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Re: [Families of Angelman Syndrome] Clonodine-Calling all Angel parents!

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  • Emily Giles
    Hi. My son Lee is 2yrs 4mo. and he had been having those little seizures, just falling over, looking like he was just falling asleep and stuff. I don t think
    Message 1 of 8 , Feb 1, 2007
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      Hi. My son Lee is 2yrs 4mo. and he had been having
      those little seizures, just falling over, looking like
      he was just falling asleep and stuff. I don't think
      any of the docs believed that we knew what we were
      talking about. My Mom had even noticed him staring
      briefly. I had times where he would just look off to
      one side and I couldn't get his attention. He had a
      major seizure on 2 different occasions, one after he
      had a flu shot, and another one when he had the
      rotavirus...so, they thought and I was therefore
      convinced that it was only because of a high fast
      fever. Then in November he had a major seizure and 3
      days later had another! There was nothing to relate it
      to... So, the doctors decided to put him on Keppra.
      Well, the pharmacist was a nervous wreck, saying the
      dosage info didn't go down to his age. Well, his
      doctors had talked to the doctors at Vanderbilt and
      based the amount on his weight. So, we slowly worked
      our way up to 1.5 ml twice a day. The change was
      amazing! He hasn't had any other seizures.
      Occasionally, if he is feeling bad he may begin to
      look like he might have a problem....but so far, so
      good! All of the drop seizures and shaky falling over
      is gone. His therapists have been thrilled. He used to
      scoot on his butt or cruise hanging on furniture...but
      now he crawls very quickly and cruises almost able to
      let go. The pt has been focusing on transitioning from
      one piece of furniture to another and getting up to a
      standing position without having to pull up on
      something. I don't know anyone else who has had Keppra
      but especially if you have had a major seizure you
      might ask the doctor. The doctor also prescribed a
      rectal gel that is a form of valium in case he goes
      into a seizure lasting over 3 minutes before taking
      him to the ER, it is supposed to stop the seizure
      almost immediately! Hopefully, I will never have to
      find out how fast! But it is a good thing to have.
      In response to sleep, people think I am just letting
      him nap and that is why he doesn't sleep! But before
      the medication especially, if he didn't get a nap he
      would just fall over! Most of the time we only sleep
      about 5 hours max at a time. Occasionally, he will sit
      up and play quietly for awhile, but mostly he will
      wake us up for a couple of hours to play! As far as
      sleeping locations go, he was shaking the bed and
      climbing over the fence panel play areas... I was so
      afraid I might fall asleep and he would get hurt. So,
      we have put his mattress in the child's play tent! It
      has been great, until he learns how to unzip the
      zipper! Many people I have read are modifying bunk
      beds for their children, I'm guessing that will be in
      our future as well. The bit about child proofing the
      room better doesn't cut it. The only other safe choice
      as I see it is to just lay a mattress on the floor,
      otherwise you risk them falling out of a toddler bed
      and getting hurt. Then you also have something to
      climb on, the list goes on!!!! Tell me more about your
      son...it sounds like he and Lee are close in age and
      habits too!!!
      Emily


      --- SUSAN WINFREY <okswinfrey@...> wrote:

      > That sounds like one of my days. The happy meal.
      > That really gave me a chuckle though, thanks .
      > Don't you get tired of dealing with docs, neuros,
      > and p.t.s. I tell you. I really don't have a
      > response to Clonodine I just wish I could I could
      > give you more support. Well of course I could use
      > some myself. I live in Grove, Oklahoma, where is
      > Missouri do you live?
      > I will remember Clonodine if it does good for your
      > child. I just started Ian on Topomax for his drop
      > seizures, he's only two. Know anything about that?
      > Hang in there gotta go, Susan
      >
      > iamdonna42701 <iamdonna42701@...> wrote:
      > First of all I want to apologize that I
      > don't get to alot of you
      > often. Your love and support has helped so much. I
      > wish I had time to
      > reply to each and everyone of you. Know that I
      > really appreciate this
      > group, and each and every one of you!
      >
      > We went to the neuro yesterday. It was not good. She
      > wasn't very
      > sympathetic that my angel did not sleep, told me
      > that I wasn't being
      > firm enough with him, basically said I was being a
      > push-over and that
      > I needed just to lay him down, forget about him and
      > get rest myself.
      > UMMM, YEAH RIGHT!!!
      >
      > So, finally after crying there, crying on the way
      > home, and crying
      > some more today I realized that I am not going to
      > waste anymore time
      > being upset...unless you have an Angel you really
      > don't understand.
      > This is why I love talking with all of you. I only
      > wish we lived
      > closer because last night was horrible and I would
      > have needed to drop
      > by your house for some dinner and comfort! LOL...the
      > kitten ate my
      > son's Happy Meal! I sat it on the table, went to get
      > him ready in his
      > seat at the kitchen table and it was GONE! I was so
      > upset because I
      > had a long day of travel to the neuro and didn't
      > feel like cooking
      > dinner...bought the Happy Meal and ended up cooking
      > supper anyway!
      > WWWWWWWWWHHHHHHHHEEEEEEEEEWWWWWWWWW!
      >
      > Okay, so the nuero put him on Clonodine. It worked
      > like a miracle
      > last night. He was out at 9 and slept till 8 am. Was
      > alert and ready
      > for therapy today. I read all the side effects and
      > of course I did
      > not sleep well last night because I had to keep
      > getting up to check on
      > him. =)
      >
      > Please tell me what your experiences were if your
      > child takes or has
      > taken Clonodine. I know every child is different
      > but, I would
      > appreciate to hear your experiences.
      >
      > Oh, yeah, and the neuro, even after protesting,
      > discouraged me from
      > getting an enclosed bed. I was told to baby proof
      > his room better and
      > to just shut the door, put a special handle on that
      > he could not open,
      > and leave him in there to cry it out. Yeah. In 6
      > months we have a
      > follow up and the dr said that a script may be
      > written up for one but,
      > it is impossible in the state of Missouri to get an
      > enclosed bed.
      >
      > So, please share your stories. Thank you bunches!
      >
      > Donna,
      > mother of Josh -3
      >
      >
      >
      >
      >
      >
      > [Non-text portions of this message have been
      > removed]
      >
      >




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    • SUSAN WINFREY
      Emily, I m glad your son is doing better with his seizures. My son, just turned 2 December 6th. It makes me sad though, it seems the majority of the young
      Message 2 of 8 , Feb 1, 2007
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        Emily,
        I'm glad your son is doing better with his seizures. My son, just turned 2 December 6th.
        It makes me sad though, it seems the majority of the young ones can at least scoot around or crawl, mine doesn't. When he lays on his back he can get on his side and rotate his legs around to change directions and eventually will move around the floor that way. You know the way a break dancer would, but way slower. I put him in a stander and he has a walker that we try and get him to move his legs in by holding a toy to get him to come to it. I have to put a leash on it to keep any movement that he makes from going backwards. He usually will bounce and barely move his legs to puposefully get anywhere.
        If anyone has any suggestions or tips that could help, I would sure take any. He really doesn't use his arms for any movement on the floor, except to grab toys. Well, talk to you all soon, Susan (Ian's mom).

        Emily Giles <elfgiles@...> wrote:
        Hi. My son Lee is 2yrs 4mo. and he had been having
        those little seizures, just falling over, looking like
        he was just falling asleep and stuff. I don't think
        any of the docs believed that we knew what we were
        talking about. My Mom had even noticed him staring
        briefly. I had times where he would just look off to
        one side and I couldn't get his attention. He had a
        major seizure on 2 different occasions, one after he
        had a flu shot, and another one when he had the
        rotavirus...so, they thought and I was therefore
        convinced that it was only because of a high fast
        fever. Then in November he had a major seizure and 3
        days later had another! There was nothing to relate it
        to... So, the doctors decided to put him on Keppra.
        Well, the pharmacist was a nervous wreck, saying the
        dosage info didn't go down to his age. Well, his
        doctors had talked to the doctors at Vanderbilt and
        based the amount on his weight. So, we slowly worked
        our way up to 1.5 ml twice a day. The change was
        amazing! He hasn't had any other seizures.
        Occasionally, if he is feeling bad he may begin to
        look like he might have a problem....but so far, so
        good! All of the drop seizures and shaky falling over
        is gone. His therapists have been thrilled. He used to
        scoot on his butt or cruise hanging on furniture...but
        now he crawls very quickly and cruises almost able to
        let go. The pt has been focusing on transitioning from
        one piece of furniture to another and getting up to a
        standing position without having to pull up on
        something. I don't know anyone else who has had Keppra
        but especially if you have had a major seizure you
        might ask the doctor. The doctor also prescribed a
        rectal gel that is a form of valium in case he goes
        into a seizure lasting over 3 minutes before taking
        him to the ER, it is supposed to stop the seizure
        almost immediately! Hopefully, I will never have to
        find out how fast! But it is a good thing to have.
        In response to sleep, people think I am just letting
        him nap and that is why he doesn't sleep! But before
        the medication especially, if he didn't get a nap he
        would just fall over! Most of the time we only sleep
        about 5 hours max at a time. Occasionally, he will sit
        up and play quietly for awhile, but mostly he will
        wake us up for a couple of hours to play! As far as
        sleeping locations go, he was shaking the bed and
        climbing over the fence panel play areas... I was so
        afraid I might fall asleep and he would get hurt. So,
        we have put his mattress in the child's play tent! It
        has been great, until he learns how to unzip the
        zipper! Many people I have read are modifying bunk
        beds for their children, I'm guessing that will be in
        our future as well. The bit about child proofing the
        room better doesn't cut it. The only other safe choice
        as I see it is to just lay a mattress on the floor,
        otherwise you risk them falling out of a toddler bed
        and getting hurt. Then you also have something to
        climb on, the list goes on!!!! Tell me more about your
        son...it sounds like he and Lee are close in age and
        habits too!!!
        Emily

        --- SUSAN WINFREY <okswinfrey@...> wrote:

        > That sounds like one of my days. The happy meal.
        > That really gave me a chuckle though, thanks .
        > Don't you get tired of dealing with docs, neuros,
        > and p.t.s. I tell you. I really don't have a
        > response to Clonodine I just wish I could I could
        > give you more support. Well of course I could use
        > some myself. I live in Grove, Oklahoma, where is
        > Missouri do you live?
        > I will remember Clonodine if it does good for your
        > child. I just started Ian on Topomax for his drop
        > seizures, he's only two. Know anything about that?
        > Hang in there gotta go, Susan
        >
        > iamdonna42701 <iamdonna42701@...> wrote:
        > First of all I want to apologize that I
        > don't get to alot of you
        > often. Your love and support has helped so much. I
        > wish I had time to
        > reply to each and everyone of you. Know that I
        > really appreciate this
        > group, and each and every one of you!
        >
        > We went to the neuro yesterday. It was not good. She
        > wasn't very
        > sympathetic that my angel did not sleep, told me
        > that I wasn't being
        > firm enough with him, basically said I was being a
        > push-over and that
        > I needed just to lay him down, forget about him and
        > get rest myself.
        > UMMM, YEAH RIGHT!!!
        >
        > So, finally after crying there, crying on the way
        > home, and crying
        > some more today I realized that I am not going to
        > waste anymore time
        > being upset...unless you have an Angel you really
        > don't understand.
        > This is why I love talking with all of you. I only
        > wish we lived
        > closer because last night was horrible and I would
        > have needed to drop
        > by your house for some dinner and comfort! LOL...the
        > kitten ate my
        > son's Happy Meal! I sat it on the table, went to get
        > him ready in his
        > seat at the kitchen table and it was GONE! I was so
        > upset because I
        > had a long day of travel to the neuro and didn't
        > feel like cooking
        > dinner...bought the Happy Meal and ended up cooking
        > supper anyway!
        > WWWWWWWWWHHHHHHHHEEEEEEEEEWWWWWWWWW!
        >
        > Okay, so the nuero put him on Clonodine. It worked
        > like a miracle
        > last night. He was out at 9 and slept till 8 am. Was
        > alert and ready
        > for therapy today. I read all the side effects and
        > of course I did
        > not sleep well last night because I had to keep
        > getting up to check on
        > him. =)
        >
        > Please tell me what your experiences were if your
        > child takes or has
        > taken Clonodine. I know every child is different
        > but, I would
        > appreciate to hear your experiences.
        >
        > Oh, yeah, and the neuro, even after protesting,
        > discouraged me from
        > getting an enclosed bed. I was told to baby proof
        > his room better and
        > to just shut the door, put a special handle on that
        > he could not open,
        > and leave him in there to cry it out. Yeah. In 6
        > months we have a
        > follow up and the dr said that a script may be
        > written up for one but,
        > it is impossible in the state of Missouri to get an
        > enclosed bed.
        >
        > So, please share your stories. Thank you bunches!
        >
        > Donna,
        > mother of Josh -3
        >
        >
        >
        >
        >
        >
        > [Non-text portions of this message have been
        > removed]
        >
        >

        __________________________________________________________
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        Have a HUGE year through Yahoo! Small Business.
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        [Non-text portions of this message have been removed]
      • Emily Giles
        It is interesting how you talk about him going backwards! Lee would always push up and back in his walker. By the time he started doing any of that though he
        Message 3 of 8 , Feb 3, 2007
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          It is interesting how you talk about him going
          backwards! Lee would always push up and back in his
          walker. By the time he started doing any of that
          though he was almost to big to use it. But I think
          many kids do that sort of thing. One of my nephews
          (with no disability I might add) crawled backwards
          half scooting until he would back up to a wall and
          couldn't go any farther and then get mad. I wouldn't
          worry, everyday Lee does something he didn't the day
          before! Other people may not see it or understand,
          even your closest friends no matter how much they want
          to. My favorite is when the therapists want to work on
          imitation or something and he will do it all day long
          at home, banging two blocks together or whatever...
          but when he is at therapy he refuses, and then when
          they try hand over hand he likes to jerk his hands
          away! I'm trying to catch some video for them because
          I know they must get discouraged, but some days its
          almost funny. Keep your chin up! People were
          constantly telling me that he would roll over or crawl
          or whatever when he got mad or tired of being on his
          belly, but he couldn't because he didn't have the
          upper body strength and also, he probably was upset
          since he couldn't hold his head up well enough to see
          when he was on his belly. One of my other favorites is
          how if I wouldn't allow him to take naps in the middle
          of the day that he would sleep through the night like
          their kids do.
          It's great to hear from someone who understands.
          Emily

          --- SUSAN WINFREY <okswinfrey@...> wrote:

          > Emily,
          > I'm glad your son is doing better with his
          > seizures. My son, just turned 2 December 6th.
          > It makes me sad though, it seems the majority of
          > the young ones can at least scoot around or crawl,
          > mine doesn't. When he lays on his back he can get
          > on his side and rotate his legs around to change
          > directions and eventually will move around the floor
          > that way. You know the way a break dancer would,
          > but way slower. I put him in a stander and he has a
          > walker that we try and get him to move his legs in
          > by holding a toy to get him to come to it. I have
          > to put a leash on it to keep any movement that he
          > makes from going backwards. He usually will bounce
          > and barely move his legs to puposefully get
          > anywhere.
          > If anyone has any suggestions or tips that could
          > help, I would sure take any. He really doesn't use
          > his arms for any movement on the floor, except to
          > grab toys. Well, talk to you all soon, Susan
          > (Ian's mom).
          >
          > Emily Giles <elfgiles@...> wrote:
          > Hi. My son Lee is 2yrs 4mo. and he had
          > been having
          > those little seizures, just falling over, looking
          > like
          > he was just falling asleep and stuff. I don't think
          > any of the docs believed that we knew what we were
          > talking about. My Mom had even noticed him staring
          > briefly. I had times where he would just look off to
          > one side and I couldn't get his attention. He had a
          > major seizure on 2 different occasions, one after he
          > had a flu shot, and another one when he had the
          > rotavirus...so, they thought and I was therefore
          > convinced that it was only because of a high fast
          > fever. Then in November he had a major seizure and 3
          > days later had another! There was nothing to relate
          > it
          > to... So, the doctors decided to put him on Keppra.
          > Well, the pharmacist was a nervous wreck, saying the
          > dosage info didn't go down to his age. Well, his
          > doctors had talked to the doctors at Vanderbilt and
          > based the amount on his weight. So, we slowly worked
          > our way up to 1.5 ml twice a day. The change was
          > amazing! He hasn't had any other seizures.
          > Occasionally, if he is feeling bad he may begin to
          > look like he might have a problem....but so far, so
          > good! All of the drop seizures and shaky falling
          > over
          > is gone. His therapists have been thrilled. He used
          > to
          > scoot on his butt or cruise hanging on
          > furniture...but
          > now he crawls very quickly and cruises almost able
          > to
          > let go. The pt has been focusing on transitioning
          > from
          > one piece of furniture to another and getting up to
          > a
          > standing position without having to pull up on
          > something. I don't know anyone else who has had
          > Keppra
          > but especially if you have had a major seizure you
          > might ask the doctor. The doctor also prescribed a
          > rectal gel that is a form of valium in case he goes
          > into a seizure lasting over 3 minutes before taking
          > him to the ER, it is supposed to stop the seizure
          > almost immediately! Hopefully, I will never have to
          > find out how fast! But it is a good thing to have.
          > In response to sleep, people think I am just letting
          > him nap and that is why he doesn't sleep! But before
          > the medication especially, if he didn't get a nap he
          > would just fall over! Most of the time we only sleep
          > about 5 hours max at a time. Occasionally, he will
          > sit
          > up and play quietly for awhile, but mostly he will
          > wake us up for a couple of hours to play! As far as
          > sleeping locations go, he was shaking the bed and
          > climbing over the fence panel play areas... I was so
          > afraid I might fall asleep and he would get hurt.
          > So,
          > we have put his mattress in the child's play tent!
          > It
          > has been great, until he learns how to unzip the
          > zipper! Many people I have read are modifying bunk
          > beds for their children, I'm guessing that will be
          > in
          > our future as well. The bit about child proofing the
          > room better doesn't cut it. The only other safe
          > choice
          > as I see it is to just lay a mattress on the floor,
          > otherwise you risk them falling out of a toddler bed
          > and getting hurt. Then you also have something to
          > climb on, the list goes on!!!! Tell me more about
          > your
          > son...it sounds like he and Lee are close in age and
          > habits too!!!
          > Emily
          >
          > --- SUSAN WINFREY <okswinfrey@...> wrote:
          >
          > > That sounds like one of my days. The happy meal.
          > > That really gave me a chuckle though, thanks .
          > > Don't you get tired of dealing with docs, neuros,
          > > and p.t.s. I tell you. I really don't have a
          > > response to Clonodine I just wish I could I could
          > > give you more support. Well of course I could use
          > > some myself. I live in Grove, Oklahoma, where is
          > > Missouri do you live?
          > > I will remember Clonodine if it does good for your
          > > child. I just started Ian on Topomax for his drop
          > > seizures, he's only two. Know anything about that?
          >
          > > Hang in there gotta go, Susan
          > >
          > > iamdonna42701 <iamdonna42701@...> wrote:
          > > First of all I want to apologize that I
          > > don't get to alot of you
          > > often. Your love and support has helped so much. I
          > > wish I had time to
          > > reply to each and everyone of you. Know that I
          > > really appreciate this
          > > group, and each and every one of you!
          > >
          > > We went to the neuro yesterday. It was not good.
          > She
          > > wasn't very
          > > sympathetic that my angel did not sleep, told me
          > > that I wasn't being
          > > firm enough with him, basically said I was being a
          > > push-over and that
          > > I needed just to lay him down, forget about him
          > and
          > > get rest myself.
          > > UMMM, YEAH RIGHT!!!
          > >
          > > So, finally after crying there, crying on the way
          > > home, and crying
          > > some more today I realized that I am not going to
          > > waste anymore time
          > > being upset...unless you have an Angel you really
          > > don't understand.
          > > This is why I love talking with all of you. I only
          > > wish we lived
          > > closer because last night was horrible and I would
          > > have needed to drop
          > > by your house for some dinner and comfort!
          > LOL...the
          > > kitten ate my
          > > son's Happy Meal! I sat it on the table, went to
          > get
          > > him ready in his
          > > seat at the kitchen table and it was GONE! I was
          > so
          > > upset because I
          > > had a long day of travel to the neuro and didn't
          > > feel like cooking
          > > dinner...bought the Happy Meal and ended up
          > cooking
          > > supper anyway!
          > > WWWWWWWWWHHHHHHHHEEEEEEEEEWWWWWWWWW!
          > >
          > > Okay, so the nuero put him on Clonodine. It worked
          > > like a miracle
          > > last night. He was out at 9 and slept till 8 am.
          > Was
          > > alert and ready
          > > for therapy today. I read all the side effects and
          > > of course I did
          > > not sleep well last night because I had to keep
          > > getting up to check on
          > > him. =)
          > >
          > > Please tell me what your experiences were if your
          > > child takes or has
          > > taken Clonodine. I know every child is different
          > > but, I would
          > > appreciate to hear your experiences.
          > >
          > > Oh, yeah, and the neuro, even after protesting,
          > > discouraged me from
          > > getting an enclosed bed. I was told to baby proof
          > > his room better and
          > > to just shut the door, put a special handle on
          > that
          > > he could not open,
          > > and leave him in there to cry it out. Yeah. In 6
          > > months we have a
          > > follow up and the dr said that a script may be
          > > written up for one but,
          > > it is impossible in the state of Missouri to get
          > an
          > > enclosed bed.
          > >
          > > So, please share your stories. Thank you bunches!
          > >
          > > Donna,
          > > mother of Josh -3
          > >
          > >
          >
          === message truncated ===




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