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Re: [Parenting Children with Moyamoya]

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  • 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 1 of 6 , Aug 7, 2003
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      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]
      >
      >

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    • 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 2 of 6 , Aug 8, 2003
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        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]
        >
        >

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        [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 3 of 6 , Aug 8, 2003
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          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 4 of 6 , Aug 9, 2003
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            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]
            >

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          • 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 5 of 6 , Aug 9, 2003
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              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]
              >

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