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  • child email pals

    Looking for another child about my daughters age, 11, to email back and forth with her. She is struggling mainly with pain from IC. Every day she says, "I just wish I could have one day without the pain". We are using Ibuprofen for her, but she says it does not really help. Next dr appt we will ask for other suggestions. I am taking Oil of oregano for my pain and it works wonders. I will try it on her next week. I know she would feel better if she didn't think she was the only kid with this problem. Jr. High next year will be an issue too with as long as she takes in the bathroom. She feels better when she sits so she is not very active. She also has a twisted tibea bone in her lower leg so she does not run like other children either. If anyone knows of a child who would like an email pal please let me know. Also anyone with any suggestions about dealing with this problem in children feel free to answer. Thanks,,,,
    Leanne and Kelsey

    My symptoms started age: 15
    Have had re-occuring bladder inf. some positive, some negative. Years of unnecessary antibiotics.
    Finally diagnosed with IC age: 40
    I work full time and I am a mother of 6 actually, twins of my own and 4 children from my husbands first marriage. He has a set of twins also age 10. All together 5 girls , and one boy


    Daughter age: 11 years old (one of twins)
    Diagnosed with IC in May of 2007 after I finally convinced the doctor that her syptoms were like mine. Doctors don't think this happens in young children. Cysto and Hydro showed she has IC.


    Meds:
    Elmiron- 3x a day (dont think it's really working)
    Deterol- once a night every other day
    Trying Oil of Oregano- suggested by chiropractor
    (50 mg, twice daily) (has taken my pain away, no more need for Ibuprofen)

  • #2
    Hopefully someone with a child with IC will respond.

    Ibuprofen is a problem for many with IC so you might want to talk with your doctor about a different alternative.

    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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    • #3
      I hope you find someone to e-mail your daughter. My heart breaks just thinking of her having to go through this at such a young age. I can't even imagine. And as a Mom, I can only imagine how much it breaks your heart to see her having to deal with this. I hope you find someone soon, it will be really good for her to have someone close to her own age to share and talk to about it. Then she won't feel so alone and like the only kid in the world that has this, you know? Where do you get Oil or Oregano and how much are you taking? I hope it helps your daughter also.

      Kari
      Kari

      I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

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      • #4
        There is a member here, her user name is Saltire, who has a 12 year old daughter with IC. Maybe you could PM her. I know she posted something under "Teenagers with IC," but it was more than 30 days ago, so when you go into that forum, you have to change your viewing options (which will be below the list of threads in the forum).
        Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
        Wishing you happiness and good health, and all the best out of life.

        Peace, Carolyn
        ___________________________________________________

        Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


        On the Beach with IC

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        • #5
          Ibuprofen is very unfriendly for me. I agree with donna about finding something else.. what about urised, it is an anti spasm andhas numbing agent in it. also a low dose of hydroxizine.
          sending you big hugs
          'The will of God will never take you where the Grace of God will not protect you.'

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          • #6
            Sorry that your daughter has to go through all of this. I'm 17 (so a bit older than your daughter) but if she ever wants to e-mail or IM she's more than welcome to. My IC started at around age 13/14 but didn't get really bad until I was 15.

            My e-mail is [email protected] (aim is MerryBerryMoose).

            ((hugs))
            -gabby

            Medical "Issues":
            IC
            GERD
            Tachycardia(resting rate is 125-130 )
            Medicastions:
            Tramadol-as needed (IC)-50mg
            Elmiron 200mg twice a day
            Levsin .125mg 1-2 pills 4 times a day

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            • #7
              I'm 19, almost 20 and I also have IC... my symptoms started around age 14 and I was diagnosed at around 15. If your daughter ever wants message me she's more than welcome. My AIM is chinesecrstdlvr

              Oh, and Merryberryrose, your list of illneses seems eerily like mine!
              current meds:
              cytotec 200mcg twice daily
              toprol
              allegra

              ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

              dx: hashimoto's thyroiditis 1998
              dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
              dx: endometriosis 2003
              dx: innapropriate sinus tacchicardia 2005

              meds tried but failed:
              elavil (6months)- severe tachycardia
              elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
              a bunch of others



              Me and my best friend's baby (also my Godson!)

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              • #8
                16?

                I am sixteen and developed symtoms at 13... I am willing to talk to her about it...but hopefullly you will be able to find someone closer to her age. I havent seen any but maybe there is someone out there in the IC community..
                Laura

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                • #9
                  OOOOWH!!! Ibuprofen is a no-no!! It is common of ICers to have problems with it. You may want to talk to your doctor about other options for pain killers. I know it is positively brutal for me to take Ibuprofen.
                  ANyways, I am sorry your daughter has IC. I have had IC as long as I can remember. I was diagnosed when I was 12 and I am currently 15. I know what its like to feel alone. I mean...IC seems like such a rare disease, and in addition, it seems like there are only "old people" (as I once described it) who are suffering from it. Although I am a bit older than your daughter, feel free to contact me. Because I have suffered from IC, I at least know what it is like to be her age. My e-mail: [email protected]
                  My name is Tierney. If you or your daugter have any questions or just need to chat e-mail me anytime.

                  (P.S. Please be careful. Keep in mind that you don't really know who you contacting. We could be anyone for all you two know; just remind youself and your daughter not to reveal personal information because you don't even really know for a fact, that we are all actually ICers.)
                  IC Awareness

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                  • #10
                    eek!

                    Ibuprofen KILLS me!!
                    Lee Ann
                    Current Rx Meds:
                    Atarax, Ditropan, Elmiron
                    Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
                    Hooray for babies!
                    Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
                    Didn't work for me:
                    Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
                    IC (Mod-Severe) since 1996

                    UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


                    My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

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