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Re: Julia is really sick----------help please!

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  • Donna
    ... while ... the ... Like Michelle said, You know your daughter better than anyone. If you ever feel something is not right, and your doctor is not doing
    Message 1 of 2 , Mar 9, 2005
      --- In familiesofangelmansyndrome@yahoogroups.com, "klyngraham"
      <klyngraham@y...> wrote:
      >
      > Julia is on lamictal for siezures that started in '03 her dr. has
      > slowly increased the medicine and she had no more seizures. The
      > lamictal ,I was told keeps her seizure free for three years and in
      > some cases forever. Around Christmas time she started falling
      while
      > she stood at the table,off her chair and even while crawling on
      the
      > floor.



      Like Michelle said, You know your daughter better than anyone. If
      you ever feel something is not right, and your doctor is not doing
      enough, Take her to the emergency room.


      I almost lost my son because I listen to a doctor that was on call.
      Kevin has severe lennox gastaut and spent almost a year and a half
      in and out of the hospital. Kevins Neuro told me to just call his
      office if Kevin needed to be hospitalized,I would call his office
      and he would tell me to bring him to the hospital and they would
      have a room ready for him, This help by pass the ER and all the
      unnecessary test! Kevin spent most of that year and a half
      hospitalized.

      One night I called and the doctor on call, (some doctor Kevin had
      never seen, He was from India or some place) He apparently knew
      about Kevin, He said Mrs. Arnold there is nothing we can do for your
      son. I explained to him how bad he was, He insisted they have tried
      everything and there was nothing left they could do.


      This was at 11pm, I hung up the phone and cried. Kevin was on a
      comforter seizing all night, My heart ached more that night then any
      other night. At 8 am I called his Neuro and told him what happened,
      I begged him to please help Kevin, He of course told me to bring
      Kevin down and he would have a room ready for him, Kevin was
      transfered to PICU is status, His EEG showed him having a 10-15 sec
      break from seizing every 15-20 minutes.He stayed this way for three
      days.

      I never did see or hear anymore about the (Indian Doctor)

      When Kevin was in PICU, His Neuro came in all day long to check on
      him, The nurses said they had never seen Kevins doctor do this with
      another child. I will never forgive that Indian doctor for what he
      said to me.

      Kevins Neuro told me, "You know Kevin better then anyone, If you
      think he needs to be here, Bring him in" Being 23 years old, and
      naive, I thought Doctors were "Gods" Until that night.


      Its hard when your young and have all this on you. How some of you
      deal with two or three little angels..I have no idea.


      Donna
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