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Re: [Families of Angelman Syndrome] Digest Number 136

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  • leah benge
    When olivia was young, she never slept. She would go days at a time without sleeping at all, then just drop exhausted, but only for a few hours. Then we had
    Message 1 of 2 , Apr 2, 2005
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      When olivia was young, she never slept. She would go days at a time without sleeping at all, then just drop exhausted, but only for a few hours. Then we had about a two year period of time where it was ten minute power naps every two hours, on the hour, around the clock. That phase went into sleeping two to three hours of a night, but up all day. We tried everything from behavior modification to strict routine to prescription meds (clonidine and elavil). The prescriptions worked, and she would sleep for ten hours...as long as there was no noise, I stayed in bed with her, no one opened the bedroom door, etc. ONce she was awake, the whole night was lost.

      I started using melatonin about a year ago and it is the best thing by far for Olivia. I give her two of the 3mg tablets with the evening meal, and in about an hour and a half she is sleeping. She sleeps now from about 8 p.m. to 5 a.m. It is not a sound sleep...she squirms constantly, will wake up when I move or if she hears voices, or basically any change in the room. However, it doesn't take her long to go back to sleep. The only side effect that I know of is "gastrointestinal complaint" which, according to my pharmacist, is constipation.

      Melatonin is produced naturally in the body when there is a lack of light (simple version) as a natural sleep aid. The "theory" is that our kids don't produce the melatonin naturally for some reason. I prefer it over something prescription or synthetic, plus it just seems to work better. There's many parents who use melatonin, and you can find it in herbal/vitamin aisle at pharmacy or stores like wal-mart.

      Olivia never woke up crying, though. Could the crying be stomach cramps caused by the enzymes??

      Love
      Leah

      familiesofangelmansyndrome@yahoogroups.com wrote:


      There is 1 message in this issue.

      Topics in this digest:

      1. sleeping problem
      From: Cliff Nixon


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      Message: 1
      Date: Fri, 1 Apr 2005 08:41:30 -0500
      From: Cliff Nixon
      Subject: sleeping problem

      Dear All, My Julie, age 7, has not been diagnosis yet but fits almost all
      of the characteristics except seizures. Her FISH test came back negative,
      but I am making another genetic appt. this week to go to the next level.
      My question today is about sleeping. The last 3 days she has either
      gotten up before 6, not gone to bed until 11:30 or later and then wakes
      up at 3 crying. No fever, just wants to be up. The normal thrashing ,
      some biting and constant movement. The last two nights I laid down with
      her and she moved constantly every 2 minutes until suddenly she was
      still, like she had passed out from exhaustion. I gave her Tylenol before
      bed thinking it might be her teeth. I saw on the archives that someone
      give 3 mg of Melatoin before bed. IS this the route I need to go? She is
      normally a very good sleeper. The only medicine we give her is a
      digestive enzyme with meals(allergic to dairy and soy). Could it be a
      UTI? Thanks, Sleepy MOM Lynne


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    • Cliff Nixon
      Dear Leah, Thanks for the suggestions. Last night she slept(PTL!) It still took her about an hour to finally get still. The only thing different I did was to
      Message 2 of 2 , Apr 2, 2005
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        Dear Leah, Thanks for the suggestions. Last night she slept(PTL!) It
        still took her about an hour to finally get still. The only thing
        different I did was to give her a snack (PB and J) with some Valerian
        root sprinkled on it and some water. A fiend of mine said yesterday," Was
        she hungry?" I thought, well she might be. I did discover a loose front
        tooth, so maybe that's it too. It is so hard to know when they are
        nonverbal. It is constantly a guessing game about what's wrong. Olivia's
        problems sound so much worse before you discovered Melatonin. What blood
        tests did your doctors use to diagnosis Olivia? We go sometime in May for
        a return appointment to the Geneticist and I want to be prepared. Thanks,
        Lynne Nixon
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