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newly diagnosed 11 year old

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  • #16
    My son, 12yrs old, has been suffering with IC for the past 5 years. We see Dr. Parsons in San Diego. He has only been taking one Elmiron a day for the past year and a half. He is better...not 100%...but better. We did have him on two a day...but he had some side effects. Diet plays a huge role for him. And I am now starting him on a Alkaline based diet along with Fish Oil and Colostrom. He gets a big glass of freshly juiced green veggies (that I make at home)everyday that he comes home from school...he complains to high heaven every single day...but it helps him alot...so I insist!! I haven't tried other meds or alternative therapies for him...but will if he ever gets worse. My own case of IC is manageable...Most days

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    • #17
      Good luck! It is great that you found a specialist in high regard and have found a plan to help!
      It must be hard to watch your son go thru this. Blessing to you both!
      Joslyn
      IC symptoms in May 2011
      Mild IC dx by Cysto July 2011
      Symtoms decrease 80% by September 2011!






      Tums 100mg
      fish oil 3-5 grams
      Probiotic 5 billion
      Magnesium
      Bladder Ease
      Unda Drops
      Mediclear Plus Protein Shake

      Physical Therapy Graduate!
      Meditation 2x a day
      Running
      Castor oil pack
      Teas (nettle leaf, linden flower, camomile, marshmellow root)

      Have tried
      In office instills (pridium, heprin, lidocain, elmiron)
      Cystoprotec
      Desert Harvest Aloe
      atarax 25 mg
      Vesicare
      Lexapro
      5HTP
      sanctura

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      • #18
        Here we go again!

        The doctor says that IC is not genetic....but I don't know what to believe. My oldest daughter who is now 20 was diagnosed at 16 with IC. My 2nd daughter started saying she thought she had it too at the age of 13 (she is now 16) she even kept records of what she ate and when she had pain. Now my next youngest daughter (currently 12) has been complaining of bladder pain as well for over a week!

        We can't get an appt with the urologist (3 hours away) until the 19th of July, since she is a new patient. The Dr. treats the other 2 daughters. When I took my second daughter in to get some testing done he was sure she didn't have it but did the dystention just to rule out IC....he came out dumbfounded, shaking his head saying I can't believe it...I have never had siblings patients with IC!! My oldest daughter was only his 4th patient in 35 years to be under the age of 20 to be diagnosed with IC.

        I want to know if there is any way - test, etc.- that could be done to see if it is in fact genetic. (We could be a testable family I think) I do not have any symptoms, nor have I ever had any problems with my bladder. Their Dad was killed in 2003, so I don't know if he would have developed the symptoms or was a carrier. His parents are also deceased. The girls' Aunts and Uncle on their Dads side don't have symptoms or children with it. None of my family members have it either.

        My oldest takes Elmiron, my 2nd daughter can't take Elmiron because it raises her liver levels so she is on Urelle. Is IC brought on by hormone changes or is it aggravated by them?

        Im desperate for information! Any and all could help.
        Thanks

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        • #19
          There was research going on several years ago which involved studying IC cases that involved more than one family member. I haven't seen reports of their results.

          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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          • #20
            Hi,

            I don't think it's thought to be highly genetic, but that definitely seems to be the case for some of us. I have IC and my 7 year old daughter has IC. I've definitely seen some troubling signs with my almost 4 year old son too:-( One of my sisters has very mild IC I believe too. I don't know of any other history of bladder problems in either branch of my family outside of this though. I took my daughter to see Dr. Parsons at UCSD who has been one of the big key players with IC in years past. His own research has showed a much higher incidence of IC amongst family members than other studies. Since I have IC, he was not surprised in the least that my daughter was showing signs. There is some current research going on with genetics and IC at Boston Children's Hospital. (part of the MAPP Study) They especially are interested in enrolling families with clear genetic ties with IC. If interested, you might enroll your family. I think they are still accepting families.
            If you don't mind me asking, how has your other daughters responded to treatment? My daughter is on Atarax along with diet and seems to do okay on that. I didn't think Elmiron did all that much (although it's hard to gauge a 7 year old completely) I have always been curious if those of us with a more genetic IC respond to certain types of medications better.....(assuming that IC may actually represent different disease processes in various individuals.....)
            Oh, and yes, hormones definitely play a role in IC so it seems to appear for many....

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

            Comment


            • #21
              Please have your daughter try Prelief. This product has been a God-send to many of us. There are some amazing review on Prelief's web site, and several of them are from people with IC. Take a look for yourself:

              http://www.akpharma.com/prelief/testimonials.html

              Comment


              • #22
                Thank you all for responding. JVR-My oldest (20) does take Elmiron and it seems to be working fine for her. My 2nd (16) was taking Elmiron, but had to go off of it because it was pushing up her liver levels too high. The Dr. hasn't suggested Atarax but I will ask him next visit about that. But she has been taking Urelle which mostly controls spasms in the bladder - that and along with a supper strict diet is keeping her afloat and pain free. I just took my 3rd daughter (12) in to a regular Dr. and they did all kinds of tests that showed nothing abnormal..bummer. So it is looking like we will have another one with IC. I will look into Dr. Parsons project...it sounds interesting and we would be good candidates for it.
                Tuckersmom-thanks for the advice on Prelief. It does seem to help her the last day.
                I have also contacted Dr. Oz-I know it seems silly but I just want to get word out there about IC - how else do we do it??
                Thanks for your responses and I will keep you all posted.

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