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G TUBE PROBLEMS WITH SPASTIC QUAD CP MIRACLE CHILD

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  • ALMA
    Hi, I wanted to find out if other parents are/were experiencing the same issues or problems whose child has a g tube. My daughter Alana who is 2.5 just got
    Message 1 of 3 , Oct 2, 2006
      Hi, I wanted to find out if other parents are/were experiencing the
      same issues or problems whose child has a g tube. My daughter Alana
      who is 2.5 just got the g tube (with a Mickey button) because of her
      poor weight gain in the last year. Note that we did not get the
      fundoplacation done as her GI did not think her reflux was bad. She
      is between 18-19 pounds. My miracle child was a former preemie, 25-27
      weeker, that was in the NICU for 3.5 months. In the NICU, she
      suffered RDS/BPD, IVH 3 with mild PVL, a stroke, NEC, sepsis, and 2
      kidney failures. The consequences of her prematurity are CP, CVI,
      FTT, global delays (mostly physical; not crawling, rolling
      consistently, standing and walking yet).

      Prior to the g tube her problems besides her poor weight gain included
      trouble chewing and swallowing food larger than cereal and sleeping
      through the night consistently. After the g tube, we have extreme
      irritability, intolerance of continuous pump feeds with the rate of 45
      or more, granulation tissue at the g tube site, and more sleep
      awakenings. Her extreme irritability is unlike her because before we
      could easily console her. Now, especially during therapies she cries
      hard half the time, and cries for long periods if she is in the
      presence of new faces. I cannot leave her alone with new faces as she
      will cry then throw up her food. I am thinking that she is acting
      like the terrible two syndrome with separation anxiety and just being
      picky and clever in manipulating situations where she does not want to
      perform (like therapy). In regards to the pump feeds, I supplement
      her food intake with the pump. She takes 14-18 oz of Pediasure by
      bottle, then I am supposed to supplement 6-13 oz by gavage feedings by
      the pump. Right now I am experimenting with night feeding with the
      pump 6 oz at 25 cc per hour. So far so good and I plan to increase
      gradually. Does anyone have similar experiences or input? Oh, the
      sleep problems got worse when we got the g tube. Before she has
      periods where she would sleep through the night with minimal
      awakenings where she can be easily comforted back to sleep. Now, she
      wakes up 2-4 times fussing, with one of them being a major crying
      session that cannot be consoled. After changing her diaper, offering
      a bottle, and trying to figure out what else may be bothering her, I
      even tried letting her cry it out. Well, she has the tenacity to cry
      a straight 30-45 minutes. I consulted with her neurologist who told
      me to get Dr. Ferber's book and or consult with a child psychologist
      that could help with the sleep issues plus her extreme irritability.

      Please help!

      Thank you,
      Alma at liliocat@...
    • ALMA
      Hi, I wanted to find out if other parents are/were experiencing the same issues or problems whose child has a g tube. My daughter Alana who is 2.5 just got
      Message 2 of 3 , Oct 2, 2006
        Hi, I wanted to find out if other parents are/were experiencing the
        same issues or problems whose child has a g tube. My daughter Alana
        who is 2.5 just got the g tube (with a Mickey button) because of her
        poor weight gain in the last year. Note that we did not get the
        fundoplacation done as her GI did not think her reflux was bad. She
        is between 18-19 pounds. My miracle child was a former preemie, 25-27
        weeker, that was in the NICU for 3.5 months. In the NICU, she
        suffered RDS/BPD, IVH 3 with mild PVL, a stroke, NEC, sepsis, and 2
        kidney failures. The consequences of her prematurity are CP, CVI,
        FTT, global delays (mostly physical; not crawling, rolling
        consistently, standing and walking yet).

        Prior to the g tube her problems besides her poor weight gain included
        trouble chewing and swallowing food larger than cereal and sleeping
        through the night consistently. After the g tube, we have extreme
        irritability, intolerance of continuous pump feeds with the rate of 45
        or more, granulation tissue at the g tube site, and more sleep
        awakenings. Her extreme irritability is unlike her because before we
        could easily console her. Now, especially during therapies she cries
        hard half the time, and cries for long periods if she is in the
        presence of new faces. I cannot leave her alone with new faces as she
        will cry then throw up her food. I am thinking that she is acting
        like the terrible two syndrome with separation anxiety and just being
        picky and clever in manipulating situations where she does not want to
        perform (like therapy). In regards to the pump feeds, I supplement
        her food intake with the pump. She takes 14-18 oz of Pediasure by
        bottle, then I am supposed to supplement 6-13 oz by gavage feedings by
        the pump. Right now I am experimenting with night feeding with the
        pump 6 oz at 25 cc per hour. So far so good and I plan to increase
        gradually. Does anyone have similar experiences or input? Oh, the
        sleep problems got worse when we got the g tube. Before she has
        periods where she would sleep through the night with minimal
        awakenings where she can be easily comforted back to sleep. Now, she
        wakes up 2-4 times fussing, with one of them being a major crying
        session that cannot be consoled. After changing her diaper, offering
        a bottle, and trying to figure out what else may be bothering her, I
        even tried letting her cry it out. Well, she has the tenacity to cry
        a straight 30-45 minutes. I consulted with her neurologist who told
        me to get Dr. Ferber's book and or consult with a child psychologist
        that could help with the sleep issues plus her extreme irritability.

        Please help!

        Thank you,
        Alma at liliocat@...
      • Debra Marasco-McNulty
        Hi Alma, You indicated that she had a fundoplication, did she have an emptying study done prior to surgery? Because if the stomach is not emptying properly a
        Message 3 of 3 , Oct 2, 2006
          Hi Alma,

          You indicated that she had a fundoplication, did she have an emptying study done prior to surgery? Because if the stomach is not emptying properly a pyloral plasty should have been done. The children I knew who had problems like what you describe had that problem, increased intake caused stomach pains which the child can only express with irritability and awakening at night. I was fortunate that when my son had his surgery almost 22 years ago, his doctor was one of the team that developed the procedure; he was aware that emptying problems was one of the main causes of "failure" of the procedure.

          Granulation and inflamation at the stoma sight are common after new surgeries. What I have learned by the "seat of my pants" is that use of neosporin (or generic Triple A antibiotic) ointment around the site then put a piece of gauze between the MicKey and the skin, anchor with a bit of tape, as this will decrease the rubbing. If there is a large amount of granulated tissue, some may have to be removed by using silver nitrate, some parents do this at home, or the doctor can do; but I would do the ointment routine now.

          Irritability or shying away from new faces is a common result of a hospitalization, and especially in younger ages. Eventually she may grow out of it as she learns to trust new people in her life as she finds out not all people will stick and prod her.

          Hope this helps, if you need anything you (and others) are also welcome to email me off-group or call me.

          Debra M-Mc, mom of 30 yr old Jason, micro-cephalic CP, spastic quad, g-tube and trach. - debraphp@... or 805-238-9576 (California)


          ALMA <liliocat@...> wrote:




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