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  • Cassie Dawes
    G day My name is Cassie and I have an 18 month old son, Gus. He was diagnosed with AHC 4 months ago. Previous to that he had been misdiagnosed with epilepsy.
    Message 1 of 9 , Oct 12, 2000
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      G'day

      My name is Cassie and I have an 18 month old son, Gus. He was
      diagnosed with AHC 4 months ago. Previous to that he had been
      misdiagnosed with epilepsy. He is currently taking Sibelium and
      lamictal and when he has an episode we give him chloral hydrate. I
      would love to hear from anyone as I have so many unanswered questions .
      If there is anyone out there from Australia that would be fantastic because AHC
      is basically unheard of over here and I feel very isolated.

      It has been great to read your messages, but also scary, it has
      opened my eyes to so many things that I was not aware of.

      What's in store for the future????? Has anyone got any case histories that they would be willing to share with me???

      Thanks


      Cassie


      [Non-text portions of this message have been removed]
    • norman_stretton
      My name is Susie Stretton. My daughter Kim is 37 years old. We are in the process of finding out if she has AHC. It is very hard to wait on results and doctors
      Message 2 of 9 , May 18 2:19 PM
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        My name is Susie Stretton. My daughter Kim is 37 years old. We are in the process of finding out if she has AHC. It is very hard to wait on results and doctors appointments when you know something is wrong and don't know what or how to help. I have learned a lot just reading your posts. I have a thousand questions but will start with this one. Do your children experience fatigue out of proportion to the amount of awake time or exercise they have done? Some days she just wants to sleep or sit still.

      • Lynn Egan
        Welcome to the group Susie!  My daughter Kathleen (age 24) is very wide awake unless she is ill or having a severe episode. Up until a few years ago, she
        Message 3 of 9 , May 18 2:55 PM
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          Welcome to the group Susie!  My daughter Kathleen (age 24) is very wide awake unless she is ill or having a severe episode. Up until a few years ago, she would sleep 10-13 hours per night but never napped.  Now she sleeps approximately 9 hours per night.  She doesn't exert herself very often but when she does, I have not noticed additional tiredness.  

          Ask any question...we are here to support and help in anyway we can.

          Best, Lynn
           
          Lynn Egan
          President and Family Support
          239 Nevada St.
          Redwood City, CA 94062
          cell: 650-796-1910
          email: lynn@...

          Alternating Hemiplegia of Childhood Foundation


          From: "nightsong@... [afha]" <afha@yahoogroups.com>
          To: afha@yahoogroups.com
          Sent: Monday, May 18, 2015 2:19 PM
          Subject: [ahc] New to the group

           
          My name is Susie Stretton. My daughter Kim is 37 years old. We are in the process of finding out if she has AHC. It is very hard to wait on results and doctors appointments when you know something is wrong and don't know what or how to help. I have learned a lot just reading your posts. I have a thousand questions but will start with this one. Do your children experience fatigue out of proportion to the amount of awake time or exercise they have done? Some days she just wants to sleep or sit still.


        • Karen Venti
          hi Susie, My daughter has always experienced fatigue throughout the day. She is almost 16 and must nap every day for 1-3 hrs mid day. Addie is also on
          Message 4 of 9 , May 18 3:48 PM
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            hi Susie,

            My daughter has always experienced fatigue throughout the day.  She is almost 16 and must nap every day for 1-3 hrs mid day.  Addie is also on several meds so some level of fatigue is due to that but without napping she may make it thru day one but the following day or next she will have neurological issues....like seizure, focal dystonias, plegia and definately less flexible behavior 

            Has Kim always had fatigue or is this new?

            Karen 

            Sent from my iPad

            On May 18, 2015, at 5:19 PM, "nightsong@... [afha]" <afha@yahoogroups.com> wrote:

             

            My name is Susie Stretton. My daughter Kim is 37 years old. We are in the process of finding out if she has AHC. It is very hard to wait on results and doctors appointments when you know something is wrong and don't know what or how to help. I have learned a lot just reading your posts. I have a thousand questions but will start with this one. Do your children experience fatigue out of proportion to the amount of awake time or exercise they have done? Some days she just wants to sleep or sit still.

          • Mollie W Erpenbeck
            Hi Susie, My son, Austin (5), always tires out after very little running/walking. He has to take more frequent breaks or he will go into an episode. I m sorry
            Message 5 of 9 , May 18 4:18 PM
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              Hi Susie,

              My son, Austin (5), always tires out after very little running/walking. He has to take more frequent breaks or he will go into an episode. 

              I'm sorry to hear it has taken this long for a diagnosis. Keep in touch. 

              Mollie


              Sent from my iPhone

              On May 18, 2015, at 5:19 PM, "nightsong@... [afha]" <afha@yahoogroups.com> wrote:

               

              My name is Susie Stretton. My daughter Kim is 37 years old. We are in the process of finding out if she has AHC. It is very hard to wait on results and doctors appointments when you know something is wrong and don't know what or how to help. I have learned a lot just reading your posts. I have a thousand questions but will start with this one. Do your children experience fatigue out of proportion to the amount of awake time or exercise they have done? Some days she just wants to sleep or sit still.

            • Dale Campos
              *Dear Susie,* *How are you? My name is Dale Campos, I am also 37 and I also have AHC. When I was younger I did get fatigue if I over taxed my body. Nowadays, I
              Message 6 of 9 , May 18 7:36 PM
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                *Dear Susie,*
                *How are you? My name is Dale Campos, I am also 37 and I also have AHC.
                When I was younger I did get fatigue if I over taxed my body. Nowadays, I
                listen to my body. The best medicine I take is rest. I rest before I get
                really fatigued. I haven't had a really bad limb spill since I was younger.
                God has really healed me. When I was younger an AHC doctor told my parents
                and I that I will never walk again and I will be in a wheelchair the rest
                of my life. Well, God had different plans for me. I wrote a book called
                (Digger's Adventures: Friends) It is about my dog Digger I gave him a voice
                and friends. It is has a lot important morals in the book. You can find my
                book at this link www.createspace.com/4310186
                <http://www.createspace.com/4310186>. My other business is The Danny Campos
                Scholarship Fund. I will send you more information on the scholarship fund
                in a attachment. You can always email at chevylogo34@...
                <chevylogo34@...>. Here is a message that I try to live by. Don't
                ever ever give up, Jimmy Valvano made a very famous speech. I will also
                send you that video. If you have any questions for me, I would be willing
                to help in any way.*
                *Your "new" friend,*
                *Dale*
                * https://www.youtube.com/watch?v=HuoVM9nm42E
                <https://www.youtube.com/watch?v=HuoVM9nm42E> *

                On Mon, May 18, 2015 at 2:19 PM, nightsong@... [afha] <
                afha@yahoogroups.com> wrote:

                >
                >
                > My name is Susie Stretton. My daughter Kim is 37 years old. We are in the
                > process of finding out if she has AHC. It is very hard to wait on results
                > and doctors appointments when you know something is wrong and don't know
                > what or how to help. I have learned a lot just reading your posts. I have a
                > thousand questions but will start with this one. Do your children
                > experience fatigue out of proportion to the amount of awake time or
                > exercise they have done? Some days she just wants to sleep or sit still.
                >
                >
                >


                [Non-text portions of this message have been removed]
              • nightsong@camtel.net
                Ok I am going to try this again. THanks for the welcome. I have so many questions I don t know where to start. We are hoping to get a definite diagnoses this
                Message 7 of 9 , May 18 7:41 PM
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                  Ok I am going to try this again. THanks for the welcome. I have so many questions I don't know where to start. We are hoping to get a definite diagnoses this time. We have been working on controlling seizures and that is ok  its self but it does not answer all her symptoms and leaves us with no plan of care and no support system. I am so happy to have you to go to . Thank you for being there. I will try to write a little more about Kim tomorrow.

                  [Non-text portions of this message have been removed]
                • Dale Campos
                  *How are you? My name is Dale Campos, I am also 37 and I have AHC. When I was younger I did get fatigue if I over taxed my body. Nowadays, I listen to my body.
                  Message 8 of 9 , May 18 9:59 PM
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                    How are you? My name is Dale Campos, I am also 37 and I have AHC. When I was younger I did get fatigue if I over taxed my body. Nowadays, I listen to my body. The best medicine I take is rest. I rest before I get really fatigued. I haven't had a really bad limb spill since I was younger. God has really healed me. When I was younger an AHC doctor told my parents and I that I will never walk again and I will be in a wheelchair the rest of my life. Well, God had different plans for me. I wrote a book called (Digger's Adventures: Friends) It is about my dog Digger I gave him a voice and friends. It is has a lot important morals in the book. You can find my book at this link www.createspace.com/4310186. My other business is The Danny Campos Scholarship Fund. I will send you more information on the scholarship fund in a attachment. You can always email at chevylogo34@.... Here is a message that I try to live by. Don't ever ever give up, Jimmy Valvano made a very famous speech. I will also send you that video. If you have any questions for me, I would be willing to help in any way.
                    Your "new" friend,
                    Dale

                    On Mon, May 18, 2015 at 7:41 PM, 'nightsong@...' nightsong@... [afha] <afha@yahoogroups.com> wrote:
                     

                    Ok I am going to try this again. THanks for the welcome. I have so many questions I don't know where to start. We are hoping to get a definite diagnoses this time. We have been working on controlling seizures and that is ok  its self but it does not answer all her symptoms and leaves us with no plan of care and no support system. I am so happy to have you to go to . Thank you for being there. I will try to write a little more about Kim tomorrow.

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


                  • Dale Campos
                    *Dear Susie,* *How are you? My name is Dale Campos, I am also 37 and I also have AHC. When I was younger I did get fatigue if I over taxed my body. Nowadays, I
                    Message 9 of 9 , May 18 10:00 PM
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                      *Dear Susie,*
                      *How are you? My name is Dale Campos, I am also 37 and I also have AHC.
                      When I was younger I did get fatigue if I over taxed my body. Nowadays, I
                      listen to my body. The best medicine I take is rest. I rest before I get
                      really fatigued. I haven't had a really bad limb spill since I was younger.
                      God has really healed me. When I was younger an AHC doctor told my parents
                      and I that I will never walk again and I will be in a wheelchair the rest
                      of my life. Well, God had different plans for me. I wrote a book called
                      (Digger's Adventures: Friends) It is about my dog Digger I gave him a voice
                      and friends. It is has a lot important morals in the book. You can find my
                      book at this link www.createspace.com/4310186
                      <http://www.createspace.com/4310186>. My other business is The Danny Campos
                      Scholarship Fund. I will send you more information on the scholarship fund
                      in a attachment. You can always email at chevylogo34@...
                      <chevylogo34@...>. Here is a message that I try to live by. Don't
                      ever ever give up, Jimmy Valvano made a very famous speech. I will also
                      send you that video. If you have any questions for me, I would be willing
                      to help in any way.*
                      *Your "new" friend,*
                      *Dale*
                      * https://www.youtube.com/watch?v=HuoVM9nm42E
                      <https://www.youtube.com/watch?v=HuoVM9nm42E>*

                      On Mon, May 18, 2015 at 9:59 PM, Dale Campos <chevylogo34@...> wrote:

                      > *How are you? My name is Dale Campos, I am also 37 and I have AHC. When I
                      > was younger I did get fatigue if I over taxed my body. Nowadays, I listen
                      > to my body. The best medicine I take is rest. I rest before I get really
                      > fatigued. I haven't had a really bad limb spill since I was younger. God
                      > has really healed me. When I was younger an AHC doctor told my parents and
                      > I that I will never walk again and I will be in a wheelchair the rest of my
                      > life. Well, God had different plans for me. I wrote a book called (Digger's
                      > Adventures: Friends) It is about my dog Digger I gave him a voice and
                      > friends. It is has a lot important morals in the book. You can find my book
                      > at this link www.createspace.com/4310186
                      > <http://www.createspace.com/4310186>. My other business is The Danny Campos
                      > Scholarship Fund. I will send you more information on the scholarship fund
                      > in a attachment. You can always email at chevylogo34@...
                      > <chevylogo34@...>. Here is a message that I try to live by. Don't
                      > ever ever give up, Jimmy Valvano made a very famous speech. I will also
                      > send you that video. If you have any questions for me, I would be willing
                      > to help in any way.*
                      > *Your "new" friend,*
                      > *Dale*
                      > * https://www.youtube.com/watch?v=HuoVM9nm42E
                      > <https://www.youtube.com/watch?v=HuoVM9nm42E>*
                      >
                      > On Mon, May 18, 2015 at 7:41 PM, 'nightsong@...'
                      > nightsong@... [afha] <afha@yahoogroups.com> wrote:
                      >
                      >>
                      >>
                      >> Ok I am going to try this again. THanks for the welcome. I have so many
                      >> questions I don't know where to start. We are hoping to get a definite
                      >> diagnoses this time. We have been working on controlling seizures and that
                      >> is ok its self but it does not answer all her symptoms and leaves us with
                      >> no plan of care and no support system. I am so happy to have you to go to
                      >> . Thank you for being there. I will try to write a little more about Kim
                      >> tomorrow.
                      >>
                      >> [Non-text portions of this message have been removed]
                      >>
                      >>
                      >>
                      >
                      >


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