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Re: [Parenting Children with Moyamoya] Re: I am cleaning up the spam

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  • Laurie Park
    Hi Jane, Samantha was lucky and did not suffer a stroke prior to her being diagnosed with Moyamoya. She seems to have no residual affects except for the
    Message 1 of 16 , Jan 17, 2008
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      Hi Jane,
      Samantha was lucky and did not suffer a stroke prior to her being diagnosed with Moyamoya. She seems to have no residual affects except for the migraines. She's in fourth grade and is in the gifted program at school.

      I am a Speech-Language Pathologist who has worked with pediatrics as well as adult stroke patients. I credit my profession with helping me to recognize the early signs of stroke so that she could be diagnosed early. The ER doctor I took her to after she suffered her 3rd TIA in 10 days, including slurred speech during the last episode, was going to send her home without any tests at all. I became a quiet rock in that ER and would not move until he got someone to help us. Luckily the pediatrician on call was wonderful and took Samantha's case very seriously. We were stationed in Korea at the time where Moyamoya is more common than in the States.

      Is Chloe seeing a Speech Language Pathologist to help her with her communication? Perhaps when her hand improves it will be easier for her to use communication devices and she won't be so frustrated. I haven't had experience with hand surgery but I have a couple of friends who are Occupational Therapists and specialize in hand therapy. If you have any questions that you can't get answered, let me know and I will see if my friends can help point you in the right direction.

      I'll be thinking of you and Chloe next wednesday and praying for excellent outcomes!!

      Keep us posted.
      Laurie :)

      jane wood <ginger090177@...> wrote:
      Hello Laurie
      I havnt spoken to anyone in ages. I guess i just got fed up of all the spam and didnt trust the emails anymore, i hope it gets sorted as families need this its a great way to stay in touch get advice ect
      Samantha will be 9 now then same as Chloe. Hows she doing at school ???
      Glad her headaches are easing. Chloe has never complained of headaches, but crys a lot which i put down to frustration as she cant talk, she also hits her head a lot again i put this down to frustration, the Drs never explained to me that she might get headaches, in fact they didnt explain much at all. Chloe is having an operation on her weak hand next Wednesday it was booked for before Christmas but had to be canceled because she had a bad cough on the morning of the operation. They are hoping the operation will allow her to use her hand more.
      Has anyone else come across this surgery ???
      Take care all
      Jane x

      Laurie Park <sparkln13@...> wrote: Thank you, Jane, for taking action!

      My daughter, Samantha, had bilateral revascularization performed by Dr. Scott (yes, we too worship him and his staff!) in July, 2005. She was 7 yrs old at the time. Her recovery has been wonderful. Her migraine-like headaches are decreasing to an average of once every 1-2 months. The only scare we had was last summer when she had a fleeting TIA at home. Her aspirin was increased to 2x/day and she seems to be fine since.

      I was wondering if anyone has been participating in the research project that was discussed on DJ's site several months ago? I think it was through a university/hospital in Arizona (?).
      I had considered it at the time but then got distracted with more immediate events and never pursued it.

      Here's to a happy and HEALTHY New Year for everyone!!
      Laurie

      Jane <ginger090177@...> wrote:
      --- In parentingchildrenwithmoyamoya@yahoogroups.com, leilei543
      <no_reply@...> wrote:
      >
      > Hello Everyone... Im sorry to see this group being attacked by spam.
      > When my son was diagnosed with moyamoya in 2001 I desperately wanted to
      > speak to others who were experiencing the same thing and started this
      > group. It was a great resource to me at that time and I met many very
      > helpful positive parents through this group. I was terribly
      > disappointed to come back several years later and see it bombarded with
      > spam. So if any of the members who found this group useful are still
      > around I would love for you to return. I would like to hear how your
      > children are doing. I am working on cleaning up the spam and have
      > locked down the membership to those who are approved so that should
      > prevent future spam from being posted.
      >
      > Once again I would like to apologize to all of you and I hope that you
      > return.
      >

      Hi everyone i do hope the spam goes as i dont like to use this site
      anymore because of it. It really helped when Chloe was first
      diagnosed, its sad that people are using this site for filth.
      Jane

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    • jane wood
      Hi Laurie Nice to hear from you Dear. Chloe isnt having speech therapy at the moment but i will be pushing for it once we get her hand sorted. We go in
      Message 2 of 16 , Jan 21, 2008
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        Hi Laurie
        Nice to hear from you Dear.
        Chloe isnt having speech therapy at the moment but i will be pushing for it once we get her hand sorted. We go in tomorrow surgery is planned for Wednesday. I am feeling very stressed as you can imagine.
        Chloe has a Dynavox speaking machine, but the last time we went to see our specialist he mentioned he thought her sounds had got better, she uses the machine very well and also does makaton (sign language) so she manages quiet well.
        Well there doesnt seem to be any spam on here i am really pleased its good to get talking with everyone again.
        Jane x

        Laurie Park <sparkln13@...> wrote: Hi Jane,
        Samantha was lucky and did not suffer a stroke prior to her being diagnosed with Moyamoya. She seems to have no residual affects except for the migraines. She's in fourth grade and is in the gifted program at school.

        I am a Speech-Language Pathologist who has worked with pediatrics as well as adult stroke patients. I credit my profession with helping me to recognize the early signs of stroke so that she could be diagnosed early. The ER doctor I took her to after she suffered her 3rd TIA in 10 days, including slurred speech during the last episode, was going to send her home without any tests at all. I became a quiet rock in that ER and would not move until he got someone to help us. Luckily the pediatrician on call was wonderful and took Samantha's case very seriously. We were stationed in Korea at the time where Moyamoya is more common than in the States.

        Is Chloe seeing a Speech Language Pathologist to help her with her communication? Perhaps when her hand improves it will be easier for her to use communication devices and she won't be so frustrated. I haven't had experience with hand surgery but I have a couple of friends who are Occupational Therapists and specialize in hand therapy. If you have any questions that you can't get answered, let me know and I will see if my friends can help point you in the right direction.

        I'll be thinking of you and Chloe next wednesday and praying for excellent outcomes!!

        Keep us posted.
        Laurie :)

        jane wood <ginger090177@...> wrote:
        Hello Laurie
        I havnt spoken to anyone in ages. I guess i just got fed up of all the spam and didnt trust the emails anymore, i hope it gets sorted as families need this its a great way to stay in touch get advice ect
        Samantha will be 9 now then same as Chloe. Hows she doing at school ???
        Glad her headaches are easing. Chloe has never complained of headaches, but crys a lot which i put down to frustration as she cant talk, she also hits her head a lot again i put this down to frustration, the Drs never explained to me that she might get headaches, in fact they didnt explain much at all. Chloe is having an operation on her weak hand next Wednesday it was booked for before Christmas but had to be canceled because she had a bad cough on the morning of the operation. They are hoping the operation will allow her to use her hand more.
        Has anyone else come across this surgery ???
        Take care all
        Jane x

        Laurie Park <sparkln13@...> wrote: Thank you, Jane, for taking action!

        My daughter, Samantha, had bilateral revascularization performed by Dr. Scott (yes, we too worship him and his staff!) in July, 2005. She was 7 yrs old at the time. Her recovery has been wonderful. Her migraine-like headaches are decreasing to an average of once every 1-2 months. The only scare we had was last summer when she had a fleeting TIA at home. Her aspirin was increased to 2x/day and she seems to be fine since.

        I was wondering if anyone has been participating in the research project that was discussed on DJ's site several months ago? I think it was through a university/hospital in Arizona (?).
        I had considered it at the time but then got distracted with more immediate events and never pursued it.

        Here's to a happy and HEALTHY New Year for everyone!!
        Laurie

        Jane <ginger090177@...> wrote:
        --- In parentingchildrenwithmoyamoya@yahoogroups.com, leilei543
        <no_reply@...> wrote:
        >
        > Hello Everyone... Im sorry to see this group being attacked by spam.
        > When my son was diagnosed with moyamoya in 2001 I desperately wanted to
        > speak to others who were experiencing the same thing and started this
        > group. It was a great resource to me at that time and I met many very
        > helpful positive parents through this group. I was terribly
        > disappointed to come back several years later and see it bombarded with
        > spam. So if any of the members who found this group useful are still
        > around I would love for you to return. I would like to hear how your
        > children are doing. I am working on cleaning up the spam and have
        > locked down the membership to those who are approved so that should
        > prevent future spam from being posted.
        >
        > Once again I would like to apologize to all of you and I hope that you
        > return.
        >

        Hi everyone i do hope the spam goes as i dont like to use this site
        anymore because of it. It really helped when Chloe was first
        diagnosed, its sad that people are using this site for filth.
        Jane

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        [Non-text portions of this message have been removed]

        ---------------------------------
        Sent from Yahoo! - a smarter inbox.

        [Non-text portions of this message have been removed]

        ---------------------------------
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        [Non-text portions of this message have been removed]






        ---------------------------------
        Sent from Yahoo! - a smarter inbox.

        [Non-text portions of this message have been removed]
      • jane wood
        Hi all Just wanted to let you know Chloe had her operation done on her wrist/thumb on Wednesday and it went ok. We are home now. We wont know if it is going
        Message 3 of 16 , Jan 25, 2008
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          Hi all
          Just wanted to let you know Chloe had her operation done on her wrist/thumb on Wednesday and it went ok. We are home now. We wont know if it is going to work for a while though. We have lots of physio to do, its been hard today as Chloe is in a bit of pain with it, i hope it doesnt last too long.
          Hope your all okay
          Jane and family xxx


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        • Mohamed
          Hello everyone, I wrote in in 2006/07 because my daughter had just been diagonised with moyamoya and this site was wonderful in supporting and giving my family
          Message 4 of 16 , Sep 30, 2008
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            Hello everyone,
            I wrote in in 2006/07 because my daughter had just been diagonised with moyamoya and this site was wonderful in supporting and giving my family resources on the disease.As you said it was just horrid to see people take advantage of the website.
            Since I last wrote in, I am pleased to say that my daughter Alia has undergone surgery twice with Dr Scott(Children's hospital Boston) and she is in recovery for the right frontal lobe as we speak.She is doing well and I can't praise the doctors and nursing staff enough; they are so good at what they do, you just feel taken care of.
            ----- Original Message ----
            From: Kevin Cave <kevin_c86@...>
            To: parentingchildrenwithmoyamoya@yahoogroups.com
            Sent: Thursday, January 10, 2008 7:40:39 PM
            Subject: RE: [Parenting Children with Moyamoya] I am cleaning up the spam

            To us also, please let us know if we can help.

            Nancy McStravick <nancymcstravick@ hotmail.com> wrote:
            That's fantastic news.
            It's so upsetting to see all these horrible messages coming through.
            Thank you

            To: parentingchildrenwi thmoyamoya@ yahoogroups. comFrom: no_reply@yahoogroup s.comDate: Thu, 10 Jan 2008 19:46:47 +0000Subject: [Parenting Children with Moyamoya] I am cleaning up the spam

            Hello Everyone... Im sorry to see this group being attacked by spam. When my son was diagnosed with moyamoya in 2001 I desperately wanted to speak to others who were experiencing the same thing and started this group. It was a great resource to me at that time and I met many very helpful positive parents through this group. I was terribly disappointed to come back several years later and see it bombarded with spam. So if any of the members who found this group useful are still around I would love for you to return. I would like to hear how your children are doing. I am working on cleaning up the spam and have locked down the membership to those who are approved so that should prevent future spam from being posted.Once again I would like to apologize to all of you and I hope that you return.

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            Best Regards,

            Kevin M. Cave

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