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Re: [Parenting Children with Moyamoya] Does any of this sound familiar to you?

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  • ilovemybulldog@aol.com
    Hi Jill I am sorry, I have totally forgotten about your email, even though I told my husband about it..I thought that I had written to you back. Everything
    Message 1 of 4 , Feb 21, 2006
    • 0 Attachment
      Hi Jill
      I am sorry, I have totally forgotten about your email, even though I
      told my husband about it..I thought that I had written to you back.
      Everything is so overwhelming. Needless to say that is an understatement huh? That is
      wonderful that you have lent your support. I will have to travel alone as it
      is impossible right now with my husband (he is in the army and trains the
      soldiers headed to Iraq and Afghanistan and is uncertain if he will be able to
      go unless they can find someone to replace him for those two weeks-he is an
      officer) We are really hoping they can, but the army also might only allow one
      of us to travel with Keith).
      If you would like.. I can send Keith's email address to you to give to
      Tara. She might be able to help him more then I can since she has been down
      this road already. I know he is scared although he won't admit it.
      Today is a busy day for me... getting the rest of the things sent to Dr
      Steinberg and picking up the referrals ( have 3 doctor's writing one for
      Keith to see Dr Steinberg). 2 Army doctors from Banes Jones Army Hospital and
      one from the civilian sector and doing the insurance stuff today and getting
      everyone on board on the same sheet of music. Also going to patience resources
      here on at the hospital for travel. By tomorrow, Dr Steinberg will have
      everything and we will have a surgery date. There is a Dr Rose in Houston that can
      also do the surgery, however, I don't know his credentials and never met the
      man or hear anyone talk about him... needless to say.. if I am going to put
      my son's brain in someone's hands.. I want it to be Dr Steinberg.

      Thank you for the support. I am sorry that we had to meet under these kind
      of circumstances.... but so glad that you offered support and understanding...
      I will let you know the date when we are arriving.
      (((hugs))
      Sara

      In a message dated 2/20/2006 9:39:28 P.M. Central Standard Time,
      sca4gold@... writes:

      Sara,

      Gosh, what you said about your son sounded hauntingly familiar. When my
      daughter was diagnosed (at 17) she didn't want to know ANYTHING about what was
      to come. She wanted us to just tell her when and where to go, but really
      didn't want any of the details, or any part of decision-making. In hindsight, I
      think it was her defense mechanism kicking in. Now, 20 months post-surgery,
      she has educated herself quite well, and tries to support and offer
      encouragement to others who are going through what she did.

      I sent you an email a week or so ago . . . don't know if you received it.
      We would love to be of whatever support we can when you come to Stanford.
      Maybe it will help your son (all of you) to see Tara and how good she looks.
      She has proven to be quite inspirational to people. Typically fears are calmed
      a bit by actually meeting someone who has "been there, done that". Anyway,
      we would love to offer a shoulder to lean on, and to help all of you get
      through this, so we hope to hear from you.

      Take care,
      Jill

      > ----- Original Message -----
      > From: ilovemybulldog@...
      > To: parentingchildrenwithmoyamoya@yahoogroups.com
      > Subject: Re: [Parenting Children with Moyamoya] Does any of this sound
      familiar to you?
      > Date: Mon, 20 Feb 2006 18:48:18 EST
      >
      >
      >
      > Patti
      > My son is 21, and getting ready for his surgery and he has some weird
      > kind of denial, like nothing is wrong and refuses to even discuss
      > his upcoming
      > surgery. Dr Steinberg read his angiogram and tomorrow the rest of his
      file
      > from the hospital he was in, and the mri to determine exactly what kind of
      > revasularization surgery he will require when we get there. Already
      > know he has
      > to have 2 surgeries a week apart since there are 3 complete blockage and
      one
      > stenosis. The only concerns my son has is food and how long he will be
      there..
      > which is kinda strange in my book and doesn't want to be a part of any
      > decisions regarding his health care.. he alienated himself from
      > it... some of it
      > the stroke he had.. some of it a kind of depression. It might be just the
      > whole thing is just too overwhelming for your son like it is for mine...
      >
      > Hope this helps.
      >
      > Sara
      >
      >
      > In a message dated 2/20/2006 2:21:18 P.M. Central Standard Time,
      > pattil647@... writes:
      >
      > I'm wondering if anyone on this board has experienced any of the
      > symptoms that my son is experiencing. My son, Michael, has moyamoya.
      > He is 11-years old. He is experiencing what may be depression related
      > to his disease. He also has some cognitive issues related to his
      > disease - he has visiospatial issues and small motor skills deficits.
      > He had the pial synangiosis surgery performed by Dr Scott 2- years ago
      > but it didn't work well. Can anyone relate to these things? Thanks.
      >
      >
      >
      >
      >
      >
      > Yahoo! Groups Links
      >
      >
      >
      >
      >
      >
      >
      >
      >
      >
      >
      >
      > [Non-text portions of this message have been removed]

      >




      Yahoo! Groups Links













      [Non-text portions of this message have been removed]
    • pattil647
      Sara, thank you very much for responding. It s really nice to know that you re not alone. I am so sorry to hear about your son. I ll pray for him. I m sure
      Message 2 of 4 , Feb 21, 2006
      • 0 Attachment
        Sara, thank you very much for responding. It's really nice to know
        that you're not alone. I am so sorry to hear about your son. I'll
        pray for him. I'm sure he'll be fine. It takes a long time to get
        over this type of illness. My son had his surgery 2-years ago, and
        the emotional scars are still present. Good luck to you.

        --- In parentingchildrenwithmoyamoya@yahoogroups.com,
        ilovemybulldog@... wrote:
        >
        >
        > Hi Jill
        > I am sorry, I have totally forgotten about your email, even
        though I
        > told my husband about it..I thought that I had written to you
        back.
        > Everything is so overwhelming. Needless to say that is an
        understatement huh? That is
        > wonderful that you have lent your support. I will have to travel
        alone as it
        > is impossible right now with my husband (he is in the army and
        trains the
        > soldiers headed to Iraq and Afghanistan and is uncertain if he
        will be able to
        > go unless they can find someone to replace him for those two weeks-
        he is an
        > officer) We are really hoping they can, but the army also might
        only allow one
        > of us to travel with Keith).
        > If you would like.. I can send Keith's email address to you
        to give to
        > Tara. She might be able to help him more then I can since she has
        been down
        > this road already. I know he is scared although he won't admit it.
        > Today is a busy day for me... getting the rest of the things
        sent to Dr
        > Steinberg and picking up the referrals ( have 3 doctor's writing
        one for
        > Keith to see Dr Steinberg). 2 Army doctors from Banes Jones Army
        Hospital and
        > one from the civilian sector and doing the insurance stuff today
        and getting
        > everyone on board on the same sheet of music. Also going to
        patience resources
        > here on at the hospital for travel. By tomorrow, Dr Steinberg will
        have
        > everything and we will have a surgery date. There is a Dr Rose in
        Houston that can
        > also do the surgery, however, I don't know his credentials and
        never met the
        > man or hear anyone talk about him... needless to say.. if I am
        going to put
        > my son's brain in someone's hands.. I want it to be Dr Steinberg.
        >
        > Thank you for the support. I am sorry that we had to meet under
        these kind
        > of circumstances.... but so glad that you offered support and
        understanding...
        > I will let you know the date when we are arriving.
        > (((hugs))
        > Sara
        >
        > In a message dated 2/20/2006 9:39:28 P.M. Central Standard Time,
        > sca4gold@... writes:
        >
        > Sara,
        >
        > Gosh, what you said about your son sounded hauntingly familiar.
        When my
        > daughter was diagnosed (at 17) she didn't want to know ANYTHING
        about what was
        > to come. She wanted us to just tell her when and where to go, but
        really
        > didn't want any of the details, or any part of decision-making.
        In hindsight, I
        > think it was her defense mechanism kicking in. Now, 20 months
        post-surgery,
        > she has educated herself quite well, and tries to support and
        offer
        > encouragement to others who are going through what she did.
        >
        > I sent you an email a week or so ago . . . don't know if you
        received it.
        > We would love to be of whatever support we can when you come to
        Stanford.
        > Maybe it will help your son (all of you) to see Tara and how good
        she looks.
        > She has proven to be quite inspirational to people. Typically
        fears are calmed
        > a bit by actually meeting someone who has "been there, done
        that". Anyway,
        > we would love to offer a shoulder to lean on, and to help all of
        you get
        > through this, so we hope to hear from you.
        >
        > Take care,
        > Jill
        >
        > > ----- Original Message -----
        > > From: ilovemybulldog@...
        > > To: parentingchildrenwithmoyamoya@yahoogroups.com
        > > Subject: Re: [Parenting Children with Moyamoya] Does any of this
        sound
        > familiar to you?
        > > Date: Mon, 20 Feb 2006 18:48:18 EST
        > >
        > >
        > >
        > > Patti
        > > My son is 21, and getting ready for his surgery and he has
        some weird
        > > kind of denial, like nothing is wrong and refuses to even
        discuss
        > > his upcoming
        > > surgery. Dr Steinberg read his angiogram and tomorrow the rest
        of his
        > file
        > > from the hospital he was in, and the mri to determine exactly
        what kind of
        > > revasularization surgery he will require when we get there.
        Already
        > > know he has
        > > to have 2 surgeries a week apart since there are 3 complete
        blockage and
        > one
        > > stenosis. The only concerns my son has is food and how long he
        will be
        > there..
        > > which is kinda strange in my book and doesn't want to be a part
        of any
        > > decisions regarding his health care.. he alienated himself from
        > > it... some of it
        > > the stroke he had.. some of it a kind of depression. It might
        be just the
        > > whole thing is just too overwhelming for your son like it is for
        mine...
        > >
        > > Hope this helps.
        > >
        > > Sara
        > >
        > >
        > > In a message dated 2/20/2006 2:21:18 P.M. Central Standard Time,
        > > pattil647@... writes:
        > >
        > > I'm wondering if anyone on this board has experienced any of the
        > > symptoms that my son is experiencing. My son, Michael, has
        moyamoya.
        > > He is 11-years old. He is experiencing what may be depression
        related
        > > to his disease. He also has some cognitive issues related to
        his
        > > disease - he has visiospatial issues and small motor skills
        deficits.
        > > He had the pial synangiosis surgery performed by Dr Scott 2-
        years ago
        > > but it didn't work well. Can anyone relate to these things?
        Thanks.
        > >
        > >
        > >
        > >
        > >
        > >
        > > Yahoo! Groups Links
        > >
        > >
        > >
        > >
        > >
        > >
        > >
        > >
        > >
        > >
        > >
        > >
        > > [Non-text portions of this message have been removed]
        >
        > >
        >
        >
        >
        >
        > Yahoo! Groups Links
        >
        >
        >
        >
        >
        >
        >
        >
        >
        >
        >
        >
        >
        > [Non-text portions of this message have been removed]
        >
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