Loading ...
Sorry, an error occurred while loading the content.

Expand Messages
  • Nancy McStravick
    My daughter, Emily, had both sides operated on 3 weeks ago.(Surgeries were 4 days apart). She seems to be recovering well except at night. She is very
    Message 1 of 6 , Aug 7, 2003
    • 0 Attachment
      My daughter, Emily, had both sides operated on 3 weeks ago.(Surgeries
      were 4 days apart). She seems to be recovering well except at night.
      She is very unsettled and sounds quite distressed in her crying. I don't
      think she is in pain as she can be calmed down immediately with a Barney
      video - especially at 2am!! I am also afraid to let her cry too much in
      case she hyperventilates - I have never seen someone hyperventilate so I
      don't know much about that.
      My two main worries are that she twitches a lot at night. She did have
      this problem before surgery but I was hoping that it would disappear and
      I'm afraid it may be indication of a further stroke. (1) Does any-one
      have experience of twitching with Moyamoya?
      (2) Also, does anyone have any ideas why Emily is so distressed at
      night? Thanks.........a very tired Mum!



      [Non-text portions of this message have been removed]
    • dareinhart@yahoo.com
      Nancy, since the surgery is so recent, maybe when she lies down it hurts her head? Does she sit up to watch the video? Maybe that takes the pressure off. My
      Message 2 of 6 , Aug 7, 2003
      • 0 Attachment
        Nancy, since the surgery is so recent, maybe when she
        lies down it hurts her head? Does she sit up to watch
        the video? Maybe that takes the pressure off. My
        daughter did have awful headaches after surgery that
        we think were the result of her stitches and some
        lingering swelling. We had to call the neuro surgeon
        on call one night and he sent us to our pediatrician
        who figured it out. It did seem worse at night.
        Migraines are also a side effect of moyamoya, but
        speaking from experience, a video would not help them.


        My daughter also twitched a lot. I think it has eased
        up a bit, but it might be that after 4 years since
        surgery, I don't watch her sleep as much as I used to.
        My husband and I used to watch her constantly and her
        left hand, especially would twitch. I still wake up
        in the middle of the night and have to check on
        Maddie, just to be sure.

        Maddie would hyperventilate every time she cried and
        would always have a TIA, so if Emily is not having
        TIAs when she cries then she's probably not
        hyperventilating too badly.

        It will get easier, it just takes a while.

        Denyse


        --- Nancy McStravick <nancymcstravick@...>
        wrote:
        > My daughter, Emily, had both sides operated on 3
        > weeks ago.(Surgeries
        > were 4 days apart). She seems to be recovering well
        > except at night.
        > She is very unsettled and sounds quite distressed in
        > her crying. I don't
        > think she is in pain as she can be calmed down
        > immediately with a Barney
        > video - especially at 2am!! I am also afraid to let
        > her cry too much in
        > case she hyperventilates - I have never seen someone
        > hyperventilate so I
        > don't know much about that.
        > My two main worries are that she twitches a lot at
        > night. She did have
        > this problem before surgery but I was hoping that it
        > would disappear and
        > I'm afraid it may be indication of a further stroke.
        > (1) Does any-one
        > have experience of twitching with Moyamoya?
        > (2) Also, does anyone have any ideas why Emily is so
        > distressed at
        > night? Thanks.........a very tired Mum!
        >
        >
        >
        > [Non-text portions of this message have been
        > removed]
        >
        >

        __________________________________
        Do you Yahoo!?
        Yahoo! SiteBuilder - Free, easy-to-use web site design software
        http://sitebuilder.yahoo.com
      • Nancy McStravick
        Thanks Denyse. That s comforting to know that Maddie had twitching after surgery. That was my main worry. They are thinking of doing a sleep EEG to see if it s
        Message 3 of 6 , Aug 8, 2003
        • 0 Attachment
          Thanks Denyse. That's comforting to know that Maddie had twitching after
          surgery. That was my main worry. They are thinking of doing a sleep EEG
          to see if it's an issue. Emily does seem to be settling down a little at
          night now so fingers crossed.

          Thanks again for replying

          Nancy



          -----Original Message-----
          From: dareinhart@... [mailto:dareinhart@...]
          Sent: 08 August 2003 02:41
          To: parentingchildrenwithmoyamoya@yahoogroups.com
          Subject: Re: [Parenting Children with Moyamoya]



          Nancy, since the surgery is so recent, maybe when she
          lies down it hurts her head? Does she sit up to watch
          the video? Maybe that takes the pressure off. My
          daughter did have awful headaches after surgery that
          we think were the result of her stitches and some
          lingering swelling. We had to call the neuro surgeon
          on call one night and he sent us to our pediatrician
          who figured it out. It did seem worse at night.
          Migraines are also a side effect of moyamoya, but
          speaking from experience, a video would not help them.


          My daughter also twitched a lot. I think it has eased
          up a bit, but it might be that after 4 years since
          surgery, I don't watch her sleep as much as I used to.
          My husband and I used to watch her constantly and her
          left hand, especially would twitch. I still wake up
          in the middle of the night and have to check on
          Maddie, just to be sure.

          Maddie would hyperventilate every time she cried and
          would always have a TIA, so if Emily is not having
          TIAs when she cries then she's probably not
          hyperventilating too badly.

          It will get easier, it just takes a while.

          Denyse


          --- Nancy McStravick <nancymcstravick@...>
          wrote:
          > My daughter, Emily, had both sides operated on 3
          > weeks ago.(Surgeries
          > were 4 days apart). She seems to be recovering well
          > except at night.
          > She is very unsettled and sounds quite distressed in
          > her crying. I don't
          > think she is in pain as she can be calmed down
          > immediately with a Barney
          > video - especially at 2am!! I am also afraid to let
          > her cry too much in
          > case she hyperventilates - I have never seen someone
          > hyperventilate so I
          > don't know much about that.
          > My two main worries are that she twitches a lot at
          > night. She did have
          > this problem before surgery but I was hoping that it
          > would disappear and
          > I'm afraid it may be indication of a further stroke.
          > (1) Does any-one
          > have experience of twitching with Moyamoya?
          > (2) Also, does anyone have any ideas why Emily is so
          > distressed at
          > night? Thanks.........a very tired Mum!
          >
          >
          >
          > [Non-text portions of this message have been
          > removed]
          >
          >

          __________________________________
          Do you Yahoo!?
          Yahoo! SiteBuilder - Free, easy-to-use web site design software
          http://sitebuilder.yahoo.com





          Yahoo! Groups Sponsor



          ADVERTISEMENT

          <http://rd.yahoo.com/M=244522.3656190.4921519.1261774/D=egroupweb/S=1705
          042054:HM/A=1595055/R=0/SIG=124dqs3gk/*http:/ashnin.com/clk/muryutaitake
          nattogyo?YH=3656190&yhad=1595055> Click Here!



          <http://us.adserver.yahoo.com/l?M=244522.3656190.4921519.1261774/D=egrou
          pmail/S=:HM/A=1595055/rand=607575726>


          To unsubscribe from this group, send an email to:
          parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com



          Your use of Yahoo! Groups is subject to the Yahoo!
          <http://docs.yahoo.com/info/terms/> Terms of Service.



          [Non-text portions of this message have been removed]
        • RGrace5@aol.com
          Nancy, While in rehab with Kathleen she was quite restless at night.Expecially the first couple weeks. She had lost all use of her left side and some of the
          Message 4 of 6 , Aug 8, 2003
          • 0 Attachment
            Nancy, While in rehab with Kathleen she was quite restless at
            night.Expecially the first couple weeks. She had lost all use of her left side and some of
            the right. We were thinking she was having muscle cramps or spasms from not
            useing these muscles.She would wake up and just be shaking and "flinging" her
            right leg around and crying. I would do joint compressions and just rub her
            muscles. We also noticed that way before her diagnosis she would wake up whimpering
            and crying in the morning she would be not quite awake for quite doing this
            for quite a while before she actually woke up . We just thought it was her way
            of waking up and had a hard time with it. Now we see that after surgery she
            doesn't do this anymore.I'm thinking that maybe it had soemthing to do with her
            blood pressure as she's waking up. I know it can change a lot durrring sleep.
            In fact one of her strokes (before surgery) was while she was sleeping.She
            woke up one morning and couldn't use her right arm.It's been a year since her
            surgery and we still watch her so closely. It has gotten easier since her one
            year check showed great new collaterol growth. I truely believe that the surgery
            helped her much quicker than was expected.I always worried when she cried or
            even got laughing realy hard. I didn't know how much would cause
            hyperventilating.We are still very careful about keeping her hydrated too.It's alway a good
            idea if they want to test her sleeping just to be sure, but I hope this puts
            your mind at ease just a bit. I know how hard it is not knowing "what's going
            on" ., and what to worry about. there are so many unknown things about this
            disease I'm so glad to be able to talk to other parents and what their experience
            is.If you have any more questions ask away.
            Mary


            [Non-text portions of this message have been removed]
          • mandy harmon
            My daughter had some recently- 2 years post surgery. Dr Scott told me twitching alone can be nothing if it is in conjunction with other symptoms then it
            Message 5 of 6 , Aug 9, 2003
            • 0 Attachment
              My daughter had some recently- 2 years post surgery. Dr Scott told me
              twitching alone can be nothing if it is in conjunction with other symptoms
              then it should be checked. Mandy


              >From: "Nancy McStravick" <nancymcstravick@...>
              >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
              >To: <parentingchildrenwithmoyamoya@yahoogroups.com>
              >Subject: [Parenting Children with Moyamoya] Date: Thu, 7 Aug 2003 22:45:42
              >+0100
              >
              >My daughter, Emily, had both sides operated on 3 weeks ago.(Surgeries
              >were 4 days apart). She seems to be recovering well except at night.
              >She is very unsettled and sounds quite distressed in her crying. I don't
              >think she is in pain as she can be calmed down immediately with a Barney
              >video - especially at 2am!! I am also afraid to let her cry too much in
              >case she hyperventilates - I have never seen someone hyperventilate so I
              >don't know much about that.
              >My two main worries are that she twitches a lot at night. She did have
              >this problem before surgery but I was hoping that it would disappear and
              >I'm afraid it may be indication of a further stroke. (1) Does any-one
              >have experience of twitching with Moyamoya?
              >(2) Also, does anyone have any ideas why Emily is so distressed at
              >night? Thanks.........a very tired Mum!
              >
              >
              >
              >[Non-text portions of this message have been removed]
              >

              _________________________________________________________________
              The new MSN 8: smart spam protection and 2 months FREE*
              http://join.msn.com/?page=features/junkmail
            • mandy harmon
              My daughter also had bad nightmares that caused her to be afraid of going to sleep. We now talk through her dreams and pray about them. It has seemed to
              Message 6 of 6 , Aug 9, 2003
              • 0 Attachment
                My daughter also had bad nightmares that caused her to be afraid of going to
                sleep. We now talk through her dreams and pray about them. It has seemed
                to help. Mandy


                >From: "Nancy McStravick" <nancymcstravick@...>
                >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
                >To: <parentingchildrenwithmoyamoya@yahoogroups.com>
                >Subject: [Parenting Children with Moyamoya] Date: Thu, 7 Aug 2003 22:28:37
                >+0100
                >
                >Me again.....
                >
                >My daughter, Emily, had both sides operated on 3 weeks ago.(Surgeries
                >were 4 days apart). She seems to be recovering well except at night.
                >She is very unsettled and sounds quite distressed in her crying. I don't
                >think she is in pain as she can be calmed down immediately with a Barney
                >video - especially at 2am!! I am also afraid to let her cry too much in
                >case she hyperventilates - I have never seen someone hyperventilate so I
                >don't know much about that.
                >My two main worries are that she twitches a lot at night. She did have
                >this problem before surgery but I was hoping that it would disappear and
                >I'm afraid it may be indication of a further stroke. (1) Does any-one
                >have experience of twitching with Moyamoya?
                >(2) Also, does anyone have any ideas why Emily is so distressed at
                >night? Thanks.........a very tired Mum!
                >
                >
                >
                >[Non-text portions of this message have been removed]
                >

                _________________________________________________________________
                Tired of spam? Get advanced junk mail protection with MSN 8.
                http://join.msn.com/?page=features/junkmail
              Your message has been successfully submitted and would be delivered to recipients shortly.