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Re: Digest Number 89

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  • KDE2828@xxx.xxx
    Jolene, My son, Michael DS 13, had a problem with sleep apnea. He would sleep sitting up and flopped forward a lot of the time due to the size of his tongue
    Message 1 of 16 , Aug 1, 1999
      Jolene,
      My son, Michael DS 13, had a problem with sleep apnea. He would sleep
      sitting up and "flopped" forward a lot of the time due to the size of his
      tongue and the size of his tonsils obstructing his airway. By leaning
      forward he could correct the problem and sleep better. Our ENT suggested
      removing his tonsils, which we did, and he now sleeps better. We do still
      find him flopped forward from time to time though. Hope this helps.
      Kim
    • Luvsno7485@xxx.xxx
      Hi Kim, Jennifer did have her tonsils and adnoids taken out, but she still pauses when she sleeps, she also sleeps flopped over sometimes. We go to the
      Message 2 of 16 , Aug 2, 1999
        Hi Kim, Jennifer did have her tonsils and adnoids taken out, but she still
        pauses when she sleeps, she also sleeps flopped over sometimes. We go to the
        Hospital on Thursday the 5th, I will let you know what happens, thanks for
        the info.
        Jolene mom to Jennifer, 13
      • Wildwards@xxx.xxx
        In a message dated 8/2/99 11:57:31 PM Eastern Daylight Time, Luvsno7485@aol.com writes: We have such a large
        Message 3 of 16 , Aug 4, 1999
          In a message dated 8/2/99 11:57:31 PM Eastern Daylight Time,
          Luvsno7485@... writes:

          << she also sleeps flopped over sometimes >>

          We have such a large number of kids with DS here who sleep "folded over" and
          are restless sleepers that we discuss this topic often. A heart surgeon on
          our board was AMAZED when we told him this fact. Is it the attempt to get
          air in their bodies at night, is it low tone, does it go away when apnea is
          treated, do floppy airways play a part? And we have all read literature that
          states continued loss of oxygen at night can make the heart overwork and
          become enlarged. How many people with older family members who have DS but
          no defect would know to have their hearts checked every so often to make sure
          they have not become enlarged because of sleep difficulties, as this is not
          on any medical guidelines that I am aware of.

          My daughter used to sleep folded over, every night the last thing I did
          before I went to bed was check and unfold her. That all but stopped once she
          had a T & A operation.
          I think she would sit up in her sleep in an effort to breath and then just
          lay forward and go back to sleep, with her head on her knees!

          I was wondering, how many of your children sleep on their stomachs?

          Cheryl
        • Carolyn Long
          Cheryl, Darran was the same until he also had a&T operation. There are times when Darran does sleep on his stomache, most of the time tho is back or side . I
          Message 4 of 16 , Aug 4, 1999
            Cheryl,

            Darran was the same until he also had a&T operation. There are times
            when Darran does sleep on his stomache, most of the time tho is back or side
            . I am learning so much from being on here with all of you . I didn't know
            about having Darran heart checked for enlargement either, I never knew about
            the Alz thing or Lukemia either , We have just gotten new Doc and boy is he
            gonna love me next month we have our first visit, and I have folder full of
            all that new that I have leaned on here ...........HAHAHAHAHA
            Carolyn-Darran 17


            >From: Wildwards@...
            >Reply-To: DS_Teens_Plus@onelist.com
            >To: DS_Teens_Plus@onelist.com
            >Subject: Re: [DS_Teens_Plus] Digest Number 89
            >Date: Wed, 4 Aug 1999 06:53:07 EDT
            >
            >From: Wildwards@...
            >
            >In a message dated 8/2/99 11:57:31 PM Eastern Daylight Time,
            >Luvsno7485@... writes:
            >
            ><< she also sleeps flopped over sometimes >>
            >
            >We have such a large number of kids with DS here who sleep "folded over"
            >and
            >are restless sleepers that we discuss this topic often. A heart surgeon on
            >our board was AMAZED when we told him this fact. Is it the attempt to get
            >air in their bodies at night, is it low tone, does it go away when apnea is
            >treated, do floppy airways play a part? And we have all read literature
            >that
            >states continued loss of oxygen at night can make the heart overwork and
            >become enlarged. How many people with older family members who have DS but
            >no defect would know to have their hearts checked every so often to make
            >sure
            >they have not become enlarged because of sleep difficulties, as this is not
            >on any medical guidelines that I am aware of.
            >
            >My daughter used to sleep folded over, every night the last thing I did
            >before I went to bed was check and unfold her. That all but stopped once
            >she
            >had a T & A operation.
            >I think she would sit up in her sleep in an effort to breath and then just
            >lay forward and go back to sleep, with her head on her knees!
            >
            >I was wondering, how many of your children sleep on their stomachs?
            >
            >Cheryl
            >
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          • NEHolroyd@xxx.xxx
            In a message dated 8/4/99 6:53:28 AM Eastern Daylight Time, Wildwards@aol.com writes:
            Message 5 of 16 , Aug 4, 1999
              In a message dated 8/4/99 6:53:28 AM Eastern Daylight Time, Wildwards@...
              writes:

              << I was wondering, how many of your children sleep on their stomachs? >>

              Sheila does.

              nancy
            • KDE2828@aol.com
              Jolene, Please let me know what you find out about your daughter. I have not had my son tested because I thought the problem had been fixed . I am curious
              Message 6 of 16 , Aug 6, 1999
                Jolene,
                Please let me know what you find out about your daughter. I have not had my
                son tested because I thought the problem had been "fixed". I am curious to
                find out your results. Good Luck!!
                Kim Mom to Michael 13
              • KDE2828@aol.com
                Cheryl, As I mentioned in earlier comments, Michael 13, sleeps folded forward. He has never slept on his stomach that I am aware of, he has always slept on
                Message 7 of 16 , Aug 6, 1999
                  Cheryl,
                  As I mentioned in earlier comments, Michael 13, sleeps folded forward. He
                  has never slept on his stomach that I am aware of, he has always slept on his
                  back or folded over. This is very interesting.... should we seek additional
                  cardiac consultation as we were told although mike has a murmur, no other
                  heart problems were identified? He also sleeps sitting up at times.
                  Kim
                • Luvsno7485@aol.com
                  Hi Kim, We got through the sleep study just fine, the worst part was the nurse taking off the tape that the guy put on her face to hold the wires below her
                  Message 8 of 16 , Aug 6, 1999
                    Hi Kim,
                    We got through the sleep study just fine, the worst part was the nurse taking
                    off the tape that the guy put on her face to hold the wires below her nose.
                    She cried it hurt so bad, it didnt last very long, but it hurts to have tape
                    taken off you face or anywhere for that matter.
                    We had the machine put on her at 9 pm on Thursday and the nurse took it off
                    at 6:30 am on Friday, then we got the heck out of there and went back to the
                    motel where my mom and son were staying so Jennifer could go swimming and eat
                    breakfast.
                    We got home about 3 pm, and Dr. Noris called me after I got home and said
                    Jennifers test turned out great, she has no abstract breathing going on. I am
                    glad we did the test anyway, I wasnt sure if it was worth it, because the doc
                    here we see said after the 2 oxygen tests they did here in Wenatchee told
                    them that her breathing was fine.
                    But I didnt feel comfortable with just that, so better safe than sorry.
                    So now I head back to Childrens the end of Sept. to see Doc. Weiss, for
                    Jennifers eyes, never ending doc app. but I would rather go over to Seattle
                    to Childrens than see the docs here that are not helping much in some areas.
                    I am glad this is over, thanks for caring.
                    Jolene
                  • Luvsno7485@aol.com
                    Kim, I also put you on my buddie list so when you are on line I can tell and you and I can talk, I also have aol, so its easy. Jolene
                    Message 9 of 16 , Aug 6, 1999
                      Kim, I also put you on my buddie list so when you are on line I can tell and
                      you and I can talk, I also have aol, so its easy. Jolene
                    • Theresa KD
                      Shannon occasionally sleeps sitting up usually sleeps on her back she had a t&A at 7 years she is 14 she is a restless sleeper except when she sleeps on the
                      Message 10 of 16 , Aug 16, 1999
                        Shannon occasionally sleeps sitting up usually sleeps on her back she had a
                        t&A at 7 years she is 14 she is a restless sleeper except when she sleeps on
                        the couch. That Kind of contains her.


                        >From: Wildwards@...
                        >Reply-To: DS_Teens_Plus@onelist.com
                        >To: DS_Teens_Plus@onelist.com
                        >Subject: Re: [DS_Teens_Plus] Digest Number 89
                        >Date: Wed, 4 Aug 1999 06:53:07 EDT
                        >
                        >From: Wildwards@...
                        >
                        >In a message dated 8/2/99 11:57:31 PM Eastern Daylight Time,
                        >Luvsno7485@... writes:
                        >
                        ><< she also sleeps flopped over sometimes >>
                        >
                        >We have such a large number of kids with DS here who sleep "folded over"
                        >and
                        >are restless sleepers that we discuss this topic often. A heart surgeon on
                        >our board was AMAZED when we told him this fact. Is it the attempt to get
                        >air in their bodies at night, is it low tone, does it go away when apnea is
                        >treated, do floppy airways play a part? And we have all read literature
                        >that
                        >states continued loss of oxygen at night can make the heart overwork and
                        >become enlarged. How many people with older family members who have DS but
                        >no defect would know to have their hearts checked every so often to make
                        >sure
                        >they have not become enlarged because of sleep difficulties, as this is not
                        >on any medical guidelines that I am aware of.
                        >
                        >My daughter used to sleep folded over, every night the last thing I did
                        >before I went to bed was check and unfold her. That all but stopped once
                        >she
                        >had a T & A operation.
                        >I think she would sit up in her sleep in an effort to breath and then just
                        >lay forward and go back to sleep, with her head on her knees!
                        >
                        >I was wondering, how many of your children sleep on their stomachs?
                        >
                        >Cheryl
                        >
                        >--------------------------- ONElist Sponsor ----------------------------
                        >
                        >You can WIN $100 to Amazon.com!
                        >If you join ONElist�s FRIENDS & FAMILY program. For details, go to
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                      • christine sanford
                        I have two daughters with DS megan 16 always slept folded over she had sleep apnea. we had her tonsils and adnoids out now she doesn t do it as often but
                        Message 11 of 16 , Aug 18, 1999
                          I have two daughters with DS megan 16 always slept folded over
                          she had sleep apnea. we had her tonsils and adnoids out now she doesn't do
                          it as often but still sleeps that way sometimes. our other daughter sarah
                          is 10 she has had open heart surgery however she sleeps flat on her back all
                          the time,
                          christine from new brunswick


                          >From: "Theresa KD" <ireland4ever1@...>
                          >Reply-To: DS_Teens_Plus@onelist.com
                          >To: DS_Teens_Plus@onelist.com
                          >Subject: Re: [DS_Teens_Plus] Digest Number 89
                          >Date: Mon, 16 Aug 1999 08:35:18 PDT
                          >
                          >From: "Theresa KD" <ireland4ever1@...>
                          >
                          >Shannon occasionally sleeps sitting up usually sleeps on her back she had a
                          >t&A at 7 years she is 14 she is a restless sleeper except when she sleeps
                          >on
                          >the couch. That Kind of contains her.
                          >
                          >
                          >>From: Wildwards@...
                          >>Reply-To: DS_Teens_Plus@onelist.com
                          >>To: DS_Teens_Plus@onelist.com
                          >>Subject: Re: [DS_Teens_Plus] Digest Number 89
                          >>Date: Wed, 4 Aug 1999 06:53:07 EDT
                          >>
                          >>From: Wildwards@...
                          >>
                          >>In a message dated 8/2/99 11:57:31 PM Eastern Daylight Time,
                          >>Luvsno7485@... writes:
                          >>
                          >><< she also sleeps flopped over sometimes >>
                          >>
                          >>We have such a large number of kids with DS here who sleep "folded over"
                          >>and
                          >>are restless sleepers that we discuss this topic often. A heart surgeon
                          >>on
                          >>our board was AMAZED when we told him this fact. Is it the attempt to get
                          >>air in their bodies at night, is it low tone, does it go away when apnea
                          >>is
                          >>treated, do floppy airways play a part? And we have all read literature
                          >>that
                          >>states continued loss of oxygen at night can make the heart overwork and
                          >>become enlarged. How many people with older family members who have DS
                          >>but
                          >>no defect would know to have their hearts checked every so often to make
                          >>sure
                          >>they have not become enlarged because of sleep difficulties, as this is
                          >>not
                          >>on any medical guidelines that I am aware of.
                          >>
                          >>My daughter used to sleep folded over, every night the last thing I did
                          >>before I went to bed was check and unfold her. That all but stopped once
                          >>she
                          >>had a T & A operation.
                          >>I think she would sit up in her sleep in an effort to breath and then just
                          >>lay forward and go back to sleep, with her head on her knees!
                          >>
                          >>I was wondering, how many of your children sleep on their stomachs?
                          >>
                          >>Cheryl
                          >>
                          >>--------------------------- ONElist Sponsor ----------------------------
                          >>
                          >>You can WIN $100 to Amazon.com!
                          >>If you join ONElist�s FRIENDS & FAMILY program. For details, go to
                          >>http://www.onelist.com/info/onereachsplash3.html
                          >>
                          >>------------------------------------------------------------------------
                          >
                          >
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                        • Carolyn Long
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                          Message 12 of 16 , Aug 19, 1999
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