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Re: [Families of Angelman Syndrome] Seizures lasting for 3 weeks!!!!!!

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  • heather smith
    Hi Rhonda, I know how you feel I have been there to many times with my youngest son tyler have they tried diastat or others  or have the drs come up with any
    Message 1 of 6 , Aug 6 7:46 AM
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      Hi Rhonda, I know how you feel I have been there to many times with my youngest son tyler have they tried diastat or others  or have the drs come up with any ideas why he has been seizing for 3 weeks straight or off and on? I know my son has seizures they last a short period of time but has a cluster of them in a row and it seems like he is always having seizures, but that is not uncommon has he had a med change or increase that he can not handle? heather in michigan

      --- On Wed, 8/6/08, rlnx3 <rlnx3@...> wrote:
      From: rlnx3 <rlnx3@...>
      Subject: [Families of Angelman Syndrome] Seizures lasting for 3 weeks!!!!!!
      To: familiesofangelmansyndrome@yahoogroups.com
      Date: Wednesday, August 6, 2008, 10:23 AM











      my little guy is in the hosp twice in the last 3 weeks since he has

      not come out of constant seizure state. i was wanting to see if anyone

      else has gone though this and is there a miracle treatment to stop him

      from seizing that i could enlighten his drs with



      please help

      rhonda





























      [Non-text portions of this message have been removed]
    • rlnx3
      thank you for quick responses. as far as diastat it just slows them down for a short period of time then goes right back . they put him in a coma and drew him
      Message 2 of 6 , Aug 6 8:14 AM
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        thank you for quick responses. as far as diastat it just slows them
        down for a short period of time then goes right back . they put him in
        a coma and drew him out slowly to see if they would stop and they
        didnt. also have done the higher does of depakote. still no help.

        there were no changes in medicine to cause the onset. only changes
        since to try to stop them. i just dont know how much longer his little
        body can take these constant seizures.

        i am so afraid that he will never come out of them. that he is doing
        to be damaged some how. i dont know what to think and wow am so scared
        for him.

        rhonda
      • Meredith Villarreal
        I have not been through this myself but I have heard of this happening and they put a g-tube in and then started the child on the ketio diet. Have they
        Message 3 of 6 , Aug 6 8:46 AM
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          I have not been through this myself but I have heard of this happening and they put a g-tube in and then started the child on the ketio diet. Have they suggested this diet? I will be praying for answers for you and hope the dr's figure something out!!

           Meredith Villarreal
          wife to Carlos
          and mom to
          Triniti 9/21/2003 Angelman Syndrome
          & Liliana 6/16/2007 Leigh's Disease
          froggie4309@...



          ----- Original Message ----
          From: rlnx3 <rlnx3@...>
          To: familiesofangelmansyndrome@yahoogroups.com
          Sent: Wednesday, August 6, 2008 10:14:35 AM
          Subject: Re: [Families of Angelman Syndrome] Seizures lasting for 3 weeks!!!!!!


          thank you for quick responses. as far as diastat it just slows them
          down for a short period of time then goes right back . they put him in
          a coma and drew him out slowly to see if they would stop and they
          didnt. also have done the higher does of depakote. still no help.

          there were no changes in medicine to cause the onset. only changes
          since to try to stop them. i just dont know how much longer his little
          body can take these constant seizures.

          i am so afraid that he will never come out of them. that he is doing
          to be damaged some how. i dont know what to think and wow am so scared
          for him.

          rhonda






          [Non-text portions of this message have been removed]
        • Wells Nicole
          I know they have probably already checked his blood sugar but Brandon has had that happen a few times (not for 3 weeks) and when they started an IV with the
          Message 4 of 6 , Aug 6 9:44 AM
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            I know they have probably already checked his blood sugar but Brandon has had that happen a few times (not for 3 weeks) and when they started an IV with the sugar water stuff (sorry I can't recall the name) he came out of them.  For some reason he has had a decrease in sugar a few times and that causes his seizure clusters.  Just something else to check.
            Nicole

            --- On Wed, 8/6/08, rlnx3 <rlnx3@...> wrote:

            From: rlnx3 <rlnx3@...>
            Subject: [Families of Angelman Syndrome] Seizures lasting for 3 weeks!!!!!!
            To: familiesofangelmansyndrome@yahoogroups.com
            Date: Wednesday, August 6, 2008, 7:23 AM






            my little guy is in the hosp twice in the last 3 weeks since he has
            not come out of constant seizure state. i was wanting to see if anyone
            else has gone though this and is there a miracle treatment to stop him
            from seizing that i could enlighten his drs with

            please help
            rhonda


















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