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  • My daughters Nephrology appt.

    We took my 10 year old to a new nephrologist Tuesday. Logan was born with renal stenosis (blocked artery to her kidney), Severe pulmanary Hypertension, poor heart contractility. She started showing signs of kidney trouble with an increase in blood pressure. THe new Dr was amazing. After reading her birth history APGAR'S of 1 & 4, full cardiac arrest at 4 hours old, 31 days on ocillators and vents. He has been the first Dr to tell us there is no scientific reason for this child to be alive. That hit home!!!!! I knew she was bad and I knew that the Dr had told me several times that they had exhausted all the could due for her at birth and she pulled threw anyway. We are repeating her renal scans, kidney U/S, all her kidney function bloodwork, and returning to him in 6 weeks to figure out a game plan. He is having her BP monitored at home by my neighbor to see if he should do the BP meds again. He was hoping maybe it was white coat syndrome that it was high on this visit. This Dr was stunned that this is in my family. My grandma, my mom and Logan. He was also more stunned that my, my mom, her sister all had IC. He is wanting to do some major reasearchon this.

  • #2
    I know what you went thru with logan, and the baby pictures were heart breaking... You know 24/7 we have a direct connect.

    I really hope that people statrt looking into IC running in families, I have so dose my mom and my aunt, and 2 cousins on my moms side...
    'The will of God will never take you where the Grace of God will not protect you.'

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    • #3
      Oh wow Leslie! Firstly sounds like you have a great new doc, wow. And secondly what a piece of information to hear huh? Wonder what she's destined for... It's got to be something great!!!!

      I am learning more and more about kidney function than I ever thought I'd have to, lol. And to top it off my hubby was born with his kidneys fused together so, it's like a horseshoe shape and they are in the front part of the abdomen, where'd they be in the back...ugh

      I appreciate you sharing your info, the more I learn and know about the better! Sounds like you all might come under the microscope eh?
      Hugs,
      Tracey
      How do you eat an elephant? One bite at a time...

      Harry arrived 2/23/09!



      *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.

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      Dx's:
      IC dx'd Nov 2004
      Lymphocytic Colitis dx'd July 2005
      Possible IBS
      Current IC Meds
      Vistaril 25mg in the evening
      Previous IC Meds taken:
      Cystoprotek - 2 caps 2x's a day
      Elmiron, 100mg 3x's a day
      Ditropan, 5 mg 3x's a day
      Others:
      Wellbutrin 150mg 2x's a day for Anxiety/IBS
      Pepcid 40mg a day for GERD
      Zytrec for Nasal Allergies
      Align Probiotic daily for IBS

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      • #4
        WOW what a mircle child to have. A true gift from god. And I am glad she seems to have such a wonderful new doctor
        God grant me the serinity to withstand the days ahead!!!

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        Patricia

        In Memory of My Father (Lawerence) 1/25/2007

        Procedures:
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        1st InterStim Removal May 2005
        2nd Interstim Implanted May 2005
        2nd InterStim Removed March 2007
        Hysterectomy 1999
        Tubes Tied 1997
        C-Section 1996


        Me and my kids


        Taylor (my daughter) Me and my daughter My son Cody and Taylor

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        • #5
          I agree.....what a miracle child of God.
          He placed that baby in a wonderful family with an awesome mommy

          It sounds like your doctor is pretty awesome also.
          Miss Bessie

          Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

          Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

          Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

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          • #6
            I'd have to agree. You are truly blessed.

            Donna
            Stay safe


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            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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            • #7
              I'm w/them, ya got a miracle!

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              • #8
                I used to work in the NICU and she really is a miracle baby! Please let us know how her bp is doing and how she's feeling. I'm glad that you got a great new doctor for her who is so interested in the entire family history! That is fantastic. Please call if you need a shoulder, ok?
                *IC-- Summer 2004; PFD--October 2005
                *Fibro--Fall 2000; CFS-- Fall 2000
                *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                Total Abdominal Hysterectomy--adenomyosis--9\08

                04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

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                • #9
                  Thanks Ladies, Great Sandy I may just be calling with ?'s

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                  • #10
                    What a true blessing that sweet child is! That is amazing. So glad you have such an awesome doctor.

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                    • #11
                      My heart breaks for you........it's amazing what children can go thru and thrive in the long run. Having a child in NICU is so scarey. I really love stories like this. When they are older and doing well.
                      What a sweet, sweet girl.
                      You know I'm partial to miracle babies anyway. We have one of those who just turned five.
                      I hope she has continued good health with her bp numbers......hugs to her and you!
                      Tons of support,
                      Jaime

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

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                      • #12
                        How is your daughter doing now Leslie?
                        *IC-- Summer 2004; PFD--October 2005
                        *Fibro--Fall 2000; CFS-- Fall 2000
                        *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                        Total Abdominal Hysterectomy--adenomyosis--9\08

                        04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

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