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Re: [Families of Angelman Syndrome] Pre-Bedtime Crazies!!

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  • Thelma Jones
    We too have this nightly, but a few months ago I started making my son lay in my arms and I hold him tightly and cover him up with a blanket within a few
    Message 1 of 8 , Jan 31, 2006
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      We too have this nightly, but a few months ago I started making my son lay
      in my arms and I hold him tightly and cover him up with a blanket within a
      few minutes almost always he is out, like a log..his test they say were
      negative but I know he has AS! He was diagnosed very early with SID.
      Now it is like clock work, when he is ready for bed he comes right to me and
      crawls up in my lap. My hubby and I kid around, what will we do when he is
      way older, right now he is just 7. ;0)

      Tammy


      >From: Karen Newman <daridakn@...>
      >Reply-To: familiesofangelmansyndrome@yahoogroups.com
      >To: familiesofangelmansyndrome@yahoogroups.com
      >Subject: Re: [Families of Angelman Syndrome] Pre-Bedtime Crazies!!
      >Date: Sat, 28 Jan 2006 23:04:17 -0800 (PST)
      >
      >This is what I call their last "wind". They just can't calm their bodies
      >down sometimes. What I do is turn the lights down low, say, "shhhh" and
      >"it's ok", and hold them very, very tight. This is called "deep pressure".
      > Angels suffer from Sensory Integration Disorder, and deep pressure and
      >being confined calms them. Even though they may toss and turn and scream
      >at first, it usually eventually works. Also afterwards a good foot rub
      >with lotion works as well.
      > Karen
      >
      >Maria <mkwiscombe@...> wrote:
      > I'm just wondering if anyone else has experienced this with their
      >child. About 6:00 p.m. Lydia seems like her body gets so electrically
      >charged, almost like she was going to have a seizure. This goes on
      >for about 2-3 hours. She's not bouncing off the walls, she just can't
      >hardly sit, can't stop talking, she pinches and scratches, but not
      >because she's trying to be mean, it seems like she's not sure what to
      >do with herself. I am just wondering if this is some sort of seizure
      >activity or something else. It has been going of for a couple of
      >months, but just became clear to me as to what exactly was going on a
      >couple of weeks ago. If your child has experienced this, have you had
      >an eeg done to see if there is any irregular activity going on during
      >this time? We did try and do an overnight sleep study, thinking it
      >was something else, but she didn't sleep! (Duh!) She has been seizure
      >free (as far as we know) since she was 18 months old.
      >
      >Maria, wife, mother to Lydia and her 5 siblings!
      >
      >
      >
      >
      >
      >
      >
      >---------------------------------
      > YAHOO! GROUPS LINKS
      >
      >
      > Visit your group "familiesofangelmansyndrome" on the web.
      >
      > To unsubscribe from this group, send an email to:
      > familiesofangelmansyndrome-unsubscribe@yahoogroups.com
      >
      > Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
      >
      >
      >---------------------------------
      >
      >
      >
      >
      >
      >---------------------------------
      >Bring words and photos together (easily) with
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      >[Non-text portions of this message have been removed]
      >

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    • sara good
      I give my son who is almost 3 over the counter Melatonin. It seems to work well. But, everyone is different. I am blessed it has worked as well as it did.
      Message 2 of 8 , Feb 2, 2006
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        I give my son who is almost 3 over the counter Melatonin. It seems to work well. But, everyone is different. I am blessed it has worked as well as it did. Before my son turned two he was up all night. And I am sure you can relate. He would take these little power naps every few hours. He would be out for maybe 15 minutes and then awake with full energy. If I did not come to him he would cry and loud. His neurologist suggested Melatonin before he started Joshua on any drugs to induce sleep. I waited for a month and gave him Melatonin nightly. It took a while for his body to regulate to the Melatonin but, now he sleeps and well. And he has been sleeping good for close to a year now. Routine is key as well. I feed him supper around 7:00 p.m. and I crush the Melatonin and slip it in his food. At 7:30 we take our bath. And at 8:00 I lay him down. He usually falls asleep within a half hour and wakes around 6:30 a.m. Now there are times he will wake up durning the night
        but, thank God he can get himself back to sleep most of the time.

        I hope this may help. Talk to your doctor about it.

        Thelma Jones <thelma443@...> wrote:
        We too have this nightly, but a few months ago I started making my son lay
        in my arms and I hold him tightly and cover him up with a blanket within a
        few minutes almost always he is out, like a log..his test they say were
        negative but I know he has AS! He was diagnosed very early with SID.
        Now it is like clock work, when he is ready for bed he comes right to me and
        crawls up in my lap. My hubby and I kid around, what will we do when he is
        way older, right now he is just 7. ;0)

        Tammy


        >From: Karen Newman
        >Reply-To: familiesofangelmansyndrome@yahoogroups.com
        >To: familiesofangelmansyndrome@yahoogroups.com
        >Subject: Re: [Families of Angelman Syndrome] Pre-Bedtime Crazies!!
        >Date: Sat, 28 Jan 2006 23:04:17 -0800 (PST)
        >
        >This is what I call their last "wind". They just can't calm their bodies
        >down sometimes. What I do is turn the lights down low, say, "shhhh" and
        >"it's ok", and hold them very, very tight. This is called "deep pressure".
        > Angels suffer from Sensory Integration Disorder, and deep pressure and
        >being confined calms them. Even though they may toss and turn and scream
        >at first, it usually eventually works. Also afterwards a good foot rub
        >with lotion works as well.
        > Karen
        >
        >Maria wrote:
        > I'm just wondering if anyone else has experienced this with their
        >child. About 6:00 p.m. Lydia seems like her body gets so electrically
        >charged, almost like she was going to have a seizure. This goes on
        >for about 2-3 hours. She's not bouncing off the walls, she just can't
        >hardly sit, can't stop talking, she pinches and scratches, but not
        >because she's trying to be mean, it seems like she's not sure what to
        >do with herself. I am just wondering if this is some sort of seizure
        >activity or something else. It has been going of for a couple of
        >months, but just became clear to me as to what exactly was going on a
        >couple of weeks ago. If your child has experienced this, have you had
        >an eeg done to see if there is any irregular activity going on during
        >this time? We did try and do an overnight sleep study, thinking it
        >was something else, but she didn't sleep! (Duh!) She has been seizure
        >free (as far as we know) since she was 18 months old.
        >
        >Maria, wife, mother to Lydia and her 5 siblings!
        >
        >
        >
        >
        >
        >
        >
        >---------------------------------
        > YAHOO! GROUPS LINKS
        >
        >
        > Visit your group "familiesofangelmansyndrome" on the web.
        >
        > To unsubscribe from this group, send an email to:
        > familiesofangelmansyndrome-unsubscribe@yahoogroups.com
        >
        > Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
        >
        >
        >---------------------------------
        >
        >
        >
        >
        >
        >---------------------------------
        >Bring words and photos together (easily) with
        > PhotoMail - it's free and works with Yahoo! Mail.
        >
        >[Non-text portions of this message have been removed]
        >

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        [Non-text portions of this message have been removed]
      • Maria
        I have been wondering if the melatonin needs to build up in their systems, because it didn t work the few nights we tried it. I actually missed my doctor s
        Message 3 of 8 , Feb 2, 2006
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          I have been wondering if the melatonin needs to build up in their
          systems, because it didn't work the few nights we tried it. I
          actually missed my doctor's call this afternoon! Hopefully he will
          call back and we can discuss this more in length.

          Thanks for the encouragement!

          Maria

          --- In familiesofangelmansyndrome@yahoogroups.com, sara good
          <iamdonna42701@...> wrote:
          >
          > I give my son who is almost 3 over the counter Melatonin. It
          seems to work well. But, everyone is different. I am blessed it
          has worked as well as it did. Before my son turned two he was up
          all night. And I am sure you can relate. He would take these
          little power naps every few hours. He would be out for maybe 15
          minutes and then awake with full energy. If I did not come to him
          he would cry and loud. His neurologist suggested Melatonin before
          he started Joshua on any drugs to induce sleep. I waited for a
          month and gave him Melatonin nightly. It took a while for his body
          to regulate to the Melatonin but, now he sleeps and well. And he
          has been sleeping good for close to a year now. Routine is key as
          well. I feed him supper around 7:00 p.m. and I crush the Melatonin
          and slip it in his food. At 7:30 we take our bath. And at 8:00 I
          lay him down. He usually falls asleep within a half hour and wakes
          around 6:30 a.m. Now there are times he will wake up durning the
          night
          > but, thank God he can get himself back to sleep most of the
          time.
          >
          > I hope this may help. Talk to your doctor about it.
          >
          > Thelma Jones <thelma443@...> wrote:
          > We too have this nightly, but a few months ago I started making
          my son lay
          > in my arms and I hold him tightly and cover him up with a blanket
          within a
          > few minutes almost always he is out, like a log..his test they say
          were
          > negative but I know he has AS! He was diagnosed very early with
          SID.
          > Now it is like clock work, when he is ready for bed he comes right
          to me and
          > crawls up in my lap. My hubby and I kid around, what will we do
          when he is
          > way older, right now he is just 7. ;0)
          >
          > Tammy
          >
          >
          > >From: Karen Newman
          > >Reply-To: familiesofangelmansyndrome@yahoogroups.com
          > >To: familiesofangelmansyndrome@yahoogroups.com
          > >Subject: Re: [Families of Angelman Syndrome] Pre-Bedtime Crazies!!
          > >Date: Sat, 28 Jan 2006 23:04:17 -0800 (PST)
          > >
          > >This is what I call their last "wind". They just can't calm their
          bodies
          > >down sometimes. What I do is turn the lights down low,
          say, "shhhh" and
          > >"it's ok", and hold them very, very tight. This is called "deep
          pressure".
          > > Angels suffer from Sensory Integration Disorder, and deep
          pressure and
          > >being confined calms them. Even though they may toss and turn and
          scream
          > >at first, it usually eventually works. Also afterwards a good
          foot rub
          > >with lotion works as well.
          > > Karen
          > >
          > >Maria wrote:
          > > I'm just wondering if anyone else has experienced this with their
          > >child. About 6:00 p.m. Lydia seems like her body gets so
          electrically
          > >charged, almost like she was going to have a seizure. This goes on
          > >for about 2-3 hours. She's not bouncing off the walls, she just
          can't
          > >hardly sit, can't stop talking, she pinches and scratches, but not
          > >because she's trying to be mean, it seems like she's not sure
          what to
          > >do with herself. I am just wondering if this is some sort of
          seizure
          > >activity or something else. It has been going of for a couple of
          > >months, but just became clear to me as to what exactly was going
          on a
          > >couple of weeks ago. If your child has experienced this, have you
          had
          > >an eeg done to see if there is any irregular activity going on
          during
          > >this time? We did try and do an overnight sleep study, thinking it
          > >was something else, but she didn't sleep! (Duh!) She has been
          seizure
          > >free (as far as we know) since she was 18 months old.
          > >
          > >Maria, wife, mother to Lydia and her 5 siblings!
          > >
          > >
          > >
          > >
          > >
          > >
          > >
          > >---------------------------------
          > > YAHOO! GROUPS LINKS
          > >
          > >
          > > Visit your group "familiesofangelmansyndrome" on the web.
          > >
          > > To unsubscribe from this group, send an email to:
          > > familiesofangelmansyndrome-unsubscribe@yahoogroups.com
          > >
          > > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
          Service.
          > >
          > >
          > >---------------------------------
          > >
          > >
          > >
          > >
          > >
          > >---------------------------------
          > >Bring words and photos together (easily) with
          > > PhotoMail - it's free and works with Yahoo! Mail.
          > >
          > >[Non-text portions of this message have been removed]
          > >
          >
          > _________________________________________________________________
          > Is your PC infected? Get a FREE online computer virus scan from
          McAfee®
          > Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?
          cid=3963
          >
          >
          >
          >
          > Yahoo! Groups Links
          >
          >
          >
          >
          >
          >
          >
          >
          >
          > ---------------------------------
          > Do you Yahoo!?
          > With a free 1 GB, there's more in store with Yahoo! Mail.
          >
          > [Non-text portions of this message have been removed]
          >
        • ltricblu
          Our pediatrician had told us that the melatonin takes about a week to build up in the system. For our son, the melatonin only works for about a week after it
          Message 4 of 8 , Feb 3, 2006
          • 0 Attachment
            Our pediatrician had told us that the melatonin takes about a week to
            build up in the system. For our son, the melatonin only works for
            about a week after it builds up and then for some reason it stops
            working, so we take him off of it for about two weeks and then start
            over.

            Nadia


            --- In familiesofangelmansyndrome@yahoogroups.com, "Maria"
            <mkwiscombe@...> wrote:
            >
            > I have been wondering if the melatonin needs to build up in their
            > systems, because it didn't work the few nights we tried it. I
            > actually missed my doctor's call this afternoon! Hopefully he will
            > call back and we can discuss this more in length.
            >
            > Thanks for the encouragement!
            >
            > Maria
            >
            > --- In familiesofangelmansyndrome@yahoogroups.com, sara good
            > <iamdonna42701@> wrote:
            > >
            > > I give my son who is almost 3 over the counter Melatonin. It
            > seems to work well. But, everyone is different. I am blessed it
            > has worked as well as it did. Before my son turned two he was up
            > all night. And I am sure you can relate. He would take these
            > little power naps every few hours. He would be out for maybe 15
            > minutes and then awake with full energy. If I did not come to him
            > he would cry and loud. His neurologist suggested Melatonin before
            > he started Joshua on any drugs to induce sleep. I waited for a
            > month and gave him Melatonin nightly. It took a while for his body
            > to regulate to the Melatonin but, now he sleeps and well. And he
            > has been sleeping good for close to a year now. Routine is key as
            > well. I feed him supper around 7:00 p.m. and I crush the Melatonin
            > and slip it in his food. At 7:30 we take our bath. And at 8:00 I
            > lay him down. He usually falls asleep within a half hour and wakes
            > around 6:30 a.m. Now there are times he will wake up durning the
            > night
            > > but, thank God he can get himself back to sleep most of the
            > time.
            > >
            > > I hope this may help. Talk to your doctor about it.
            > >
            > > Thelma Jones <thelma443@> wrote:
            > > We too have this nightly, but a few months ago I started making
            > my son lay
            > > in my arms and I hold him tightly and cover him up with a blanket
            > within a
            > > few minutes almost always he is out, like a log..his test they
            say
            > were
            > > negative but I know he has AS! He was diagnosed very early with
            > SID.
            > > Now it is like clock work, when he is ready for bed he comes
            right
            > to me and
            > > crawls up in my lap. My hubby and I kid around, what will we do
            > when he is
            > > way older, right now he is just 7. ;0)
            > >
            > > Tammy
            > >
            > >
            > > >From: Karen Newman
            > > >Reply-To: familiesofangelmansyndrome@yahoogroups.com
            > > >To: familiesofangelmansyndrome@yahoogroups.com
            > > >Subject: Re: [Families of Angelman Syndrome] Pre-Bedtime
            Crazies!!
            > > >Date: Sat, 28 Jan 2006 23:04:17 -0800 (PST)
            > > >
            > > >This is what I call their last "wind". They just can't calm
            their
            > bodies
            > > >down sometimes. What I do is turn the lights down low,
            > say, "shhhh" and
            > > >"it's ok", and hold them very, very tight. This is called "deep
            > pressure".
            > > > Angels suffer from Sensory Integration Disorder, and deep
            > pressure and
            > > >being confined calms them. Even though they may toss and turn
            and
            > scream
            > > >at first, it usually eventually works. Also afterwards a good
            > foot rub
            > > >with lotion works as well.
            > > > Karen
            > > >
            > > >Maria wrote:
            > > > I'm just wondering if anyone else has experienced this with
            their
            > > >child. About 6:00 p.m. Lydia seems like her body gets so
            > electrically
            > > >charged, almost like she was going to have a seizure. This goes
            on
            > > >for about 2-3 hours. She's not bouncing off the walls, she just
            > can't
            > > >hardly sit, can't stop talking, she pinches and scratches, but
            not
            > > >because she's trying to be mean, it seems like she's not sure
            > what to
            > > >do with herself. I am just wondering if this is some sort of
            > seizure
            > > >activity or something else. It has been going of for a couple of
            > > >months, but just became clear to me as to what exactly was going
            > on a
            > > >couple of weeks ago. If your child has experienced this, have
            you
            > had
            > > >an eeg done to see if there is any irregular activity going on
            > during
            > > >this time? We did try and do an overnight sleep study, thinking
            it
            > > >was something else, but she didn't sleep! (Duh!) She has been
            > seizure
            > > >free (as far as we know) since she was 18 months old.
            > > >
            > > >Maria, wife, mother to Lydia and her 5 siblings!
            > > >
            > > >
            > > >
            > > >
            > > >
            > > >
            > > >
            > > >---------------------------------
            > > > YAHOO! GROUPS LINKS
            > > >
            > > >
            > > > Visit your group "familiesofangelmansyndrome" on the web.
            > > >
            > > > To unsubscribe from this group, send an email to:
            > > > familiesofangelmansyndrome-unsubscribe@yahoogroups.com
            > > >
            > > > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
            > Service.
            > > >
            > > >
            > > >---------------------------------
            > > >
            > > >
            > > >
            > > >
            > > >
            > > >---------------------------------
            > > >Bring words and photos together (easily) with
            > > > PhotoMail - it's free and works with Yahoo! Mail.
            > > >
            > > >[Non-text portions of this message have been removed]
            > > >
            > >
            > > _________________________________________________________________
            > > Is your PC infected? Get a FREE online computer virus scan from
            > McAfee®
            > > Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?
            > cid=3963
            > >
            > >
            > >
            > >
            > > Yahoo! Groups Links
            > >
            > >
            > >
            > >
            > >
            > >
            > >
            > >
            > >
            > > ---------------------------------
            > > Do you Yahoo!?
            > > With a free 1 GB, there's more in store with Yahoo! Mail.
            > >
            > > [Non-text portions of this message have been removed]
            > >
            >
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