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Re: [mitochondrial] Re: Reflux, seizures, etc.

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  • Stacimom@aol.com
    In a message dated 3/31/99 10:38:00 PM US Eastern Standard Time, BzyHeidi1@aol.com writes: ********Then Kate-Stacimom@aol.com answers:***************
    Message 1 of 1 , Apr 1 12:24 AM
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      In a message dated 3/31/99 10:38:00 PM US Eastern Standard Time,
      BzyHeidi1@... writes:
      ********Then Kate-Stacimom@... answers:***************
      <<
      From: BzyHeidi1@...

      Hi, just wanted to add some about the reflux and ask some questions. First of
      all- I don't know what is right but I do know all the doctors here have told
      me that the tube cause reflux and that they will not do the tube surgery
      without the fundoplication. I am in Kansas City and that is what they do here
      if that helps.
      *****************Many\most of the gt docs are for fundoplication with a
      tube, or at least they offer it. Staci was offered it. We declined, because
      she wasn't having excessive reflux--it was more due to an energy and time
      problem, including that when she was sick she wouldn't drink from her bottle.
      Want to start a vehement discussion on the gt list? Bring up the topic of
      fundos. We had friends whose child had CP, from a birth accident that earned
      her a whopping lawsuit and settlement....they offered to pay for their neuro.
      doc. to tell us how bad fundos were if not strictly warranted. Wow, it's just
      over 2 yrs that she had the gtube--the day after her adoption was
      final......and yes, she does have a tad more reflux, when she's sick, or gets
      overfull. Her gt meds are over an ounce, 3 times a day, so we have to use
      formula to flush the tube, and then stop the feed for at least half an
      hr..**********

      Also I met with the surgeon on Monday regarding doing a fundoplication on my
      son. He is 3 yrs old and has reflux about 20 times a day where it comes out
      and who knows how many where it doesnt. But it is disgusting and making me
      miserable. He doesnt act like it even phases him. As a matter of fact he
      laughs.
      ******Sounds like you're doing the right thing with the type of fundo....never
      know with that durned reflux when they'll inhale it, and get aspiration
      pneumonia. Thank God Staci's never gotten it....We have a suction machine
      here, for both yankauer suction handle and nasotracheal suction. I'm an RN,
      but it was a challenge doing it on my own child. But, after her first
      experience of hurling allover her face, and not being able to suction it
      out,just using gravity turning her arse over teakettle over a large pile of
      pillows on the changing table, and having to call the paramedics...They
      couldn't suction her, because her bases of the lungs were clear. Good work on
      mom's part, but she could still be heard from the doorway. The Chest Xray was
      ok. No pneumonias...yet. ***********

      He was on zantac and propulsid, then prevacid, then prilosec
      ***************Staci's still on Prevacid. So am I . ********

      off propulsid when diagnosed with mito because of the heart defects it has
      caused, and the dr. said with mitos risk of heart problems he shouldnt be on
      it).
      *****************The risk of heart problems is high--it can cause a widening
      of the Q-T interval on an ekg--representing the time between the contraction
      of the heart muscle, and its repolarization, or building up the ability to
      beat again. During this time, the heart is susceptible to a stray beat,
      called a PVC, starting the dreaded VTACH, or VFIB. During her last hosp.
      admit, Staci had a baseline ekg, which was ok, but her gi doc said NO
      Propulsid...to many problems.*********************

      My son eats great and doesnt need a tube so he will have the fundo alone. Not
      the Nissen (full) but the partial so he will still have the ability to vomit.
      I have gone back and forth about this surgery for a long time and not wanting
      to do it but Bailey is now loosing weight because of it and nothing else
      works. I am scared of him being under anesthesia very long. Isnt there risks
      involved with kids with mito and that?
      ***********wonderful about his eating!!! Get your hands on a copy of one of
      the UMDF bulletins re: the risks of anesthesia and mitochondrial
      disease...contact UMDF and they can email or snail-mail you a copy. Get it
      into his chart at the docs, and at the hosp. Staci's eye surgeon is very
      picky about what anesth. she'll use...has to be one good with pedes, and who
      has had experience with malignant hyperthermia.*****

      Im sure you can tell I am still unsure about my decision. Any input-good or
      bad would be helpful!
      ********I think you're making absolutely wonderful decisions, m'dear. A pat
      on the back and a hug to you.***************
      <SNIP>

      Also-my sons seizures(infantile spasms) are getting worse and will have to
      look into drugs again. We tryed Klonopin and that sedated him too much. The
      other drug of choice from the Dr was Depakote but he has afraid to try that
      in
      the liver problems and the organs involved with mito. Any suggestions?
      **************absolutely no way, no , nada, nyet, is the doc out of his
      mind??? re: the Depakote. Staci had complex partial seizures, now they are
      myoclonic. Our neuro. has often used relatively new drugs of Lamictal, and
      Topamax. They are started VERY slowly, a half tab a week, on a very strict
      schedule. Lamictal is usually tried first, then they go to the Topamax. We
      have other friends whose child has infantile spasms, the Klonopin had been
      tried and failed. They now have to get a drug from Mexico, that isn't FDA
      approved here yet. Of course we are in the LA area, so it's not too hard, but
      perhaps someone in the San Diego area can help you even more. If you're
      interested, I can contact my friends to find out the name of the drug and the
      source, and perhaps some med. ref.'s for your doc. **********

      Thanks so much!!! Heidi Harmon
      >>
      *******************You're so welcome!! Kate Echert Stacimom---Anastasia's
      5, and has Resp. Chain Complex II, and a host of problems, most urgent is
      cataracts that need surgery, and spells of acidosis. Gotta go to bed
      now--good night. Love, Kate
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