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Re: [Myotubular_Myopathy] Update Kyle - nurse, etc

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  • Amanda Hollingsworth
    Kristin, I can really feel your frustration. And you are right - no adult patient would tolerate being treated that way and our children should not have to
    Message 1 of 12 , Apr 1, 2005
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      Kristin,  I can really feel your frustration.  And you are right - no adult patient would tolerate being treated that way and our children should not have to be either.  I am so sorry that you all had to go through that.  When Jacob was in the hospital last month we encountered the most no-it-all, indignant, demeaning doctor I have ever met.  There was my 3-year-old son, fully aware and cognizant of everything around him, and this doctor decides to talk to us from the hallway, and not very compassionately at that.  First of all, big no-no in regards to patient confidentiality.  So once I invited him in he stood at the foot of Jacob's bed, without recognizing Jacob, saying hi, anything, and proceeds to tell us everything he already knew about Jacob, because of course he is the doctor and he knows EVERYTHING that is going on with Jacob - although that was the FIRST time he had spoken to us.   I guess I failed to remember the fact that he *may have* read over Jacob's chart.  I was too wrapped up in the fact that so many doctors try to write off Jacob as though he is just a lost cause.  My husband has a very short fuse when it comes to these doctors and I had to really calm him down and remind him that our goal was to get out of that hospital and we didn't need social workers on us.  I filed a complaint with the hospital and his group.  I have yet to hear anything back from either.  Sorry to ramble and go off on this tangent, but I just wanted to let you know that you are not alone.
       
      We are absolutely our children's ONLY advocate.  I feel as though each time I have let my guard down, I get disappointed by those I think are on our side. 
       
      It is certainly a long, winding, bumpy road, but it is all worth it.
       
      Thinking of you all, Amanda
       
      -------Original Message-------
       
      Date: 04/01/05 00:09:51
      Subject: Re: [Myotubular_Myopathy] Update Kyle - nurse, etc
       
      Hi Darlene:
       
      Thank you so much for your thoughts and suggestions!  I looked into alternative doctors this afternoon, and I have two really good leads for second opinions, and I feel sure that we will work this out so that surgery is the LAST option.
       
      Now that I've had time to think it over, I believe that the thing that really upsets me isn't so much the eye troubles, but the demeanor of some of the doctors that we deal with.  The person we saw today was a pediatric opthamologist, so you'd think they would be respectful of children, but no, he was loud and invasive, and Paul and I had to tell him to respect Sebastian several times.  The final straw was when he really wanted Sebi to hold his head still and just try to move his eyes to the sides, and instead of telling Paul and I what he wanted and letting us all brainstorm a quick solution to get Sebi to do this, he just grabbed his head, really hard, and tried to hold it still.  This was after Sebi was already crying his eyes out from being so afraid.  I was furious, and Paul (my husband) almost lost it.  I mean, can you imagine a 'grown up' doctor treating an adult patient in this way?  It would never be tolerated.  But, it just seems like children are not given any respect, and especially children who have to have lots of invasive things done to them.  When Sebi was in the NICU as a baby, I saw nurses handle infants so roughly it made me cry (and stick by Sebi like glue), and as he has gotten older and we've experienced more doctors, it's rare to find one that really respects that children need to be treated kindly.  Didn't they ever read 'Horton Hears a Who'?  "A person's a person, no matter how small."
       
      Anyway, what a diatribe!  Sorry!  It's just that things like today make me realize that I really need to remain a strong advocate for Sebi, until he can be an advocate for himself.
       
      How is your husband's pneumonia doing?  I had double pneumonia 8 years ago, and it was so draining.  You all are in my thoughts.
       
      Kristin

      ANN MILLER <dm4462@...> wrote:
      Hi Kristin,
       
      I would get a second opinion.  Our doctor said it was due to Kyle having weak eye muscles.  We waited three months to see if there was any change.  Kyle's improved as he got stronger.  My cousin' s little girl had to wear a patch over her good eye for 3 months and then had eye therapy.  Her's improved after 8 months.  I'm not saying he will not need surgery, but I would check into everything else first.  Surgery would be my last choice.
       
      Hope everything turns out ok for Sebastian.  We will pray he only needs therapy.
       
      Take care,
       
      Darlene 
      ----- Original Message -----
      Sent: Thursday, March 31, 2005 3:58 PM
      Subject: Re: [Myotubular_Myopathy] Update Kyle - nurse, etc

      Hi Darlene!
       
      Thank you for all your advice regarding Sebastian's eye issues.  We took him to the pediatric opthamologist today, and they said that he has exotropia.  This basically means that when he is looking far away, one of his eyes focuses, and this other looks slightly away.  It varies from one eye to the other, so it shouldn't impact the ability for his brain to use both eyes, but the doctor basically told us that if we didn't have surgery soon to correct it, there would be an increased risk of additional surgeries in the future.  I am so mad, because as soon as we got home, I checked the internet to see what the typical diagnosis for this type of condition is, and they ALL said that surgery should be the last resort!  So, now I'm trying the find a second doctor in the Denver area that specializes in both children and therapy-vs-surgery.  Grrrr!!
       
      I guess the thing that upsets me the most is Sebi is so traumatized by going to the doctor, and this doc was recommended through the muscle clinic at the hospital, and the doctor told me directly that he has never worked with the child with a muscle problem!  So, although I think that Sebi does have this eye condition, now I'm wondering if any of it could be related to the MTM.  My 28 year old brother also has MTM, and he has very little movement in his eyes (it kind of just looks like he is staring at you, if this makes sense).  Anyway, you said that your doctor told you that Kyle's eye turning out was related to the MTM, right?  Could you tell me a little more about this (how much did it turn out, was it just one eye all the time, etc), and if it has improved for Kyle w/o surgery?
       
      Thank you!
      Kristin


      ANN MILLER <dm4462@...> wrote:
      Hi Kristin,
      This is the first time we have had nursing since I've had Kyle with me.  Where we use to live, when his parents lived with us we had nursing for 2 months, they said it was too far to travel.   Six months ago the school said we needed a nurse for Kyle to start preschool, we started looking, the nurses said the insurance co. wasn't paying enough.  In January we found one that was willing to work for what they pay.  Then this other one started recently. 
       
      Kyle was like Sebastian too.  He didn't like being in crowds, being around people he didn't know.  He would take his trach out it I left him with his father.  Did not like the doctors, would hold his breath, cry, anything to try and get out of there.  I started taking him shopping, to the library for toddler hour (he loves the library), out to eat, to Baltimore Habor, anyplace I knew alot  of people would be.  Now he loves going places and meeting people.    When we go to the doctors now we take his favorite book or toy.  The nurses give him paper and pen to write with, stickers, play with him, etc.  He loves the attention now.  He still doesn't like me leaving him any length of time.    Weekend before last we went to meeting without him, I left him with his father.  When we got back home he called me into his room, gave me a hug then slapped my hand and signed bad mawmaw. 
       
      Kyle has gone to the eye doctors since he was 10 months old.  He has dry eyes and sleeps with them half open.  He also had a lazy eye that drifted too (that was from the weak muscles).  They examined him and said he was also alittle nearsighted and would need glasses in the near future.  He went ever 6 months until this last visit now he will go once a year.   Find out if there were any eye problems in past generations.  The dry eyes and sleeping with them half open goes back 3 generations in our family.    
       
      Well, today I let the new nurse go.  I had to take Kyle's grandfather to the ER.  He was having trouble breathing.  I left her at home with Kyle about 5-6 hours alone.  When I got home she was coming out the door, met me in the yard, ready to leave, said Kyle was ok, not much of a problem just kept setting the vent off HIGH PRESSURE.  When I went in the house he was signing help and pulled the vent circuit off.  When I went to him it was full of sacretions, not just a little but about eight inches down the hoses.  She had never checked the lines or anything to see why the vent was alarming.  She just
      assumed Kyle was doing it.    So when Kyle tells me he doesn't like someone, I'm going to listen from now on.  I guess he not only is smart for his age, he also has a six sense about things.
       
      Hope Sebastian is doing good.
       
      Take care,
       
      Darlene
       
       
       
      Sent: Saturday, March 26, 2005 1:28 PM
      Subject: Re: [Myotubular_Myopathy] Update Kyle - nurse, etc

      Hi Darlene!
       
      I didn't know whether to laugh or cry about Kyle's new nurse - it really sounds like he doesn't like her, and your description of all his antics is so funny!  But, I can hear your frustration coming through, too, and I don't know what to say.  Sebastian doesn't have a nurse, but he is really fearful of EVERYone who isn't Paul, our close relatives or myself.  He is especially hard to calm down in any kind of medical office, and I haven't figured out what to do about this.  It's something that I really worry about.  In that way, I'm proud of Kyle for having so much spark!!  He sounds so fiesty with her, and I also love that he is so outgoing in school - what a cutie!!
       
      We think that Sebi might need glasses, too.  He has a bit of 'eye drift' (if you understand what I mean).  When he is looking far away, one of his eyes tends to not focus and drift out.  We have an appointment with the pediatric eye doctor next week, and I'm interested to see what they say.  How did you know that Kyle was nearsighted?  Did his eyes drift, too?  If you have any advice for me going into the eye doctor, that would be great, because I know they are not going to have seen another boy with MTM.
       
      I'm so sorry to hear that his grandad has double pneumonia!  The description of them sitting together to watch tv at night sounded so nice and sweet.  I hope he gets well soon!
       
      Take care,
      Kristin

      Darlene <dm4462@...> wrote:

      Hi all,

      Well, things are about the same.  Kyle doesn't ignore her anymore. 
      Now he is just playing tricks on her.  He hides things from her.  He
      will tell her he wants to be on the floor then turn around and tell
      her he wants back in his chair.  Doesn't want her to suction him. 
      Tells her no and puts his hand over his trach.  Still sets the vent
      and pulsox alarms off.  When she puts his AFO's on he will take his
      foot out before she can get his shoe on.  Will not take a nap while
      she is here.  I think he's afraid he might miss something to do to
      her.  Takes her glasses from her.  I wear glasses and so does the
      other nurse and he doesn't do that to us or anyone else who wears
      glasses.  I have tryed everything I can think off.  I've made him
      stay in his room with her for several hours, told him he had to be
      nice or would not go outside (his favorite place), left the house
      for half the day so they are alone.  Nothing works! He is just a
      little stinker with her. 

      Kyle's eyes are worse.  We are getting a stronger prescription for
      nearsightness.  You would not believe they tryed to charge me $20.00
      fee for using his old frames (which are still in good shape and fit
      fine).  They wanted me to buy new frames.  I told them I wanted to
      use the old ones and would go somewhere else if I had to pay the
      fee.  They dropped the fee. 

      In o/t and p/t this week, they are teaching him to get in and out of
      his manual chair.  He has undoing the seatbelt down pat.  He can get
      out but still having trouble getting in, which is understandable. 
      His p/t said it will take him a little while to get use to it. 
      Trying to pull all his weight up is alot for him. 

      School is still giving us a hard time.  But I'm not giving up. 

      Kyle's granddad is sick with double pneumonia.  I'm having a hard
      time keeping Kyle away from him.  He doesn't understand why he can't
      sit in his lap to watch TV(which is their favorite pass time in the
      evenings). 

      All in all, Kyle is doing great!  He is getting stronger.

      Hope everyone is doing good.  Have a Happy Easter!

      Love,

      Darlene and Kyle 






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    • ANN MILLER
      Hi Kristin, I ve heard doctors say so many times that Kyle doesn t understand what they say or going on. Well, he has proved them wrong everytime since he was
      Message 2 of 12 , Apr 2, 2005
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        Hi Kristin,
         
        I've heard doctors say so many times that Kyle doesn't understand what they say or going on.  Well, he has proved them wrong everytime since he was about a year old.   Needless to say we don't go to those doctors anymore.  We are very lucky to have doctors who understand Kyle and are very caring to him.  They talk to Kyle as a person not an object.  Our pulmonologist always ask Kyle how he is feeling and tells him he will know when it is time for him to come off the vent again.  Kyle has been doing really good the past couple of weeks.  He is up to 6 hours off the vent again. 
         
        ItÂ’s ok to vent.  We all need to sometime or another.  I've been doing it quite alot lately. 
         
        My husband is doing better.  Still gets really tired easy, but his breathing is much better.  Kyle got to sit in his lap and watch TV again Thursday.   You would have thought he had a new toy.  Kyle didn't want to go to bed.  He just kept holding his hand and touching his face. 
         
        Hope all is well with your family.
         
        Take care,
         
        Darlene
        ----- Original Message -----
        Sent: Friday, April 01, 2005 12:09 AM
        Subject: Re: [Myotubular_Myopathy] Update Kyle - nurse, etc

        Hi Darlene:
         
        Thank you so much for your thoughts and suggestions!  I looked into alternative doctors this afternoon, and I have two really good leads for second opinions, and I feel sure that we will work this out so that surgery is the LAST option.
         
        Now that I've had time to think it over, I believe that the thing that really upsets me isn't so much the eye troubles, but the demeanor of some of the doctors that we deal with.  The person we saw today was a pediatric opthamologist, so you'd think they would be respectful of children, but no, he was loud and invasive, and Paul and I had to tell him to respect Sebastian several times.  The final straw was when he really wanted Sebi to hold his head still and just try to move his eyes to the sides, and instead of telling Paul and I what he wanted and letting us all brainstorm a quick solution to get Sebi to do this, he just grabbed his head, really hard, and tried to hold it still.  This was after Sebi was already crying his eyes out from being so afraid.  I was furious, and Paul (my husband) almost lost it.  I mean, can you imagine a 'grown up' doctor treating an adult patient in this way?  It would never be tolerated.  But, it just seems like children are not given any respect, and especially children who have to have lots of invasive things done to them.  When Sebi was in the NICU as a baby, I saw nurses handle infants so roughly it made me cry (and stick by Sebi like glue), and as he has gotten older and we've experienced more doctors, it's rare to find one that really respects that children need to be treated kindly.  Didn't they ever read 'Horton Hears a Who'?  "A person's a person, no matter how small."
         
        Anyway, what a diatribe!  Sorry!  It's just that things like today make me realize that I really need to remain a strong advocate for Sebi, until he can be an advocate for himself.
         
        How is your husband's pneumonia doing?  I had double pneumonia 8 years ago, and it was so draining.  You all are in my thoughts.
         
        Kristin

        ANN MILLER <dm4462@...> wrote:
        Hi Kristin,
         
        I would get a second opinion.  Our doctor said it was due to Kyle having weak eye muscles.  We waited three months to see if there was any change.  Kyle's improved as he got stronger.  My cousin' s little girl had to wear a patch over her good eye for 3 months and then had eye therapy.  Her's improved after 8 months.  I'm not saying he will not need surgery, but I would check into everything else first.  Surgery would be my last choice.
         
        Hope everything turns out ok for Sebastian.  We will pray he only needs therapy.
         
        Take care,
         
        Darlene 
        ----- Original Message -----
        Sent: Thursday, March 31, 2005 3:58 PM
        Subject: Re: [Myotubular_Myopathy] Update Kyle - nurse, etc

        Hi Darlene!
         
        Thank you for all your advice regarding Sebastian's eye issues.  We took him to the pediatric opthamologist today, and they said that he has exotropia.  This basically means that when he is looking far away, one of his eyes focuses, and this other looks slightly away.  It varies from one eye to the other, so it shouldn't impact the ability for his brain to use both eyes, but the doctor basically told us that if we didn't have surgery soon to correct it, there would be an increased risk of additional surgeries in the future.  I am so mad, because as soon as we got home, I checked the internet to see what the typical diagnosis for this type of condition is, and they ALL said that surgery should be the last resort!  So, now I'm trying the find a second doctor in the Denver area that specializes in both children and therapy-vs-surgery.  Grrrr!!
         
        I guess the thing that upsets me the most is Sebi is so traumatized by going to the doctor, and this doc was recommended through the muscle clinic at the hospital, and the doctor told me directly that he has never worked with the child with a muscle problem!  So, although I think that Sebi does have this eye condition, now I'm wondering if any of it could be related to the MTM.  My 28 year old brother also has MTM, and he has very little movement in his eyes (it kind of just looks like he is staring at you, if this makes sense).  Anyway, you said that your doctor told you that Kyle's eye turning out was related to the MTM, right?  Could you tell me a little more about this (how much did it turn out, was it just one eye all the time, etc), and if it has improved for Kyle w/o surgery?
         
        Thank you!
        Kristin


        ANN MILLER <dm4462@...> wrote:
        Hi Kristin,
        This is the first time we have had nursing since I've had Kyle with me.  Where we use to live, when his parents lived with us we had nursing for 2 months, they said it was too far to travel.   Six months ago the school said we needed a nurse for Kyle to start preschool, we started looking, the nurses said the insurance co. wasn't paying enough.  In January we found one that was willing to work for what they pay.  Then this other one started recently. 
         
        Kyle was like Sebastian too.  He didn't like being in crowds, being around people he didn't know.  He would take his trach out it I left him with his father.  Did not like the doctors, would hold his breath, cry, anything to try and get out of there.  I started taking him shopping, to the library for toddler hour (he loves the library), out to eat, to Baltimore Habor, anyplace I knew alot  of people would be.  Now he loves going places and meeting people.    When we go to the doctors now we take his favorite book or toy.  The nurses give him paper and pen to write with, stickers, play with him, etc.  He loves the attention now.  He still doesn't like me leaving him any length of time.    Weekend before last we went to meeting without him, I left him with his father.  When we got back home he called me into his room, gave me a hug then slapped my hand and signed bad mawmaw. 
         
        Kyle has gone to the eye doctors since he was 10 months old.  He has dry eyes and sleeps with them half open.  He also had a lazy eye that drifted too (that was from the weak muscles).  They examined him and said he was also alittle nearsighted and would need glasses in the near future.  He went ever 6 months until this last visit now he will go once a year.   Find out if there were any eye problems in past generations.  The dry eyes and sleeping with them half open goes back 3 generations in our family.    
         
        Well, today I let the new nurse go.  I had to take Kyle's grandfather to the ER.  He was having trouble breathing.  I left her at home with Kyle about 5-6 hours alone.  When I got home she was coming out the door, met me in the yard, ready to leave, said Kyle was ok, not much of a problem just kept setting the vent off HIGH PRESSURE.  When I went in the house he was signing help and pulled the vent circuit off.  When I went to him it was full of sacretions, not just a little but about eight inches down the hoses.  She had never checked the lines or anything to see why the vent was alarming.  She just
        assumed Kyle was doing it.    So when Kyle tells me he doesn't like someone, I'm going to listen from now on.  I guess he not only is smart for his age, he also has a six sense about things.
         
        Hope Sebastian is doing good.
         
        Take care,
         
        Darlene
         
         
         
        Sent: Saturday, March 26, 2005 1:28 PM
        Subject: Re: [Myotubular_Myopathy] Update Kyle - nurse, etc

        Hi Darlene!
         
        I didn't know whether to laugh or cry about Kyle's new nurse - it really sounds like he doesn't like her, and your description of all his antics is so funny!  But, I can hear your frustration coming through, too, and I don't know what to say.  Sebastian doesn't have a nurse, but he is really fearful of EVERYone who isn't Paul, our close relatives or myself.  He is especially hard to calm down in any kind of medical office, and I haven't figured out what to do about this.  It's something that I really worry about.  In that way, I'm proud of Kyle for having so much spark!!  He sounds so fiesty with her, and I also love that he is so outgoing in school - what a cutie!!
         
        We think that Sebi might need glasses, too.  He has a bit of 'eye drift' (if you understand what I mean).  When he is looking far away, one of his eyes tends to not focus and drift out.  We have an appointment with the pediatric eye doctor next week, and I'm interested to see what they say.  How did you know that Kyle was nearsighted?  Did his eyes drift, too?  If you have any advice for me going into the eye doctor, that would be great, because I know they are not going to have seen another boy with MTM.
         
        I'm so sorry to hear that his grandad has double pneumonia!  The description of them sitting together to watch tv at night sounded so nice and sweet.  I hope he gets well soon!
         
        Take care,
        Kristin

        Darlene <dm4462@...> wrote:

        Hi all,

        Well, things are about the same.  Kyle doesn't ignore her anymore. 
        Now he is just playing tricks on her.  He hides things from her.  He
        will tell her he wants to be on the floor then turn around and tell
        her he wants back in his chair.  Doesn't want her to suction him. 
        Tells her no and puts his hand over his trach.  Still sets the vent
        and pulsox alarms off.  When she puts his AFO's on he will take his
        foot out before she can get his shoe on.  Will not take a nap while
        she is here.  I think he's afraid he might miss something to do to
        her.  Takes her glasses from her.  I wear glasses and so does the
        other nurse and he doesn't do that to us or anyone else who wears
        glasses.  I have tryed everything I can think off.  I've made him
        stay in his room with her for several hours, told him he had to be
        nice or would not go outside (his favorite place), left the house
        for half the day so they are alone.  Nothing works! He is just a
        little stinker with her. 

        Kyle's eyes are worse.  We are getting a stronger prescription for
        nearsightness.  You would not believe they tryed to charge me $20.00
        fee for using his old frames (which are still in good shape and fit
        fine).  They wanted me to buy new frames.  I told them I wanted to
        use the old ones and would go somewhere else if I had to pay the
        fee.  They dropped the fee. 

        In o/t and p/t this week, they are teaching him to get in and out of
        his manual chair.  He has undoing the seatbelt down pat.  He can get
        out but still having trouble getting in, which is understandable. 
        His p/t said it will take him a little while to get use to it. 
        Trying to pull all his weight up is alot for him. 

        School is still giving us a hard time.  But I'm not giving up. 

        Kyle's granddad is sick with double pneumonia.  I'm having a hard
        time keeping Kyle away from him.  He doesn't understand why he can't
        sit in his lap to watch TV(which is their favorite pass time in the
        evenings). 

        All in all, Kyle is doing great!  He is getting stronger.

        Hope everyone is doing good.  Have a Happy Easter!

        Love,

        Darlene and Kyle 






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      • Jessica Juckers
        Darlene, You are lucky to have doctors who care about Kyle. Our doctors are wonderful, despite jacks condition, which is barely ever mentioned in the context
        Message 3 of 12 , Apr 2, 2005
        • 0 Attachment
          Darlene, You are lucky to have doctors who care about Kyle. Our doctors are wonderful, despite jacks condition, which is barely ever mentioned in the context of things, instead they deal with Jacks present issues. I am also glad that instead of "patching up" Jack, they all have a strong desire to reach goals we and they together have set to try to accomplish for Jack. The most important goal we have, is to help Jack develope as a little boy who is cognitively aware and to meet his needs, despite the disability that often hinders him. We were very fortunate to have a doctor convey his respect for us, and also to recognise that despite the seriousness of Jacks illness, we have helped the staff change the way think about children on ventilators fulltime, that working on goals, both mentally and physically for the patients, it is very instrumental in their wellbeing rather then the view of prolonging the inevitable (full stop)
          Our doctors also are aware that you cannot possibly predict or diagnose this conditin as there is conflicting evidence on past diagnoses. Like someone said before; our boys have proven wrong a lot of assumptions made in past.

          I wish a lot of the medical profession wasn't so close minded and wasn't all about worst case scenario and reading texts as gospel.  Thats why second opinions are a good idea if your doctors are working against you, not with you.

          J

          Hi Kristin,
           
          I've heard doctors say so many times that Kyle doesn't understand what they say or going on.  Well, he has proved them wrong everytime since he was about a year old.   Needless to say we don't go to those doctors anymore.  We are very lucky to have doctors who understand Kyle and are very caring to him.  They talk to Kyle as a person not an object.  Our pulmonologist always ask Kyle how he is feeling and tells him he will know when it is time for him to come off the vent again.  Kyle has been doing really good the past couple of weeks.  He is up to 6 hours off the vent again. 
           
          It’s ok to vent.  We all need to sometime or another.  I've been doing it quite alot lately. 
           
          My husband is doing better.  Still gets really tired easy, but his breathing is much better.  Kyle got to sit in his lap and watch TV again Thursday.   You would have thought he had a new toy.  Kyle didn't want to go to bed.  He just kept holding his hand and touching his face. 
           
          Hope all is well with your family.
           
          Take care,
           
          Darlene
          ----- Original Message -----
          Sent: Friday, April 01, 2005 12:09 AM
          Subject: Re: [Myotubular_Myopathy] Update Kyle - nurse, etc

          Hi Darlene:
           
          Thank you so much for your thoughts and suggestions!  I looked into alternative doctors this afternoon, and I have two really good leads for second opinions, and I feel sure that we will work this out so that surgery is the LAST option.
           
          Now that I've had time to think it over, I believe that the thing that really upsets me isn't so much the eye troubles, but the demeanor of some of the doctors that we deal with.  The person we saw today was a pediatric opthamologist, so you'd think they would be respectful of children, but no, he was loud and invasive, and Paul and I had to tell him to respect Sebastian several times.  The final straw was when he really wanted Sebi to hold his head still and just try to move his eyes to the sides, and instead of telling Paul and I what he wanted and letting us all brainstorm a quick solution to get Sebi to do this, he just grabbed his head, really hard, and tried to hold it still.  This was after Sebi was already crying his eyes out from being so afraid.  I was furious, and Paul (my husband) almost lost it.  I mean, can you imagine a 'grown up' doctor treating an adult patient in this way?  It would never be tolerated.  But, it just seems like children are not given any respect, and especially children who have to have lots of invasive things done to them.  When Sebi was in the NICU as a baby, I saw nurses handle infants so roughly it made me cry (and stick by Sebi like glue), and as he has gotten older and we've experienced more doctors, it's rare to find one that really respects that children need to be treated kindly.  Didn't they ever read 'Horton Hears a Who'?  "A person's a person, no matter how small."
           
          Anyway, what a diatribe!  Sorry!  It's just that things like today make me realize that I really need to remain a strong advocate for Sebi, until he can be an advocate for himself.
           
          How is your husband's pneumonia doing?  I had double pneumonia 8 years ago, and it was so draining.  You all are in my thoughts.
           
          Kristin

          ANN MILLER <dm4462@...> wrote:
          Hi Kristin,
           
          I would get a second opinion.  Our doctor said it was due to Kyle having weak eye muscles.  We waited three months to see if there was any change.  Kyle's improved as he got stronger.  My cousin' s little girl had to wear a patch over her good eye for 3 months and then had eye therapy.  Her's improved after 8 months.  I'm not saying he will not need surgery, but I would check into everything else first.  Surgery would be my last choice.
           
          Hope everything turns out ok for Sebastian.  We will pray he only needs therapy.
           
          Take care,
           
          Darlene 
          ----- Original Message -----
          Sent: Thursday, March 31, 2005 3:58 PM
          Subject: Re: [Myotubular_Myopathy] Update Kyle - nurse, etc

          Hi Darlene!
           
          Thank you for all your advice regarding Sebastian's eye issues.  We took him to the pediatric opthamologist today, and they said that he has exotropia.  This basically means that when he is looking far away, one of his eyes focuses, and this other looks slightly away.  It varies from one eye to the other, so it shouldn't impact the ability for his brain to use both eyes, but the doctor basically told us that if we didn't have surgery soon to correct it, there would be an increased risk of additional surgeries in the future.  I am so mad, because as soon as we got home, I checked the internet to see what the typical diagnosis for this type of condition is, and they ALL said that surgery should be the last resort!  So, now I'm trying the find a second doctor in the Denver area that specializes in both children and therapy-vs-surgery.  Grrrr!!
           
          I guess the thing that upsets me the most is Sebi is so traumatized by going to the doctor, and this doc was recommended through the muscle clinic at the hospital, and the doctor told me directly that he has never worked with the child with a muscle problem!  So, although I think that Sebi does have this eye condition, now I'm wondering if any of it could be related to the MTM.  My 28 year old brother also has MTM, and he has very little movement in his eyes (it kind of just looks like he is staring at you, if this makes sense).  Anyway, you said that your doctor told you that Kyle's eye turning out was related to the MTM, right?  Could you tell me a little more about this (how much did it turn out, was it just one eye all the time, etc), and if it has improved for Kyle w/o surgery?
           
          Thank you!
          Kristin


          ANN MILLER <dm4462@...> wrote:
          Hi Kristin,
          This is the first time we have had nursing since I've had Kyle with me.  Where we use to live, when his parents lived with us we had nursing for 2 months, they said it was too far to travel.   Six months ago the school said we needed a nurse for Kyle to start preschool, we started looking, the nurses said the insurance co. wasn't paying enough.  In January we found one that was willing to work for what they pay.  Then this other one started recently. 
           
          Kyle was like Sebastian too.  He didn't like being in crowds, being around people he didn't know.  He would take his trach out it I left him with his father.  Did not like the doctors, would hold his breath, cry, anything to try and get out of there.  I started taking him shopping, to the library for toddler hour (he loves the library), out to eat, to Baltimore Habor, anyplace I knew alot  of people would be.  Now he loves going places and meeting people.    When we go to the doctors now we take his favorite book or toy.  The nurses give him paper and pen to write with, stickers, play with him, etc.  He loves the attention now.  He still doesn't like me leaving him any length of time.    Weekend before last we went to meeting without him, I left him with his father.  When we got back home he called me into his room, gave me a hug then slapped my hand and signed bad mawmaw. 
           
          Kyle has gone to the eye doctors since he was 10 months old.  He has dry eyes and sleeps with them half open.  He also had a lazy eye that drifted too (that was from the weak muscles).  They examined him and said he was also alittle nearsighted and would need glasses in the near future.  He went ever 6 months until this last visit now he will go once a year.   Find out if there were any eye problems in past generations.  The dry eyes and sleeping with them half open goes back 3 generations in our family.    
           
          Well, today I let the new nurse go.  I had to take Kyle's grandfather to the ER.  He was having trouble breathing.  I left her at home with Kyle about 5-6 hours alone.  When I got home she was coming out the door, met me in the yard, ready to leave, said Kyle was ok, not much of a problem just kept setting the vent off HIGH PRESSURE.  When I went in the house he was signing help and pulled the vent circuit off.  When I went to him it was full of sacretions, not just a little but about eight inches down the hoses.  She had never checked the lines or anything to see why the vent was alarming.  She just
          assumed Kyle was doing it.    So when Kyle tells me he doesn't like someone, I'm going to listen from now on.  I guess he not only is smart for his age, he also has a six sense about things.
           
          Hope Sebastian is doing good.
           
          Take care,
           
          Darlene
           
           
           
          Sent: Saturday, March 26, 2005 1:28 PM
          Subject: Re: [Myotubular_Myopathy] Update Kyle - nurse, etc

          Hi Darlene!
           
          I didn't know whether to laugh or cry about Kyle's new nurse - it really sounds like he doesn't like her, and your description of all his antics is so funny!  But, I can hear your frustration coming through, too, and I don't know what to say.  Sebastian doesn't have a nurse, but he is really fearful of EVERYone who isn't Paul, our close relatives or myself.  He is especially hard to calm down in any kind of medical office, and I haven't figured out what to do about this.  It's something that I really worry about.  In that way, I'm proud of Kyle for having so much spark!!  He sounds so fiesty with her, and I also love that he is so outgoing in school - what a cutie!!
           
          We think that Sebi might need glasses, too.  He has a bit of 'eye drift' (if you understand what I mean).  When he is looking far away, one of his eyes tends to not focus and drift out.  We have an appointment with the pediatric eye doctor next week, and I'm interested to see what they say.  How did you know that Kyle was nearsighted?  Did his eyes drift, too?  If you have any advice for me going into the eye doctor, that would be great, because I know they are not going to have seen another boy with MTM.
           
          I'm so sorry to hear that his grandad has double pneumonia!  The description of them sitting together to watch tv at night sounded so nice and sweet.  I hope he gets well soon!
           
          Take care,
          Kristin

          Darlene <dm4462@...> wrote:

          Hi all,

          Well, things are about the same.  Kyle doesn't ignore her anymore. 
          Now he is just playing tricks on her.  He hides things from her.  He
          will tell her he wants to be on the floor then turn around and tell
          her he wants back in his chair.  Doesn't want her to suction him. 
          Tells her no and puts his hand over his trach.  Still sets the vent
          and pulsox alarms off.  When she puts his AFO's on he will take his
          foot out before she can get his shoe on.  Will not take a nap while
          she is here.  I think he's afraid he might miss something to do to
          her.  Takes her glasses from her.  I wear glasses and so does the
          other nurse and he doesn't do that to us or anyone else who wears
          glasses.  I have tryed everything I can think off.  I've made him
          stay in his room with her for several hours, told him he had to be
          nice or would not go outside (his favorite place), left the house
          for half the day so they are alone.  Nothing works! He is just a
          little stinker with her. 

          Kyle's eyes are worse.  We are getting a stronger prescription for
          nearsightness.  You would not believe they tryed to charge me $20.00
          fee for using his old frames (which are still in good shape and fit
          fine).  They wanted me to buy new frames.  I told them I wanted to
          use the old ones and would go somewhere else if I had to pay the
          fee.  They dropped the fee. 

          In o/t and p/t this week, they are teaching him to get in and out of
          his manual chair.  He has undoing the seatbelt down pat.  He can get
          out but still having trouble getting in, which is understandable. 
          His p/t said it will take him a little while to get use to it. 
          Trying to pull all his weight up is alot for him. 

          School is still giving us a hard time.  But I'm not giving up. 

          Kyle's granddad is sick with double pneumonia.  I'm having a hard
          time keeping Kyle away from him.  He doesn't understand why he can't
          sit in his lap to watch TV(which is their favorite pass time in the
          evenings). 

          All in all, Kyle is doing great!  He is getting stronger.

          Hope everyone is doing good.  Have a Happy Easter!

          Love,

          Darlene and Kyle 






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        • Jessica Juckers
          Jessica Juckers wrote: Darlene, You are lucky to have doctors who care about Kyle. Our doctors are wonderful, despite jacks condition, which is barely ever
          Message 4 of 12 , Apr 2, 2005
          • 0 Attachment
            Jessica Juckers wrote:
            Darlene, You are lucky to have doctors who care about Kyle. Our doctors are wonderful, despite jacks condition, which is barely ever mentioned in the context of things, instead they deal with Jacks present issues. I am also glad that instead of "patching up" Jack, they all have a strong desire to reach goals we and they together have set to try to accomplish for Jack. The most important goal we have, is to help Jack develope as a little boy who is cognitively aware and to meet his needs, despite the disability that often hinders him. We were very fortunate to have a doctor convey his respect for us, and also to recognise that despite the seriousness of Jacks illness, we have helped the staff change the way think about children on ventilators fulltime, that working on goals, both mentally and physically for the patients, it is very instrumental in their wellbeing rather then the view of prolonging the inevitable (full stop)
            Our doctors also are aware that you cannot possibly predict or diagnose this conditin as there is conflicting evidence on past diagnoses. Like someone said before; our boys have proven wrong a lot of assumptions made in past.

            I wish a lot of the medical profession wasn't so close minded and wasn't all about worst case scenario and reading texts as gospel.  Thats why second opinions are a good idea if your doctors are working against you, not with you.

            J

            Hi Kristin,
             
            I've heard doctors say so many times that Kyle doesn't understand what they say or going on.  Well, he has proved them wrong everytime since he was about a year old.   Needless to say we don't go to those doctors anymore.  We are very lucky to have doctors who understand Kyle and are very caring to him.  They talk to Kyle as a person not an object.  Our pulmonologist always ask Kyle how he is feeling and tells him he will know when it is time for him to come off the vent again.  Kyle has been doing really good the past couple of weeks.  He is up to 6 hours off the vent again. 
             
            It’s ok to vent.  We all need to sometime or another.  I've been doing it quite alot lately. 
             
            My husband is doing better.  Still gets really tired easy, but his breathing is much better.  Kyle got to sit in his lap and watch TV again Thursday.   You would have thought he had a new toy.  Kyle didn't want to go to bed.  He just kept holding his hand and touching his face. 
             
            Hope all is well with your family.
             
            Take care,
             
            Darlene
            ----- Original Message -----
            Sent: Friday, April 01, 2005 12:09 AM
            Subject: Re: [Myotubular_Myopathy] Update Kyle - nurse, etc

            Hi Darlene:
             
            Thank you so much for your thoughts and suggestions!  I looked into alternative doctors this afternoon, and I have two really good leads for second opinions, and I feel sure that we will work this out so that surgery is the LAST option.
             
            Now that I've had time to think it over, I believe that the thing that really upsets me isn't so much the eye troubles, but the demeanor of some of the doctors that we deal with.  The person we saw today was a pediatric opthamologist, so you'd think they would be respectful of children, but no, he was loud and invasive, and Paul and I had to tell him to respect Sebastian several times.  The final straw was when he really wanted Sebi to hold his head still and just try to move his eyes to the sides, and instead of telling Paul and I what he wanted and letting us all brainstorm a quick solution to get Sebi to do this, he just grabbed his head, really hard, and tried to hold it still.  This was after Sebi was already crying his eyes out from being so afraid.  I was furious, and Paul (my husband) almost lost it.  I mean, can you imagine a 'grown up' doctor treating an adult patient in this way?  It would never be tolerated.  But, it just seems like children are not given any respect, and especially children who have to have lots of invasive things done to them.  When Sebi was in the NICU as a baby, I saw nurses handle infants so roughly it made me cry (and stick by Sebi like glue), and as he has gotten older and we've experienced more doctors, it's rare to find one that really respects that children need to be treated kindly.  Didn't they ever read 'Horton Hears a Who'?  "A person's a person, no matter how small."
             
            Anyway, what a diatribe!  Sorry!  It's just that things like today make me realize that I really need to remain a strong advocate for Sebi, until he can be an advocate for himself.
             
            How is your husband's pneumonia doing?  I had double pneumonia 8 years ago, and it was so draining.  You all are in my thoughts.
             
            Kristin

            ANN MILLER <dm4462@...> wrote:
            Hi Kristin,
             
            I would get a second opinion.  Our doctor said it was due to Kyle having weak eye muscles.  We waited three months to see if there was any change.  Kyle's improved as he got stronger.  My cousin' s little girl had to wear a patch over her good eye for 3 months and then had eye therapy.  Her's improved after 8 months.  I'm not saying he will not need surgery, but I would check into everything else first.  Surgery would be my last choice.
             
            Hope everything turns out ok for Sebastian.  We will pray he only needs therapy.
             
            Take care,
             
            Darlene 
            ----- Original Message -----
            Sent: Thursday, March 31, 2005 3:58 PM
            Subject: Re: [Myotubular_Myopathy] Update Kyle - nurse, etc

            Hi Darlene!
             
            Thank you for all your advice regarding Sebastian's eye issues.  We took him to the pediatric opthamologist today, and they said that he has exotropia.  This basically means that when he is looking far away, one of his eyes focuses, and this other looks slightly away.  It varies from one eye to the other, so it shouldn't impact the ability for his brain to use both eyes, but the doctor basically told us that if we didn't have surgery soon to correct it, there would be an increased risk of additional surgeries in the future.  I am so mad, because as soon as we got home, I checked the internet to see what the typical diagnosis for this type of condition is, and they ALL said that surgery should be the last resort!  So, now I'm trying the find a second doctor in the Denver area that specializes in both children and therapy-vs-surgery.  Grrrr!!
             
            I guess the thing that upsets me the most is Sebi is so traumatized by going to the doctor, and this doc was recommended through the muscle clinic at the hospital, and the doctor told me directly that he has never worked with the child with a muscle problem!  So, although I think that Sebi does have this eye condition, now I'm wondering if any of it could be related to the MTM.  My 28 year old brother also has MTM, and he has very little movement in his eyes (it kind of just looks like he is staring at you, if this makes sense).  Anyway, you said that your doctor told you that Kyle's eye turning out was related to the MTM, right?  Could you tell me a little more about this (how much did it turn out, was it just one eye all the time, etc), and if it has improved for Kyle w/o surgery?
             
            Thank you!
            Kristin


            ANN MILLER <dm4462@...> wrote:
            Hi Kristin,
            This is the first time we have had nursing since I've had Kyle with me.  Where we use to live, when his parents lived with us we had nursing for 2 months, they said it was too far to travel.   Six months ago the school said we needed a nurse for Kyle to start preschool, we started looking, the nurses said the insurance co. wasn't paying enough.  In January we found one that was willing to work for what they pay.  Then this other one started recently. 
             
            Kyle was like Sebastian too.  He didn't like being in crowds, being around people he didn't know.  He would take his trach out it I left him with his father.  Did not like the doctors, would hold his breath, cry, anything to try and get out of there.  I started taking him shopping, to the library for toddler hour (he loves the library), out to eat, to Baltimore Habor, anyplace I knew alot  of people would be.  Now he loves going places and meeting people.    When we go to the doctors now we take his favorite book or toy.  The nurses give him paper and pen to write with, stickers, play with him, etc.  He loves the attention now.  He still doesn't like me leaving him any length of time.    Weekend before last we went to meeting without him, I left him with his father.  When we got back home he called me into his room, gave me a hug then slapped my hand and signed bad mawmaw. 
             
            Kyle has gone to the eye doctors since he was 10 months old.  He has dry eyes and sleeps with them half open.  He also had a lazy eye that drifted too (that was from the weak muscles).  They examined him and said he was also alittle nearsighted and would need glasses in the near future.  He went ever 6 months until this last visit now he will go once a year.   Find out if there were any eye problems in past generations.  The dry eyes and sleeping with them half open goes back 3 generations in our family.    
             
            Well, today I let the new nurse go.  I had to take Kyle's grandfather to the ER.  He was having trouble breathing.  I left her at home with Kyle about 5-6 hours alone.  When I got home she was coming out the door, met me in the yard, ready to leave, said Kyle was ok, not much of a problem just kept setting the vent off HIGH PRESSURE.  When I went in the house he was signing help and pulled the vent circuit off.  When I went to him it was full of sacretions, not just a little but about eight inches down the hoses.  She had never checked the lines or anything to see why the vent was alarming.  She just
            assumed Kyle was doing it.    So when Kyle tells me he doesn't like someone, I'm going to listen from now on.  I guess he not only is smart for his age, he also has a six sense about things.
             
            Hope Sebastian is doing good.
             
            Take care,
             
            Darlene
             
             
             
            Sent: Saturday, March 26, 2005 1:28 PM
            Subject: Re: [Myotubular_Myopathy] Update Kyle - nurse, etc

            Hi Darlene!
             
            I didn't know whether to laugh or cry about Kyle's new nurse - it really sounds like he doesn't like her, and your description of all his antics is so funny!  But, I can hear your frustration coming through, too, and I don't know what to say.  Sebastian doesn't have a nurse, but he is really fearful of EVERYone who isn't Paul, our close relatives or myself.  He is especially hard to calm down in any kind of medical office, and I haven't figured out what to do about this.  It's something that I really worry about.  In that way, I'm proud of Kyle for having so much spark!!  He sounds so fiesty with her, and I also love that he is so outgoing in school - what a cutie!!
             
            We think that Sebi might need glasses, too.  He has a bit of 'eye drift' (if you understand what I mean).  When he is looking far away, one of his eyes tends to not focus and drift out.  We have an appointment with the pediatric eye doctor next week, and I'm interested to see what they say.  How did you know that Kyle was nearsighted?  Did his eyes drift, too?  If you have any advice for me going into the eye doctor, that would be great, because I know they are not going to have seen another boy with MTM.
             
            I'm so sorry to hear that his grandad has double pneumonia!  The description of them sitting together to watch tv at night sounded so nice and sweet.  I hope he gets well soon!
             
            Take care,
            Kristin

            Darlene <dm4462@...> wrote:

            Hi all,

            Well, things are about the same.  Kyle doesn't ignore her anymore. 
            Now he is just playing tricks on her.  He hides things from her.  He
            will tell her he wants to be on the floor then turn around and tell
            her he wants back in his chair.  Doesn't want her to suction him. 
            Tells her no and puts his hand over his trach.  Still sets the vent
            and pulsox alarms off.  When she puts his AFO's on he will take his
            foot out before she can get his shoe on.  Will not take a nap while
            she is here.  I think he's afraid he might miss something to do to
            her.  Takes her glasses from her.  I wear glasses and so does the
            other nurse and he doesn't do that to us or anyone else who wears
            glasses.  I have tryed everything I can think off.  I've made him
            stay in his room with her for several hours, told him he had to be
            nice or would not go outside (his favorite place), left the house
            for half the day so they are alone.  Nothing works! He is just a
            little stinker with her. 

            Kyle's eyes are worse.  We are getting a stronger prescription for
            nearsightness.  You would not believe they tryed to charge me $20.00
            fee for using his old frames (which are still in good shape and fit
            fine).  They wanted me to buy new frames.  I told them I wanted to
            use the old ones and would go somewhere else if I had to pay the
            fee.  They dropped the fee. 

            In o/t and p/t this week, they are teaching him to get in and out of
            his manual chair.  He has undoing the seatbelt down pat.  He can get
            out but still having trouble getting in, which is understandable. 
            His p/t said it will take him a little while to get use to it. 
            Trying to pull all his weight up is alot for him. 

            School is still giving us a hard time.  But I'm not giving up. 

            Kyle's granddad is sick with double pneumonia.  I'm having a hard
            time keeping Kyle away from him.  He doesn't understand why he can't
            sit in his lap to watch TV(which is their favorite pass time in the
            evenings). 

            All in all, Kyle is doing great!  He is getting stronger.

            Hope everyone is doing good.  Have a Happy Easter!

            Love,

            Darlene and Kyle 






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          • connie guinn
            Nice to hear from you, Jess!! How is Jack doing these days? Benjamin is doing well- 100% recovered- no repercussions must run- hugs and kisses to all!
            Message 5 of 12 , Apr 6, 2005
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              Nice to hear from you, Jess!!
              How is Jack doing these days?  Benjamin is doing well-  100% recovered- no repercussions
               
               
              must run- hugs and kisses to all!
                                                      -Connie
               


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