Announcement

Collapse
No announcement yet.

5 year old daughter with IC

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • 5 year old daughter with IC

    My 5 year old daughter was diagnosed and started taking Elmiron 3 months ago. I'm wondering if she should be having any lab work. I can't find much about kids and IC. I know Elmiron has not been approved for kids, but her urologist thought it was appropriate for her. She is doing wonderful on it right now.

  • #2
    Re: 5 year old daughter with IC

    I'm so very sorry your little girl has IC. I think it's pretty rare in someone so young, but it can happen. I'm glad Elmiron is working for her. Are you asking about lab tests because of Elmiron? If you have concerns, by all means ask her doctor for an order.

    Managing an IC diet for someone so young has to be a challenge. My youngest son, now an adult, had severe food allergies when he was born so I do understand how difficult managing a special diet can be. He has eczema and asthma. I taught him to use the words allergy and allergic to help him deal with offers of foods he couldn't have (wheat, chocolate, milk products). That might be helpful for your angel to learn --- and since some foods and drinks can cause a physical problem, it could actually be truthfully referred to as allergies. I actually use the same words if someone insists that I have "just a little bit" of something that's a trigger for me. A simple, "No, thank you; I have allergies" is almost always accepted.

    Warm hugs,
    Donna

    P.S. to the IC Network family.
    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


    • #3
      Re: 5 year old daughter with IC

      Thank you...The IC network has helped us a lot in determining what foods to avoid. My daughter is such a picky eater, but she has been so good about understanding that certain foods bother her. I don't know that I would have understood that I couldn't have chocolate at her age.

      Comment


      • #4
        Re: 5 year old daughter with IC

        I'm so sorry to hear about your daughter being diagnosed with IC so young. I was not diagnosed until 22 but likely had IC as a child. So glad to hear the Elmiron has begun to help her, it has really helped me too. Insofar as labs go, I personally never had a problem. Of course, always talk to your little one's Doctor to be sure.

        With regards to diet, please remember not everyone is sensitive to all the things on the diet list. The best way to find out is to follow the elimination diet until flares subside and introduce an item here and there. I also find that when I am in periods of remission that I can have items on my not to list every now and again. Moderation is key. I just don't want you or her to think she can never eat all the things on the list again!

        Also as a fellow IC patient when I was a child, please, please be sure to get a note for her at school and have all the teachers aware that she has a free pass to the bathroom whenever she needs to. I was flat out told to hold it as a kid and it was unbearable. They of course did not know better then. So thank goodness you have caught this early enough to advocate for her in such a way!

        Warmest regards to you and your daughter. You'll find a way to make it all work for the best in no time!
        Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

        Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

        Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

        Comment


        • #5
          Re: 5 year old daughter with IC

          oh no. poor thing. I'm so sorry that she has been diagnosed, and that your family now has this as part of your lives. HUGS
          ----------------------------------------------------
          My blog on IC, adoption, and academia: the garlic whisperer

          Diagnosed Jan 2013. Currently taking:

          200mg Elmiron morning and night
          25mg Elavil at night (no drowsiness or weight gain)
          culturelle in the morning
          SLIT drops for allergies (environmental) 3 drops/night under the tongue
          zyrtec 24 hour nightly (recommended by uro)
          Instillations 3x/week: Parson's Solution
          uribel and prelief as needed

          Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
          No longer need them, so I only take them during flares.

          Comment


          • #6
            Re: 5 year old daughter with IC

            It is recommended by the manufacturer of Elmiron to have bloodwork done once/year to check liver enzymes/function. While its rare, Elmiron can cause liver issues. On the plus side, if that happens to be an issue simply lowering the dosage typically resolves the problem.
            I was on 900mgs 3x/day when I was first rx'd Elmiron (remained on that dose for 6 months) and had no issues with liver function/elevated enzymes.
            You're her advocate so if for nothing else but peace of mind by all means ask the Dr what s/he recommends.

            Hope your daughter is doing well!

            Diana
            (\__/)
            (o.O )
            (> < ) This is Bunny. He's on his way to world domination.

            Comment


            • #7
              Re: 5 year old daughter with IC

              Originally posted by Malsmom1 View Post
              Thank you...The IC network has helped us a lot in determining what foods to avoid. My daughter is such a picky eater, but she has been so good about understanding that certain foods bother her. I don't know that I would have understood that I couldn't have chocolate at her age.
              When my son was small, I bought carob bars for him and he loved them. I had a cookbook put out by the American Dietetic Association that helped me a great deal. It had sections with recipes without specific ingredients. I don't know if they still do a similar book, but it might be worthwhile.

              His school was very good about providing treats for him when other children had some. I found if I kept a positive outlook, he also was positive. It's not easy sometimes, but you can do it.

              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


              • #8
                Re: 5 year old daughter with IC

                Sorry you have to deal with this.

                Two of my kids were on very strict diets when they were young, I just made everything they ate at home, I got the school to let me know if there was going to be a party etc and I would make something they could eat and send it. When they went to Bdays parties they took their own cake, they just dealt with it very well.

                I have a very easy recipe for a treat you can make her to fill that treat void.

                1 cup butter
                1 cup coconut oil
                1 teaspoon vanillia

                Place in a microwaveable bowl, microwave for 2 mins at about power level 7, you want indigence very soft, or liquid, remove from microwave and mix with a mixer on a low speed, you are not trying to whip this, it should be very runny.

                Add 1/2 of Birds eye custard
                Add sweetener of your choice, you can use Splenda if you can't have sugar or plain white sugar if you can eat it. I don't have a measurement for this because it depends on your choice of sweetener.

                You can add anything to this mixture that you know she can eat, I add unsulfered coconut ribbons, very hard to find, I get them in health food stores, it is coconut that is just dried, it has nothing added to it. But it could be nuts, or a cereal, etc. I also add Chia seeds, flax seeds, hemp seeds, so I get something good for me when I eat it. I add about a 1/4 of a cup of each of these things, but the coconut I add about a cup. Cereal could be a cup. Basically this can be any mixture of any thing you want to add to this.
                Add this mixing on slow and only mixing until mixed into mixture.

                I then put parchment paper on a lg cookie sheet or 2 small cookie sheets, you could also use wax paper, or spray pan with Pam or cover with butter, something so it doesn't stick to the pan.

                I then pour this liquid mixture on to pans.

                Then put pan into freezer, after a couple of hours, remove from the freezer and break into pieces, put into a container or freezer bag, and keep in the freezer.

                Eat as soon as you take it out of the freezer, this makes like a chocolate bar.

                You can also make it with an organic coco to make a chocolate bar, I find I can eat this without problems as it doesn't have any additives or preservatives. Also if you wanted to try the chocolate you could try it with less coco to start with, just use things that have lots of flavor for the things you add to it.

                Good luck MG
                My are with you all. May you all find a way to peace and joy in your lives.

                Comment


                • #9
                  Re: 5 year old daughter with IC

                  Hi there! And welcome to the ICN Forum! I am sorry your daughter has been diagnosed with IC, but it is great she has begun treatment to feel better!

                  YES! Dg2901 (Diana) is correct, and was the point I was going to make; for the health of your daughter's liver, she should have bloodwork done because she is on Elmiron. I have it done every 6 months, but because she has only been on it for what is now four months, just remember to put it on your to-do list down the line; when I was diagnosed as a child, Elmiron was the first drug I began, and I have never had any worrisome bloodwork results since beginning Elmiron 10 years ago.

                  I am familiar with children as young as four being on Elmiron, but you are right; unfortunately, as much as IC goes unrecognized, children with IC are further unrecognized whether it is research or advocacy. However, when I was first prescribed Elmiron, it was not a concern whether it was approved for children or not because I was the 19th child in New England to diagnosed, so we did not expect much knowledge of the effects on kids, even more urologist did not believe children could have IC than today, and Elmiron is one of the least invasive treatments for IC. I think the most important question to ask when wondering about Elmiron is, "Does it provide my daughter relief? And does it improve her quality of life?"

                  If you live in the New England area, and would be interested in a second opinion or to consult another doctor, I can recommend a very knowledgeable pediatric urologist.

                  I hope that helps, and please do not be afraid to ask anything! You are going to be the advocate for your daughter! Best wishes.
                  Tierney
                  Message me and add me http://facebook.com/tierneybrielle.

                  Diagnosed with IC at 12-years-old, but have had IC much longer, now 24-years-old - fibromyalgia (diasnosed 07/30/12) - CFS - migraines - diagnosed with myofascial pelvic pain syndrome in January of '12 - scoliosis since ~12-years-old & s/p spinal fusion (06/21/10) T10-L3 w/ metal implants & nerve damage - post laminectomy syndrome - lumbar spondylosis - mild dextroscoliosis now - menorrhagia and dysmenorrhea (both controlled) - IBS - chemical sensitivity - allergies - chronic nose bleeds - heartburn - rosacea - and that is just the relevant stuff

                  Do you have a question? Feel free to ask me anything; I am an open book!

                  I am not a medical authority; I do not offer medical advice. Talk to your doctor, and if you are not comfortable talking to your doctor, find another one. It is OK to advocate for yourself as well as not be satisfied with your doctor! You deserve the best medical care.

                  Comment


                  • #10
                    Re: 5 year old daughter with IC

                    Hi Malsmom1,
                    Are you still checking this forum? My daughter is also 5 and though she hasn't been diagnosed with IC, she has most of the sypmtoms of urethral syndome which I guess can be related to IC. She had two rounds of antibiotics for UTI and then still has sypmtoms but no infection/clear urine. I realized after the antibiotics were done that she was still really uncomfortable and then tried to zero in on her actual symptoms. She has burning in her urethra and spasms that radiate throughout her pelvic region. The only relief she has had is giving baking soda, calcium carbonate or molasses. I have also removed many IC triggers from her diet and sugar. She had an ultrasound today and I am waiting for results which I expect to be normal. I guess we will then be referred to a urologist. I was wondering if you would be willing to share whether or not your daughter had a diagnosed UTI and antibiotic treatment before developping IC? My current theory is that my daughter's urethra is infected with either a bacteria and fungus which is causing the burning sensation and spasm. I did a bunch of research on the internet and noticed that the IC condition is remarkably similar to H pylori where the bacteria burrow into the lining of the stomach and secrete ammonia which disrupts the mucous lining in the stomach. Then the stomach acid eats away at the wall of the stomach. I am wondering if something similar happens in the urinary tract. Anyways, I've ordered the book called the Along the
                    Healing Path and am going to see if there is a way to determine if there is bacteria/yeast in my daughter's tract that wouldn't necessarily show up on routine urinalysis. It makes me sad that this issue might not get as much attention as it should because it is mostly a female issue.

                    I hope your daughter is feeling well. It has been a rough road for us and I am now realizing that we might just have a long road ahead of us as well. Cheers!
                    5 1/2 yr old daughter with burning sensation after UTI and 2 rounds of antibiotics. Not diagnosed with IC but has some symptoms (food senstivities, burning sensation (not when peeing), leukocyties in urine with negative culture)
                    Natural Treatments Only
                    Food plan: Mainly IC diet, low sugar, no gluten, no preservatives, free range or pasture raised meat only, organic where possible
                    Supplements (low dose): D-Mannose, magnesium/calcium, buffered vit c, high strain probiotics
                    Starting physiotherapy.

                    Comment


                    • #11
                      Re: 5 year old daughter with IC

                      I very much hope your little one does not have IC. But if she does, it will be best to know so she can be treated.


                      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


                      • #12
                        Re: 5 year old daughter with IC

                        My daughter had 3 UTI's showing bacteria that was unusual for her age. I took her to a Urologist because she was still having symptoms, but her cultures were coming back fine. She was in so much pain. The Urologist decided to perform a cystoscopy. He took several pictures of her bladder which was bleeding. He instilled 4 medicines in her bladder and started her on Elmiron. He also informed me of the IC Network. We immediately started following the IC diet. The response was amazing. This was in August. She has recently had a UTI. She finished her meds and we did a follow up culture. She had Nitrates, but no bacteria grew. She is still having symptoms so now the Dr has ordered another test to check for urine reflux. It is an ongoing battle. I hope you get answers for your daughter!

                        Comment


                        • #13
                          Re: 5 year old daughter with IC

                          My daughter also had an ultrasound that was negative prior to her diagnosis. Also, my Urologist always sends her urine for a specialized culture.

                          Comment


                          • #14
                            Re: 5 year old daughter with IC

                            Thanks. I live in Canada and I feel like they only do routine urine analysis. We are still waiting for results but my daughter had leukocytes in her urine again today and I am hoping that she doesn't have another UTI because I feel like the antibiotics caused the other issues. As I was typing this she told me she had pain in her back. Sent me in a total panic because I can't get her in to see the doctor again until Thursday when they have her culture results. I guess all I can do is get her to drink more water. I am truly sympathetic to you and your daughter. Thinking about her bladder bleeding makes me cringe. I hope she goes back to healing again. It's a lot for a little girl to handle and you too. Unless my kids are OK, I can't be OK. Thanks for taking the time to reply. I truly appreciate it.
                            5 1/2 yr old daughter with burning sensation after UTI and 2 rounds of antibiotics. Not diagnosed with IC but has some symptoms (food senstivities, burning sensation (not when peeing), leukocyties in urine with negative culture)
                            Natural Treatments Only
                            Food plan: Mainly IC diet, low sugar, no gluten, no preservatives, free range or pasture raised meat only, organic where possible
                            Supplements (low dose): D-Mannose, magnesium/calcium, buffered vit c, high strain probiotics
                            Starting physiotherapy.

                            Comment

                            Working...
                            X