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Lots of issues this week ... going nuts

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  • seamustim2000
    Malcolm has been wearing a helmet for his plagiocephaly. Has anyone here done that? I ve had to keep it off for 24 hours. There is chafing from wearing the
    Message 1 of 4 , Mar 1, 2006
      Malcolm has been wearing a helmet for his plagiocephaly. Has anyone
      here done that? I've had to keep it off for 24 hours. There is chafing
      from wearing the helmet over night depsite giving him 2 or 3 hours in
      between wearings. There is dry peeling skin around the red spot, which
      is still there since I took the helmet off early this AM. It almost
      feel like a bone spur. I swear the bump wasn't there (or at least
      noticeable) before the helmet.

      I want the helmet to work but obviously don't want Malcolm to hurt or
      have problems due to a helmet not working.

      We are also going to get a second opinion on Malcolm's tracheostomy.
      I've read about other babies getting tracheal surgery, like
      laryngoplasty to correct narrowing before two. We are going to be
      referred to the children's hospital in Jacksonville. I don't know how
      aggressive to be about this. I don't want to make enemies with my
      current ENT.

      Malcolm had a gross overdose (90 mg) of gentamicin and we are watching
      his hearing and balance carefully. We still haven't gotten an ABR and
      I'm still worried about his hearing. He hears, but he seems to startle
      easily at high frequencies. I'm wondering if he hears, but at low
      volume, so loud noises are particularly startling.

      Any advice? I'd welcome it about now. I'm going nuts.

      Cheers,
      Jessica

      We have to get a GI xray because his Nissen doesn't seem to be
      preventing him from puking. Grrrr. Frustrating week.

      Any advice?
    • Jennifer Anne
      There is a plagiocephaly yahoo group if you are interested. I subscribed to it, they are very nice! I hope they can help you!! Jen ... chafing ... in ... which
      Message 2 of 4 , Mar 4, 2006
        There is a plagiocephaly yahoo group if you are interested. I
        subscribed to it, they are very nice! I hope they can help you!!
        Jen

        --- In Tracheostomy_infants@yahoogroups.com, "seamustim2000"
        <turnerne@...> wrote:
        >
        > Malcolm has been wearing a helmet for his plagiocephaly. Has anyone
        > here done that? I've had to keep it off for 24 hours. There is
        chafing
        > from wearing the helmet over night depsite giving him 2 or 3 hours
        in
        > between wearings. There is dry peeling skin around the red spot,
        which
        > is still there since I took the helmet off early this AM. It almost
        > feel like a bone spur. I swear the bump wasn't there (or at least
        > noticeable) before the helmet.
        >
        > I want the helmet to work but obviously don't want Malcolm to hurt
        or
        > have problems due to a helmet not working.
        >
        > We are also going to get a second opinion on Malcolm's
        tracheostomy.
        > I've read about other babies getting tracheal surgery, like
        > laryngoplasty to correct narrowing before two. We are going to be
        > referred to the children's hospital in Jacksonville. I don't know
        how
        > aggressive to be about this. I don't want to make enemies with my
        > current ENT.
        >
        > Malcolm had a gross overdose (90 mg) of gentamicin and we are
        watching
        > his hearing and balance carefully. We still haven't gotten an ABR
        and
        > I'm still worried about his hearing. He hears, but he seems to
        startle
        > easily at high frequencies. I'm wondering if he hears, but at low
        > volume, so loud noises are particularly startling.
        >
        > Any advice? I'd welcome it about now. I'm going nuts.
        >
        > Cheers,
        > Jessica
        >
        > We have to get a GI xray because his Nissen doesn't seem to be
        > preventing him from puking. Grrrr. Frustrating week.
        >
        > Any advice?
        >
      • Raven Davis
        when you say jacksonville do you mean jacksonville florida and if so have you contacted a doctor that has privleges at wolfsons already or are you still in the
        Message 3 of 4 , Mar 4, 2006
          when you say jacksonville do you mean jacksonville florida and if so have you contacted a doctor that has privleges at wolfsons already or are you still in the process  i as because if you mean jax fl that is where i am and of couse my little jonathan practicaly lived at wolfsons for the first year  soooo
           
          oh and about the nissen jonthans works most of the time but if he gets real sick or real full he pukes and it is projectile  we had a x-ray and they told me that it is still working just not as tight as it was however because of the failure rate with a second nissen procedure they decided to leave it as was since it was helping some  so i guess the point i am getting to is you have to keep in mind the %'s for it working after a second surgery and weigh that against the % that it is not working now 
           
          good luck 
          raven


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        • Raven Davis
          i sent that response to the wrong person can you please forward it on for me thank you raven Smurf Smile Sexy Smiles So Smile Smurf Syle Ciao Ciao :) ...
          Message 4 of 4 , Mar 4, 2006
            i sent that response to the wrong person can you please forward it on for me thank you
            raven


            Smurf Smile Sexy Smiles So Smile Smurf Syle Ciao Ciao :)


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