbly ones, can cause irritation --- it may be a good time to teach her how to take a shower.

    And I think it could be a good idea to steer away from a lot of acid foods until she sees the specialist. I have an adult friend who does not have IC, but still has a problem with acidy foods.

    Sending gentle hugs,
    Donna
    Stay safe


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    [3MG]

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    • #3
      Until you find out for sure what is going on with your wee one, I think taking Donna's suggestions are a good idea. I would also contact her school or where ever she is going to have snack time and request that there be another choice of drink available for her other than cranberry juice or any other acid type drink. Possibly milk would be a better choice.

      I hope this is something that will go away in time. (((Hugs)))
      Sharon

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      IC 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.

      Comment


      • #4
        Thank you Donna and Sharon. That's good advice. I've been very careful with the soap in the tub and have also been trying to rinse her off before she gets out. She does wear only cotton panties, but I haven't gone as far as to double rinse her panties so I will try that. Donna, do you mind if I ask what your friend has? I thought sensitivity to acidic foods always meant IC. That makes me feel very hopeful if that might not always the case. Thank you ladies SO MUCH for your responses. It's a lonely place to be-it's not something the average person generally understands. It's one thing to deal with urinary symptoms myself, but it makes me very upset to think of my child having to deal with anything of the sort.

        Thanks again,
        Jill
        "Where there is hope there can be faith. Where there is faith, miracles can occur."

        Comment


        • #5
          My friend was never diagnosed with any problem. They ruled out everything. She just avoids acid things and hasn't had further problems. One cup of coffee and she's in the bathroom, however.

          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


          • #6
            I'm sorry that your little daughter is having pain, poor little thing.
            I like to think in this cases that the chances that you and your daughter share a non genetic rare illness are slim..

            Talking more objectively, I would test her for allergies and food sensitivities..

            Let us know how she's doing.

            Hugs

            Comment


            • #7
              Update on my daugher.....

              Hello,

              I took my daughter to a local urologist last week and still feel confused. His diagnosis is Vaginal Voiding which is when urine pools into the vagina and then leaks out after the child stands up. I guess it's the most commen cause of post void leaking. The recommended cure for this is to have the child sit backwards on the toilet so that their legs are spread far apart therefor making it much more difficult for the urine to get trapped inside the vaginal area. I've been having her sit backwards on the toilet as suggested, but I still can't fully tell if it's helping. She got a fever last week and strangely enough ever since that happened her average frequency of every two hours has gone down to every 3-5 hours. (She has been urintating about 8-10 times daily with anything from a few hour to a full day episode of urinating every hour) Also since the amount of urinating has decreased, the leaking has started to happen every time she pees. I don't understand why once the frequency she pees went down that the leaking increased. The amount of urine that leakes out is only a matter of drops, but enough to bother her when it happens. The urologist ran a machine over her belly after she peed in a cup at the office and it showed a normal amount of urine left in her bladder after emptying so it appears that she's emptying completely. I asked about overactive bladder if his recommendations don't work. He asked if she has a lot of urgency and performs holding manuevers when she has to pee. My husband doesn't seem to think that she does, but I wasn't so sure. Well, now that she is peeing even less, but leaking more, I don't know what he would say now. He also didn't think that the stomach pain she has complained of on and off has anything to do with these issues. I just find it ironic that she complained of pain just right below her belly button the day before this whole leaking issue started two months ago. The tenderness above the pubic bone is never a symptom I've had. When someone palpitaes the area, would this hurt and make one jump? When I took her in originally when she was complaing of this pain the doctor palpitated her stomach all the way down to her bladder and she didn't flinch at all. He couldn't tell exactly where the pain was coming from and said kids her age often generalize and have a hard time being more specific. I'm still waiting to get a second opinion down at UCSF. I had been trying to get an appoinment, but was finally told that I had to attend an incontinent seminar first. I did that last Monday and am waiting for a return call to make the appointment. They will be opening up a special clinic day soon so all of us attending the seminar can get in faster than normal so that's why it's taking so long now. I'm going crazy here. I'm so scared that she is showing early signs of IC. Even if it ended being diagnosed as being overactive bladder is seems strange for a 4 year old to already have that. Any thoughts?

              Thank you,
              Jill
              "Where there is hope there can be faith. Where there is faith, miracles can occur."

              Comment


              • #8
                My sone went to a Pediatric Uro around that age. He was voiding often and holding himself alot when he would play or walk around. I thought he was learning, from me, about going to the bathroom too often since he stayed at home with me all the time.
                The uro couldn't find anything wrong. He seemed to be a great person but I didn't agree with some of his theories. I told him about my IC. He said there was no such thing. That if you voided completely and pooped often everything would work normally. But if you became constipated then the other would be 'off kilter'. I don't dispute that both areas need to be in sync with the other.
                Anyway..........
                What we did with our issue was get one of those sand timers. He sat down to pee and we started the timer. Once the timer stopped, he could get up. I think it was for 3 minutes.
                Also, if you are interested........the above uro I talked about DID come up with the Potty Monkey. It is a book and monkey with his own potty. I don't know if your little girl is too old for it or not. The idea is to learn to potty train but it also teaches the technique to not be in a hurry to get in and get out. (Their lives are busy and they can't miss a thing!)
                You're a good mom and you are doing a great job! I hope everything works out for you!

                BTW............our little boy is seven now and seems to have good, normal potty habits............so hang in there!
                Tons of support,
                Jaime

                IC angel helping families in need for the holidays. [email protected]

                Comment


                • #9
                  Hi, I am new here...I am just so happy that i finally found an answer to my daughters problem.....She is 5 and was using the bathroom up to 30 times a day. We had tests done for UTI's and an ultrasound done on her bladder, went to see a pediatric urologist......All the doctors said she was fine and normal... But I knew that going to the bath room that often Was not normal.... It was making her miserable...her whole attitude changed. I had no idea what was wrong with her and to top it all off the doctors told me that she was making it up and it was all mental. She couldn't fall asleep for hours at night. and she would wake up at all hours ....I didn't know if overactive bladder was possible in kids.....It lasted for about 2 months...it was horrible... now she gets weeks that are worse than others, but for the most part it isn't as bad as it was before..she says she gets the "urge" to go alot, but I try to tell her to hold it for a little while, then go, but usually only a little urine comes out....She now gets drips in her underwear...not too much, but enough to get her mad and she has to change her undies alot durring the day....I really pray that it doesn't come back like that again. Especially because she will be starting kindergarten in september....I recently talked to my husbands daughter from a previous relationship, age 17, and she said she has the same problem...all the doctors said she was fine too....Is this hereditary??? And has anyone heard of D-Mannose????? what do you think about it.....any thoughts..will it work for PBS? in kids?
                  Last edited by vanessa9611; 02-19-2009, 03:56 AM.

                  Comment


                  • #10
                    Dmannose is a natural remedy that is suppose to prevent UTI's. It does not really help with pain though. I have been on it for a long time on and off. It really did help me with preventing UTI's when I first started taking it, but then it did not work so much anymore. It is a good thing to try though, it wont hurt. I would get the powder form that you mix with a small (3 onuces) of water. It is sweet and tastes good so I do not think it will be a problem with her liking it. Good luck.
                    Oh, you can get the dmannose usually at most health food stores ( whole foods, and other natural food stores). Also you can order it online. I get the brand Manno Max. I like this one, it is purely natural, not other ingrediants. You could find them online. Good luck.
                    Jen

                    Comment


                    • #11
                      Jill, I hope you find something that helps your daughter.
                      TexasHoney

                      Let's keep praying for a cure.
                      IC Symptoms began in early 2001
                      Divorced : Sept 2002 (Partly due to IC)
                      Diagnosed with IC in April 2004
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                      Wed Jan 28 2009
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                      • #12
                        Before I was diagnosed with IC, my urologist suspected I had a urethral diverticula because one of my symptoms was occasional post void dribbling and more frequently just that sensation. He explained that a UD happened when one of the glands lining the urethra becomes infected and ruptures, forming a sac that can fill with urine during urination. Afterwards, it leaks out. He told me a UD can cause some of the same symptoms of an infection or IC and even become infected itself. An MRI can reveal a UD, which can be surgically repaired.

                        Good luck with your little girl and I hope you are quickly able to find answers.

                        Comment


                        • #13
                          Hi, I am new here...I am just so happy that i finally found an answer to my daughters problem.....She is 5 and was using the bathroom up to 30 times a day. We had tests done for UTI's and an ultrasound done on her bladder, went to see a pediatric urologist......All the doctors said she was fine and normal... But I knew that going to the bath room that often Was not normal.... It was making her miserable...her whole attitude changed. I had no idea what was wrong with her and to top it all off the doctors told me that she was making it up and it was all mental. She couldn't fall asleep for hours at night. and she would wake up at all hours ....I didn't know if overactive bladder was possible in kids.....It lasted for about 2 months...it was horrible... now she gets weeks that are worse than others, but for the most part it isn't as bad as it was before..she says she gets the "urge" to go alot, but I try to tell her to hold it for a little while, then go, but usually only a little urine comes out....She now gets drips in her underwear...not too much, but enough to get her mad and she has to change her undies alot durring the day....I really pray that it doesn't come back like that again. Especially because she will be starting kindergarten in september....I recently talked to my husbands daughter from a previous relationship, age 17, and she said she has the same problem...all the doctors said she was fine too....Is this hereditary??? And has anyone heard of D-Mannose????? what do you think about it.....any thoughts..will it work for PBS? in kids?
                          I would hate to not figure out what is going on. Hi, I am new here...I am just so happy that i finally found an answer to my daughters problem.....She is 5 and was using the bathroom up to 30 times a day. We had tests done for UTI's and an ultrasound done on her bladder, went to see a pediatric urologist......All the doctors said she was fine and normal... But I knew that going to the bath room that often Was not normal.... It was making her miserable...her whole attitude changed. I had no idea what was wrong with her and to top it all off the doctors told me that she was making it up and it was all mental. She couldn't fall asleep for hours at night. and she would wake up at all hours ....I didn't know if overactive bladder was possible in kids.....It lasted for about 2 months...it was horrible... now she gets weeks that are worse than others, but for the most part it isn't as bad as it was before..she says she gets the "urge" to go alot, but I try to tell her to hold it for a little while, then go, but usually only a little urine comes out....She now gets drips in her underwear...not too much, but enough to get her mad and she has to change her undies alot durring the day....I really pray that it doesn't come back like that again. Especially because she will be starting kindergarten in september....I recently talked to my husbands daughter from a previous relationship, age 17, and she said she has the same problem...all the doctors said she was fine too....Is this hereditary??? And has anyone heard of D-Mannose????? what do you think about it.....any thoughts..will it work for PBS? in kids? Most things possible in adults can happen to kids...the likelihood may be down.

                          IC can be heredarity but for most it is not.

                          Yes I have heard of D-mannose, It can be worth trying but like everything else ...it works for some not all...there is some maze to this thing. We are all very individual on what we respond to. I can't speak to a treatment working best with kids especially without a clear diagnosis....I would start on safest things like increasing calcium and lowering acidic foods, I would keep trying to find a doctor that tests for IC, and my first alternatives I would try would be the ones forsale in ICN store since they have the most research supporting them. Good luck to you!


                          f post void leaking. The recommended cure for this is to have the child sit backwards on the toilet so that their legs are spread far apart therefor making it much more difficult for the urine to get trapped inside the vaginal area. I've been having her sit backwards on the toilet as suggested, but I still can't fully tell if it's helping. She got a fever last week and strangely enough ever since that happened her average frequency of every two hours has gone down to every 3-5 hours. (She has been urintating about 8-10 times daily with anything from a few hour to a full day episode of urinating every hour) Also since the amount of urinating has decreased, the leaking has started to happen every time she pees. I don't understand why once the frequency she pees went down that the leaking increased. The amount of urine that leakes out is only a matter of drops,
                          Jill, obviously she has more symptoms than post voiding leaking...her frequency and so on. I would say that her current diagnosis is not covering enough. In my experience children don't experience the same pain as adults with chronic conditions...possibly a blessing to them but can't interfere in diagnosis so keep that in your mind while you search for an answer. not that her stomach pain may not be connected just that doctors sometimes expect some very severe pain in IC and I would prefer they didn't always assume that.

                          Good luck to you both!

                          My frirst known symptoms to IC were at the age of 13...that was early and it was impossible to get a diagnosis than...on this board though I have seen all ages so what may be rare is still possible....but so are many other things.

                          The way I see it at her age the muslces that spasm in overactive bladder aren't fully developed so this could be a kid form of over active bladder that in time when her muscles have gained more strength this will end.
                          Faith, Hope, and Love,
                          Katrina


                          I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

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                          • #14
                            IC in children

                            Hi Jill,

                            My daughter went through some similar issues when she was younger and a lot of them resolved over time. She did have a lot of UTI's, though, and even more trips to the doctor that resulted in negative tests. She is 12 now, and the situation has changed. Her main issues are the pain and the frequency. A few months ago I took her to my urogyn. and he had her fill out the IC questionaires, etc. He said that he is fairly certain that she has the beginnings of IC, but he doesn't want to put her through a cystoscopy or start her on any meds at this stage. We are managing her symptoms through diet and relaxation methods.

                            The news both upset and calmed me. I was upset that she might have to go through a life of pain with IC, but at the same time, I have faith that knowing enough about this by going through it all myself will help her get through it. I guess my point is that even if your daughter is starting to show signs of IC (and I am in NO WAY suggesting she is, that is for her doctors to diagnose), you already are taking care of her the best way you can. You know the foods, drinks, etc. to avoid. You know the best way to take care of her routine, clothing, etc. I would keep doing what you are doing, give her support and keep an eye on the situation. If things change, let her doctor know and go from there.

                            Let me know how it goes.
                            All the best for your little angel!
                            Jenny

                            Things turn out best for people who make the best of the way things turn out.
                            - John Wooden

                            ----------------------------------------------------

                            IC, IBS, PFD, CFS-FM, PCOS, RLS, TMJ

                            Wife, stay at home mother of two beautiful girls, former art teacher and architect

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                            • #15
                              Thank you ladies for all your responses. I truly appreciate it. I had to take a break from the boards for awhile. Sometimes I have a hard time on these boards because it's a reminder of things I'd rather forget. I also often get scared.
                              I've since been to UCSF and still feel uncertain of things. The nurse practitioner was really nice but not as helpful as I'd hoped. She also felt it probably was vaginal voiding. She feels that it's not overactive bladder because she thinks that she'd probably be leaking before urination too and having a lot more frequency than she does. She believes that the stomach aches may not be connected as many children complain of such things. I'm still not sure. She's not complained of any issues since in that department. Her voiding frequency is still now within normal range. The only thing that appears to be a problem still is the post void dribbling. The nurse did say that the frequency could have been caused by the irritation on the skin from the urine dribbling. I tend to think not because I would think that it would still be happening. She said that most times these things with kids tend to resolve over time. I still have so many unanswered questions. It's making me crazy. I've been trying to get her to relax on the toilet more. I've noticed that when sitting with her that she will urinate and be done and then about 10-30 seconds later a very small trickle will come out. It appears to be coming from her urethra. I think this would challenge the vaginal voiding because I would think the urine would come dribbling from the lower part of the vagina if it were vaginal voiding. I just don't know what to do. I feel so depressed and anxious over this all happening. I'm an anxious person by nature so this just feels so overwhelming to me. It's one thing to have had to deal with this myself but now to think of my daughter going through anything remotely similar is almost more than I can bear to think of at the moment. I just keep wondering if there is anything else that it could be. Only 4% on the IC population reports having a relative diagnosed so on one hand it seems a possibility and not of things for sure to come. Maybe I'm in denial. It's funny because I remember seeing Dr. Payne at Stanford several years ago and I was discussing my fear of passing this on to my children. I asked him if he thought that there would be some good medications within the next 10 years and he sounded really upbeat and confident about the possibility. It's probably been about 7 years now and it does not appear that any earth shattering drug has been created. I'm not knocking Dr. Payne at all, he's an amazingly compassionate and wonderful doctor. I'm just disappointed and often wonder how many more years it will be before some drug that really helps a good number of the IC population comes to fruition. It would make me feel so much better if I knew that there would be a drug out there that would very likely help my daughter if that was to be her fate down the line.

                              Jen, I was curious when you said your daughter had similar problems at her age and then resolved and now has pain and frequency. Did things totally resolve only to reappear? How is your daughter dealing with it?

                              Thanks again to you all for your support and advice,
                              Jill
                              "Where there is hope there can be faith. Where there is faith, miracles can occur."

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