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Seizures?

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  • Shannon
    Keira s babysitter just called telling me she thinks she had a seizure. I guess her body was completely stiff and she was shaking..it lasted less than a
    Message 1 of 9 , Jul 1, 2011
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      Keira's babysitter just called telling me she thinks she had a seizure. I guess her body was completely stiff and she was shaking..it lasted less than a minute. Is it possible it could just be the dystonia making her shake?? I don't know exactly what it looked like but I really hope its not seizures :(
      I also need insight on Flunarizine; She started it on Sunday....when should I expect to see results (if any?)

      Thanks everyone, any insight would be extremely appreciated.
      -Shannon, mom to Keira (23 mos)
    • azar hemmaty
      Hi Shannon, May be I should leave the answer to this to the parents with older kids with a lot more experience. In our case, usually when hannah ( 4years old)
      Message 2 of 9 , Jul 1, 2011
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        Hi Shannon,
        May be I should leave the answer to this to the parents with older kids with a lot more experience. In our case, usually when hannah ( 4years old) comes out of seizure, she shakes for a minute, so I would ask the baby sitter if she was staring with no respond, or having rhythmic movement on hand or foot at all( any sign of seizure) before started shaking. Although, I her last hospitalization, after an hour coming out of seizure, while she was heavily sedated, she became stiff and shaking for a long long time. Neither me or neurologists or EEG could say if it is seizure or the episode. I finally decided it is a part of episode and stopped them from injecting her any more seizure medication.
        Hope this help,
        Sincerely,
        Azar





        ________________________________
        From: Shannon <shanleigh85@...>;
        To: <afha@yahoogroups.com>;
        Subject: [ahc] Seizures?
        Sent: Fri, Jul 1, 2011 2:27:58 PM


         
        Keira's babysitter just called telling me she thinks she had a seizure. I guess her body was completely stiff and she was shaking..it lasted less than a minute. Is it possible it could just be the dystonia making her shake?? I don't know exactly what it looked like but I really hope its not seizures :(
        I also need insight on Flunarizine; She started it on Sunday....when should I expect to see results (if any?)

        Thanks everyone, any insight would be extremely appreciated.
        -Shannon, mom to Keira (23 mos)




        [Non-text portions of this message have been removed]
      • kcventi@verizon.net
        Hi Shannon Does Kiera lose consciousness during seizure type event? My daughter has had many weird looking shaking events, tremors in parts of body or all over
        Message 3 of 9 , Jul 1, 2011
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          Hi Shannon

          Does Kiera lose consciousness during seizure type event? My daughter has had many weird looking shaking events, tremors in parts of body or all over body shudders, head bobbling, etc you name it , we've seen it. I wonder how much might be from the meds but drs give us no answers to these events. Neuros then say its anxiety or psuedoseizures and sent us to psyche and pysche says not psuedo seizures and sends us back to neuro.

          One thing I remember was that when we started flunarizine she was 2 yrs old. She started low at 2.5 or 5 a day but had a grandmal seizure and the dr ramped up the med to 7.5/am and 10 pm. She had tremors for 2 days and her 2nd and last instance of one eyed nystagmus which is supposed to be a unique characteristic of AHC. We say the 1st instance at 3 wks old and then this one at 2 yrs and have never seen it again.

          Take care,

          Karen V.



          Jul 1, 2011 10:33:00 AM, afha@yahoogroups.com wrote:

          Hi Shannon,
          May be I should leave the answer to this to the parents with older kids with a lot more experience. In our case, usually when hannah ( 4years old) comes out of seizure, she shakes for a minute, so I would ask the baby sitter if she was staring with no respond, or having rhythmic movement on hand or foot at all( any sign of seizure) before started shaking. Although, I her last hospitalization, after an hour coming out of seizure, while she was heavily sedated, she became stiff and shaking for a long long time. Neither me or neurologists or EEG could say if it is seizure or the episode. I finally decided it is a part of episode and stopped them from injecting her any more seizure medication.
          Hope this help,
          Sincerely,
          Azar

          ________________________________
          From: Shannon <shanleigh85@...>;
          To: <afha@yahoogroups.com>;
          Subject: [ahc] Seizures?
          Sent: Fri, Jul 1, 2011 2:27:58 PM



          Keira's babysitter just called telling me she thinks she had a seizure. I guess her body was completely stiff and she was shaking..it lasted less than a minute. Is it possible it could just be the dystonia making her shake?? I don't know exactly what it looked like but I really hope its not seizures :(
          I also need insight on Flunarizine; She started it on Sunday....when should I expect to see results (if any?)

          Thanks everyone, any insight would be extremely appreciated.
          -Shannon, mom to Keira (23 mos)

          [Non-text portions of this message have been removed]
        • Brenda
          Hi Shannon Seizures come in all shapes and sizes , clonic tonic, simple partial, complex partial , absence etc ... They are USUALLY involving jack of awareness
          Message 4 of 9 , Jul 1, 2011
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            Hi Shannon

            Seizures come in all shapes and sizes , clonic tonic, simple partial, complex partial , absence etc ... They are USUALLY involving jack of awareness or consciousness. A noted parents AHC is tremors which the kids are usually fully conscious and aware


            When Joel started flunarizine (8 years ago) we were told about 6 weeks gor any notable difference


            Good luck

            Brenda
            Joel 9 years
            --- In afha@yahoogroups.com, azar hemmaty <maphhemmaty@...> wrote:
            >
            > Hi Shannon,
            > May be I should leave the answer to this to the parents with older kids with a lot more experience. In our case, usually when hannah ( 4years old) comes out of seizure, she shakes for a minute, so I would ask the baby sitter if she was staring with no respond, or having rhythmic movement on hand or foot at all( any sign of seizure) before started shaking. Although, I her last hospitalization, after an hour coming out of seizure, while she was heavily sedated, she became stiff and shaking for a long long time. Neither me or neurologists or EEG could say if it is seizure or the episode. I finally decided it is a part of episode and stopped them from injecting her any more seizure medication.
            > Hope this help,
            > Sincerely,
            > Azar
            >
            >
            >
            >
            >
            > ________________________________
            > From: Shannon <shanleigh85@...>;
            > To: <afha@yahoogroups.com>;
            > Subject: [ahc] Seizures?
            > Sent: Fri, Jul 1, 2011 2:27:58 PM
            >
            >
            >  
            > Keira's babysitter just called telling me she thinks she had a seizure. I guess her body was completely stiff and she was shaking..it lasted less than a minute. Is it possible it could just be the dystonia making her shake?? I don't know exactly what it looked like but I really hope its not seizures :(
            > I also need insight on Flunarizine; She started it on Sunday....when should I expect to see results (if any?)
            >
            > Thanks everyone, any insight would be extremely appreciated.
            > -Shannon, mom to Keira (23 mos)
            >
            >
            >
            >
            > [Non-text portions of this message have been removed]
            >
          • Vicky Platt
            Shannon, Flunarizine does have a half-life of 19 day days. It will take some time to get into therapeutic range. Good luck. Vicky Platt 773-399-4314 Willamette
            Message 5 of 9 , Jul 1, 2011
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              Shannon,



              Flunarizine does have a half-life of 19 day days. It will take some time
              to get into therapeutic range. Good luck.



              Vicky Platt

              773-399-4314

              Willamette Management Associates

              8600 W. Bryn Mawr, Suite 950-N

              Chicago, Illinois 60631



              From: afha@yahoogroups.com [mailto:afha@yahoogroups.com] On Behalf Of
              Shannon
              Sent: Friday, July 01, 2011 9:28 AM
              To: afha@yahoogroups.com
              Subject: [ahc] Seizures?





              Keira's babysitter just called telling me she thinks she had a seizure.
              I guess her body was completely stiff and she was shaking..it lasted
              less than a minute. Is it possible it could just be the dystonia making
              her shake?? I don't know exactly what it looked like but I really hope
              its not seizures :(
              I also need insight on Flunarizine; She started it on Sunday....when
              should I expect to see results (if any?)

              Thanks everyone, any insight would be extremely appreciated.
              -Shannon, mom to Keira (23 mos)





              [Non-text portions of this message have been removed]
            • Katrina Sliwka
              Even though the half-life of Flunarizine is almost 3 weeks, we saw results with Del in less than a week- significant decrease in hemiplegic episodes. Hope it
              Message 6 of 9 , Jul 1, 2011
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                Even though the half-life of Flunarizine is almost 3 weeks, we saw results
                with Del in less than a week- significant decrease in hemiplegic episodes.
                Hope it is very helpful for Keira!

                On Fri, Jul 1, 2011 at 10:27 AM, Shannon <shanleigh85@...> wrote:

                > **
                >
                >
                > Keira's babysitter just called telling me she thinks she had a seizure. I
                > guess her body was completely stiff and she was shaking..it lasted less than
                > a minute. Is it possible it could just be the dystonia making her shake?? I
                > don't know exactly what it looked like but I really hope its not seizures :(
                >
                > I also need insight on Flunarizine; She started it on Sunday....when should
                > I expect to see results (if any?)
                >
                > Thanks everyone, any insight would be extremely appreciated.
                > -Shannon, mom to Keira (23 mos)
                >
                >
                >


                [Non-text portions of this message have been removed]
              • Lynn Egan
                Kathleen will have severe shaking of her limbs while in a full body dystonic episode. Generally it only lasts for a few minutes.  When Kathleen started
                Message 7 of 9 , Jul 1, 2011
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                  Kathleen will have severe shaking of her limbs while in a full body dystonic episode. Generally it only lasts for a few minutes. 

                  When Kathleen started flunarizine at 13 months, I think we saw result around three weeks after starting. She is now 20. 

                  Lynn

                  --- On Fri, 7/1/11, Shannon <shanleigh85@...> wrote:

                  From: Shannon <shanleigh85@...>
                  Subject: [ahc] Seizures?
                  To: afha@yahoogroups.com
                  Date: Friday, July 1, 2011, 7:27 AM







                   









                  Keira's babysitter just called telling me she thinks she had a seizure. I guess her body was completely stiff and she was shaking..it lasted less than a minute. Is it possible it could just be the dystonia making her shake?? I don't know exactly what it looked like but I really hope its not seizures :(

                  I also need insight on Flunarizine; She started it on Sunday....when should I expect to see results (if any?)



                  Thanks everyone, any insight would be extremely appreciated.

                  -Shannon, mom to Keira (23 mos)






















                  [Non-text portions of this message have been removed]
                • Vicky Azaksken
                  Hi Sharon, Tony (4 yrs. old) has had seizure like episodes , which confuse even the doctors.He has had 15 EEGs  with no abnormal movements.The doctors have
                  Message 8 of 9 , Jul 3, 2011
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                    Hi Sharon,
                    Tony (4 yrs. old) has had seizure like episodes , which confuse even the doctors.He has had 15 EEGs  with no abnormal movements.The doctors have done  tests for sensitivity to light  , taping him while his eyes were ticking and the EEG still came out clear. There have been times where Tony has lost consciousness or his eyes are fixed in a certain direction and he is shaking or having a jerking of 1 limb or 1 side of the body or even opposite hand -leg  shaking movements .Each episode is somewhat different from the other.There have been times when his O2 levels  have dropped during these strange episodes.From what  I've heard, AHC has seizure like episodes which may or may not develop into true seizures over time.
                    As for the Flunarizine, drs. have told me that even a small  increase in the dose can take up to 3 months to start working properly . Tony has had fewer severe episodes (strange eye ticking and so on)after starting this med. Hope this helps. 
                    Vicky &Tony
                    From: Shannon <shanleigh85@...>
                    To: afha@yahoogroups.com
                    Sent: Friday, July 1, 2011 5:27 PM
                    Subject: [ahc] Seizures?


                     
                    Keira's babysitter just called telling me she thinks she had a seizure. I guess her body was completely stiff and she was shaking..it lasted less than a minute. Is it possible it could just be the dystonia making her shake?? I don't know exactly what it looked like but I really hope its not seizures :(
                    I also need insight on Flunarizine; She started it on Sunday....when should I expect to see results (if any?)

                    Thanks everyone, any insight would be extremely appreciated.
                    -Shannon, mom to Keira (23 mos)




                    [Non-text portions of this message have been removed]
                  • Shannon Grady
                    Thank you everyone for your responses. We brought Keira into the neuro that day and of course he suggested we do ANOTHER EEG. I know it will come back normal
                    Message 9 of 9 , Jul 5, 2011
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                      Thank you everyone for your responses.
                      We brought Keira into the neuro that day and of course he suggested we do ANOTHER EEG. I know it will come back normal and it just feels like a waste of time. He isnt quite sure if it was a "real" seizure or not...Im so frusterated with never knowing.

                      But Keira's 2nd Birthday is tomorrow and we are having a pretty big party for her on Saturday...im just hoping she'll enjoy it!



                      --- On Fri, 7/1/11, Lynn Egan <laegan6@...> wrote:

                      > From: Lynn Egan <laegan6@...>
                      > Subject: Re: [ahc] Seizures?
                      > To: afha@yahoogroups.com
                      > Date: Friday, July 1, 2011, 7:28 PM
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                      > Kathleen will have severe shaking of her limbs
                      > while in a full body dystonic episode. Generally it only
                      > lasts for a few minutes. 
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                      > When Kathleen started flunarizine at 13 months, I think we
                      > saw result around three weeks after starting. She is now
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                      > Lynn
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                      > --- On Fri, 7/1/11, Shannon <shanleigh85@...>
                      > wrote:
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                      > From: Shannon <shanleigh85@...>
                      >
                      > Subject: [ahc] Seizures?
                      >
                      > To: afha@yahoogroups.com
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                      > Date: Friday, July 1, 2011, 7:27 AM
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                      >  
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                      > Keira's babysitter just called telling me she thinks
                      > she had a seizure. I guess her body was completely stiff and
                      > she was shaking..it lasted less than a minute. Is it
                      > possible it could just be the dystonia making her shake?? I
                      > don't know exactly what it looked like but I really hope
                      > its not seizures :(
                      >
                      >
                      >
                      > I also need insight on Flunarizine; She started it on
                      > Sunday....when should I expect to see results (if any?)
                      >
                      >
                      >
                      > Thanks everyone, any insight would be extremely
                      > appreciated.
                      >
                      >
                      >
                      > -Shannon, mom to Keira (23 mos)
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