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Thoughts on therapies, sleep issues, exotropia surgery, teething, and resources

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  • alysonsinclair1
    Hello, I m new to this email list as my son Noah (13 months) was diagnosed three weeks ago with AS (deletion positive). Noah was originally diagnosed at around
    Message 1 of 3 , Mar 31, 2004
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      Hello,

      I'm new to this email list as my son Noah (13 months) was diagnosed
      three weeks ago with AS (deletion positive).

      Noah was originally diagnosed at around 8 months with benign
      congenital hypotonia and with exotropia. It was only because we had
      an extensive workup done of Noah which all came back normal (an MRI,
      EEG, complete metabolic analysis) that we decided to go to the next
      step and do a genetic evaluation which came back positive for AS.
      While we've been involved in various therapies for the past 4 months
      due to his developmental delays, we're now looking to refocus our
      efforts to help our son learn and thrive to the best of his
      abilities with AS. In this regard, I had a number of questions that
      I'd love to get some feedback on. I realize that all of these have
      probably been discussed on this board time and time again, but we
      just recently signed up. Any constructive thoughts,
      recommendations or encouraging words would be greatly (and I mean
      greatly) appreciated.

      (1) Therapies -- Noah is presently in an Early Start Program, a
      state funded program in California, that provides him with two 1
      hour home visits a month (either PT, OT, or ST) and a weekly 1 hour
      play session with other special needs children under 18 months of
      age who participate in the Early Start Program. Obviously, the PT
      is pretty critical right now but we're already thinking that we'll
      need to find a Speech Therapist who is focused on augmented
      communications or a combined OT/ST, but we'd like to get feedback on
      the types of therapies that people have found to be most helpful at
      various stages -- particularly in the 1 to 2 year old time frame.
      Among other things, we are wondering about things like water
      therapy, equine therapy, more focused ST (such as assisted or
      augmented communications) or other "alternative" therapies. Also,
      any thoughts on things that you wish you would have done or started
      earlier would be extremely helpful.

      (2) Sleep – Noah goes to sleep at approx. 8pm and doesn't have any
      problem going to sleep. Occasionally, he will wake up one time
      during the night in which he cries out and that can occur at either
      3am, 4am or 5am. He will then go back to sleep at wake up at around
      7am.

      We now use an empty bottle in his crib, which he uses as a
      pacifier. We're not sure how good this is as he is clearly using it
      as a crutch but it generally helps him self-soothe and go back to
      sleep and will sleep through the night. Nonetheless, on occasion,
      his empty bottle will not soothe him and he wakes up crying once in
      the middle of the night (either 3am, 4am, or 5am) and typically
      requires an ounce or two of water in his bottle and me coaxing him
      back to sleep which can take anywhere from 10-45 minutes. I realize
      that many AS kids have sleep issues, but is this something we should
      be concerned about? Should we be thinking about using melatonin?

      (3) Cranial-Sacral therapy -- Noah hasn't had any seizures to date
      but we've heard from one person that they've had some success with
      reducing seizures through Cranial-Sacral therapy. Can anyone add
      any thoughts based on their experience, particularly with regard to
      seizures? Does anyone have any other ideas on what, if anything, we
      could be doing now to prevent seizures from occurring and/or lessen
      the potential impacts from or occurrences of seizures?

      (4) Exotropia Surgery -- Noah has intermittent exotropia in both
      eyes and we've been patching for the past two months or so. While
      he generally tolerates the patching (probably due to his lack of
      fine motor ability to rip the patches off), we're wondering whether
      we should be thinking more seriously about surgery in order to
      correct the problem and improve his depth perception and, perhaps,
      gross and fine motor abilities. Three questions: (a) any thoughts
      on experience with the surgery either pro or con; (b) when is the
      best time to do the surgery; and (c) did anyone notice a profound
      difference in their child's motor, fine motor, and vision abilities
      after the surgery?

      (5) Late Teething – Noah got his first two teeth at 1 years old.
      We're wondering if this is AS related or whether Noah is just on the
      outside of the normal curve for teething. Anyone have any thoughts
      or experience with this?

      (6) Books/Resources -- We're been gathering up a number of books
      regarding child development and special needs children, including
      Stanley Greenspan's "The Child with Special Needs." Does anyone
      have any recommendations on specific books that provide either
      insight or direction on teaching and working with a special needs
      child that seem particularly appropriate to kids with AS?

      Thanks so much for your help. While the past month has truly been
      the most difficult of our lives, we are looking forward to a bright
      future with our wonderful and beautiful son.

      All the best,

      Alyson Sinclair and David Lazerwitz, parents to Noah, 13mo (del +).
    • worknomoresue
      -Hi Alyson, It sounds like you are on top of things! My daughter, Teagan, finally has been diagnoised with Clinical Anglemans. I have suspected Angelmans
      Message 2 of 3 , Apr 3, 2004
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        -Hi Alyson,
        It sounds like you are on top of things! My daughter, Teagan,
        finally has been diagnoised with Clinical Anglemans. I have
        suspected Angelmans since she was 13mos. We have tailored all of
        her therapies since she was 13mos as if this was her diagnosis.
        First, Speech and OT are critical. Although she cannot say more
        than about 5 words, she does at times parrot other words. She also
        signs. Signing for Kids by Mickey Floden is a wonderful resource.
        We tried the cheap talk, but due to her age it really didn't work.
        But it is something we will try again later.
        PT- Hippo therapy has long waiting lists and I believe they will
        not start a child until they are 4yrs old. We do take Teagan to the
        pool and she loves it. It helps her awareness of her body and also
        relaxes her. I have had a hard time trying to find an aquatics
        instructor that will work with a child this young, so we just go and
        do the best we can.
        Nutrition- I have a ton of opinions and info on this subject if you
        are interested.
        My daughter had a BAER test that shows that she has a severe
        processing problem visually. We cannot determine if she has an
        acuity loss due to the fact she cannot speak. However, I have taken
        her to a Developmental Optometrist who has given her prizm glasses.
        The results were amazing!!! She stands straighter, looks around the
        room and I believe is finally learning to use her vision. She also
        receives Vision Therapy from our local school system.
        Cranial Sacrial therapy worked for us from the age of 18 mos to 2
        yrs. It did wonders for her constipation! The person we took her
        to was 70 miles away and also believed in iridology (sp?) anyway,
        she said some really disturbing things during one session (our last)
        like "Teagan you are not going to die when you are 4...you're too
        strong for that." I was blown away and never went back. Did it
        help her seizures? Maybe, she had her first seizure this January.
        Although she has had absence spells since she was about 6 months old.
        I have read a lot of information and will be happy to share some
        thoughts if you are interested. I have received alot of good info
        from books on Autism just to help broaden my approach.
        I hope this helps. I look forward to talking with you.
        Sue Harris, Mom of Teagan 33 mos, little sister to Chris, Jim and
        Carly.

        -- In familiesofangelmansyndrome@yahoogroups.com, "alysonsinclair1"
        <alysonsinclair@h...> wrote:
        > Hello,
        >
        > I'm new to this email list as my son Noah (13 months) was
        diagnosed
        > three weeks ago with AS (deletion positive).
        >
        > Noah was originally diagnosed at around 8 months with benign
        > congenital hypotonia and with exotropia. It was only because we
        had
        > an extensive workup done of Noah which all came back normal (an
        MRI,
        > EEG, complete metabolic analysis) that we decided to go to the
        next
        > step and do a genetic evaluation which came back positive for AS.
        > While we've been involved in various therapies for the past 4
        months
        > due to his developmental delays, we're now looking to refocus our
        > efforts to help our son learn and thrive to the best of his
        > abilities with AS. In this regard, I had a number of questions
        that
        > I'd love to get some feedback on. I realize that all of these
        have
        > probably been discussed on this board time and time again, but we
        > just recently signed up. Any constructive thoughts,
        > recommendations or encouraging words would be greatly (and I mean
        > greatly) appreciated.
        >
        > (1) Therapies -- Noah is presently in an Early Start Program, a
        > state funded program in California, that provides him with two 1
        > hour home visits a month (either PT, OT, or ST) and a weekly 1
        hour
        > play session with other special needs children under 18 months of
        > age who participate in the Early Start Program. Obviously, the PT
        > is pretty critical right now but we're already thinking that we'll
        > need to find a Speech Therapist who is focused on augmented
        > communications or a combined OT/ST, but we'd like to get feedback
        on
        > the types of therapies that people have found to be most helpful
        at
        > various stages -- particularly in the 1 to 2 year old time frame.
        > Among other things, we are wondering about things like water
        > therapy, equine therapy, more focused ST (such as assisted or
        > augmented communications) or other "alternative" therapies. Also,
        > any thoughts on things that you wish you would have done or
        started
        > earlier would be extremely helpful.
        >
        > (2) Sleep – Noah goes to sleep at approx. 8pm and doesn't have any
        > problem going to sleep. Occasionally, he will wake up one time
        > during the night in which he cries out and that can occur at
        either
        > 3am, 4am or 5am. He will then go back to sleep at wake up at
        around
        > 7am.
        >
        > We now use an empty bottle in his crib, which he uses as a
        > pacifier. We're not sure how good this is as he is clearly using
        it
        > as a crutch but it generally helps him self-soothe and go back to
        > sleep and will sleep through the night. Nonetheless, on occasion,
        > his empty bottle will not soothe him and he wakes up crying once
        in
        > the middle of the night (either 3am, 4am, or 5am) and typically
        > requires an ounce or two of water in his bottle and me coaxing him
        > back to sleep which can take anywhere from 10-45 minutes. I
        realize
        > that many AS kids have sleep issues, but is this something we
        should
        > be concerned about? Should we be thinking about using melatonin?
        >
        > (3) Cranial-Sacral therapy -- Noah hasn't had any seizures to date
        > but we've heard from one person that they've had some success with
        > reducing seizures through Cranial-Sacral therapy. Can anyone add
        > any thoughts based on their experience, particularly with regard
        to
        > seizures? Does anyone have any other ideas on what, if anything,
        we
        > could be doing now to prevent seizures from occurring and/or
        lessen
        > the potential impacts from or occurrences of seizures?
        >
        > (4) Exotropia Surgery -- Noah has intermittent exotropia in both
        > eyes and we've been patching for the past two months or so. While
        > he generally tolerates the patching (probably due to his lack of
        > fine motor ability to rip the patches off), we're wondering
        whether
        > we should be thinking more seriously about surgery in order to
        > correct the problem and improve his depth perception and, perhaps,
        > gross and fine motor abilities. Three questions: (a) any
        thoughts
        > on experience with the surgery either pro or con; (b) when is the
        > best time to do the surgery; and (c) did anyone notice a profound
        > difference in their child's motor, fine motor, and vision
        abilities
        > after the surgery?
        >
        > (5) Late Teething – Noah got his first two teeth at 1 years old.
        > We're wondering if this is AS related or whether Noah is just on
        the
        > outside of the normal curve for teething. Anyone have any
        thoughts
        > or experience with this?
        >
        > (6) Books/Resources -- We're been gathering up a number of books
        > regarding child development and special needs children, including
        > Stanley Greenspan's "The Child with Special Needs." Does anyone
        > have any recommendations on specific books that provide either
        > insight or direction on teaching and working with a special needs
        > child that seem particularly appropriate to kids with AS?
        >
        > Thanks so much for your help. While the past month has truly been
        > the most difficult of our lives, we are looking forward to a
        bright
        > future with our wonderful and beautiful son.
        >
        > All the best,
        >
        > Alyson Sinclair and David Lazerwitz, parents to Noah, 13mo (del +).
      • Stephnaie Gromowski
        Hi, my name is Stephanie and I am 15 almost 16. My nephew Jacob will be 4 in August and is a joy to be around. His parents are going through a divorce so it is
        Message 3 of 3 , Apr 4, 2004
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          Hi, my name is Stephanie and I am 15 almost 16. My nephew Jacob will be 4 in August and is a joy to be around. His parents are going through a divorce so it is really hard for the family and Jacob. My brother, the dad, is trying to get custody because the mom really has no time for all of his need.

          Jacob sleep like a normal baby before we found out he had AS. Even after we found out he slept good for awhile. So he started waking up in the middle of the nights with a cry. Then he would just sit in his bed and play with toys. He is now on malitonin and takes 3 mg. of it. We soak it in water, then 30 minutes before his bed time we put it in a pudding and feed to him. Then in thirty minutes he is ready to go to sleep. He might wake up and play with toys but falls asleep with in litle or no time. So Noah might start having trouble, or he might not have any problems with sleeping.

          Jacob has only had one seizure. That was on August 19, 2003. Nine days after his birthday. He woke up from a nap, and just layed there with his eyes twitching from side to side. He was at our house when his dad went with my dad and little brotehr to go somewhere. My mom, my little sister, and me were there. I told my mom something was wrong and that we needed to go to the emergency room, so I picked him up, took him to the car, and layed him in his carseat. He was lifless and it was so scary. When we got to the doctor they had to call to Childrens Mercy in Kansas City because they had never heard of AS. So he ended up waking up from this seizure and was ok. But it was very scary.

          If you have anymore questions feel free to contact me. Thanks. Steohanie



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