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Re: Seizures lasting for 3 weeks!!!!!!

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  • crys_19782001
    My son was hospitaized 3 times for 4 days each when he started having his seizures, he would have them every 15 minutes or so. This was all before he was
    Message 1 of 6 , Aug 6, 2008
      My son was hospitaized 3 times for 4 days each when he started having
      his seizures, he would have them every 15 minutes or so. This was all
      before he was diagnosed in March, they would give him a higher dose of
      seizure medication to stop the seizures then put him on a regular dose,
      which he is still taking twice a day. I'm happy to say he has been
      seizure free since the last episode he had in February. Try asking the
      doctors to give him a large dose of the seizure medication to stop them.

      Hope this helps,
      Crystal mom to Tyson 18 months old


      --- In familiesofangelmansyndrome@yahoogroups.com, "rlnx3" <rlnx3@...>
      wrote:
      >
      > 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
      >
    • 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 2 of 6 , Aug 6, 2008
        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 3 of 6 , Aug 6, 2008
          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 4 of 6 , Aug 6, 2008
            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 5 of 6 , Aug 6, 2008
              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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