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Teenagers with IC

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  • Teenagers with IC

    Hi, My name is Lynn, my daughter is almost 13 and is suffering from what the doctors think is IC, i was wondering if there is anyone else on here that has teenage kids with it? I tried to read the thread about teenagers with it, but it's not letting me in.
    Saltire

  • #2
    I'm sorry you still haven't found anyone. If there's an IC support group in your area, you might ask around there for any young people.

    As I told you before, I know it's not the same, but my 12 year old is enthusiatically willing to correspond with her. She has been directly involved in my care, so she gets it as much as anyone w/o IC possibly can.

    But I know there are kids with IC. I just wish I could help you find them. I'll ask my doc if he has any young patients, when I see him in May.
    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

    Comment


    • #3
      HI Lynn, OMG I am so sorry that your daughter is experiencing symptoms of IC! Have you found a good IC dr. for her? That's SO important to get her on the right meds now before the symptoms progress. Starting her on the IC diet right away is a must too...staying away from all the trigger foods.......which must be SO hard for a 13 yr old!
      Best of luck to you and your daughter.....it's not going to be an easy road....Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

      Comment


      • #4
        This would break my heart.. Knowing the pain I have it would be devastating to have to watch my child go through this...(((((((((((hugs)))))))
        Hugs
        Ronda

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


        Link to Patient Handbook:
        http://www.ic-network.com/handbook/

        Diet Reference Sheet:
        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



        ICN 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.

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        • #5
          We do have some teens who come regularly to the IC Network. Hopefully some of them will respond.

          Warm hugs to both of you,
          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
            My symptoms started abruptly at age 16, although I remeber pain in the kidney area and frequency since about age 11. Hope this helps.

            Erika
            IC diagnosed officially via cysto/urodynamics 1/26/07

            Grade II Endometriosis diagnosed via lap 12/11/07

            "Fall down seven times, Stand up eight."

            "Life is a tragedy for those who feel and a comedy for those who think."

            Current Treatments:
            Interstim Since 5/25/07!
            Birth Control

            Comment


            • #7
              Hiya. My name's Kate. I've recently turned 16 after being diagnosed with IC. I'm more than happy to talk to your daughter so she knows she isn't the only one if you'd like being closer in age than most people on this site. This website has helped me so much with advice and friendly people who can relate to what everyone is going through. I didn't know what to do in the beginning. Best wishes x x x

              Comment


              • #8
                Hi I am Jessie I am 16 and have had IC for 2yrs. I would be happy to speak with your daughter. Just email me anytime @ [email protected].

                Comment


                • #9
                  I am a teenager with IC and I am sure my mother post on here sometimes. I have s had symptoms of IC forever but I wasn't diagnosed until the summer before my 7th grade(...I am 15 now); I can seem to imagine how she feels. If you have any questions or want to talk, I would be glad to contact you. I am sorry you and your daughter have to go through this. I wish you the best of luck.
                  IC Awareness

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                  • #10
                    Sending well wishes to your daughter! i cant imagine having to deal with all that comes with IC at such a young age.
                    Hopefully she'll get to a point very soon where her symptoms are managable.

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

                    Comment


                    • #11
                      I'm 18 and I've had IC for less than a year. I've tried all of the treatments except CyA and removing my bladder. I am probably going to start CyA by the end of May. I can help you with questions about IC and school and treatment questions.

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                      • #12
                        I grew up all my life with IC, and wasn't diagnosed till I was 18, at the age of 13 thats pretty rough, and there is a good chance she'll have some problems with depression and anxiety, as that happend to me, as I just hated! having to pee every few min. Some days are better than others, Once in a while, I'll do great, and other days, I'll be in the bathroom for up to 1 hour or more, and keep having to pee over and over, while trying to get to my next class, which was like hell to me, the best to do, is get her diagnosed, and start treatment, the sooner the better, its very rough, for teens to have it. i missed out a lot in my life, like with going out to the mall with friends, the movies, and everything. so treatment, the sooner, is the best.

                        Best of luck,

                        Becky

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                        • #13
                          My IC started about when I was 14. Of course, it wasn't diagnosed & treated for many years. Hopefully your daughter can find a treatment which will help. Resources are so much better today, so it's easier to be informed.
                          IC & fibromyalgia since ~'77. Osteoarthritis since ~'88. Idiopathic Thrombocytopenia Purpura (autoimmune blood disease) since '96. IBS for who knows how long. Interstim implant 2/04, revised 6/06, replaced 11/12 & again in 9/17. Antibodies to thyroid since at least '92 (finally diagnosed & treated 1/06). Asthma & vocal cord dysfunction 12/06. Hypoglycemia '07. Perimenopausal at 37, menopause at 45. Pituitary & adrenal failure. Osteopenia. Grade 3 sacral fracture by S3-S4 at age 12, healed 14mm out of place.

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