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Re: [CEREBRAL PALSY CLUB] Re: Not sleeping! Be there, done that!!!

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  • Wendy Bauer
    My son Tony had the opposite problem he liked to sleep for 22 hrs of the day up and till he was 4 years of age. He still likes to sleep alot, I think that the
    Message 1 of 12 , Jul 7, 2005
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      My son Tony had the opposite problem he liked to sleep for 22 hrs of the day up and till he was 4 years of age. He still likes to sleep alot, I think that the muscle spasms he has wears him out.
      Mom of Alex 8 almost 9, Tony 7, and Erica 3

      iamateacher48 <iamateacher48@...> wrote:
      --- In cerebralpalsyclub@yahoogroups.com, "kristibelle2004"
      <kristibelle2004@y...> wrote:
      > Has anyone had similar experiences where their child just seemed not
      > to want to sleep. My daughter Kailyn is 6mths now and sleeps only
      > about 10hours per day all spread out. The longest she goes at a time
      > is three hours usually in the morning as I am leaving from work. I
      > don't think I have had more than 4 hours sleep since my husband went
      > back to work after taking some paternity leavetime. I need to sleep-
      > Most importantely, so does she!!!! Does anyone have any suggestions.
      > Eve a couple hours a night would do both of us wonders- and it would
      > be much safer for me on the job (police officer). Thank you!
      >
      > Kristine Krishtal
      > mother to Kailyn- 6mnth old with CP and microcephaly




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    • Kristine Krishtal
      Thanks for your advice- I am going to the pediatrician tonight so hopefully she will have some answers. Kristine iamateacher48 wrote:
      Message 2 of 12 , Jul 7, 2005
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        Thanks for your advice- I am going to the pediatrician tonight so hopefully she will have some answers.

        Kristine

        iamateacher48 <iamateacher48@...> wrote:
        Kristine,
        I wish I had some magical trick to tell you how to get your child to
        sleep at night.But I don't. I totally understand how you are feeling.
        One thing that we found was that we were giving my son a bath at night
        after we had dinner. We soon realized that the bath was making him
        wake up more, not relaxing him like we hope it would. When we changed
        his bath to the late afternoon time, it was a little better. It did
        take a while before he got into a sleep pattern. Honestly, it was
        draining on everyone, but we all managed to hang in there. Finally one
        day he began sleeping without any disruptions and we all got our sleep
        at night.
        Maybe a family member can stay with her while you and your husband get
        a a couple hours of sleep. Although sleep is important for the baby,
        it is extremely important for you two to get your sleep so you can
        funtion efiiently for her. Maybe you can talk with the pediatrician or
        nuero doctor about her sleeping.
        Good luck,
        El
        (mom to 12 year old son with C.P. and two older daughters)




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      • wonda
        hi i know how your feeling. my daughter is 18 months old and didn t seem to sleep much. i just kept switching her meds to different times of day till i found
        Message 3 of 12 , Jul 20, 2005
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          hi

          i know how your feeling. my daughter is 18 months old and didn't seem to sleep much. i just kept switching her meds to different times of day till i found the correct time to give to her. for example if her phenobarbital was 2x daily and tegratol was 2x daily. i would not give together(it made her cry a lot must hurt stomach) i gave the phenobarbital at 5:00 am & 5:00 pm then the tegratol at 7:00 am & 7:00 pm. i just add to a bottle of milk or food. she used to cry a lot and we just didn't know what else to do. we didn't want them to give us anything else that made her groggy or zoned out so we tried to switch some things around. it really helped a lot. its worth trying for some decent sleep you really need it too.

          mom2brooky my precious doll 18 months, 19 lbs, cp, microcephaly, inutro-stroke, siezures, cateracts(removed), cvi? not sure.





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        • Em
          In my experience children who have cerebral palsy (especially those with a more severe disability and limited movement) don t need as much sleep as their
          Message 4 of 12 , Jul 20, 2005
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            In my experience children who have cerebral palsy (especially those
            with a more severe disability and limited movement) don't need as much
            sleep as their peers. Many only seem to sleep for up to 2hours at a
            time at night and in some cases that's about it plus a few short naps
            in their wheelchairs during the day (10-45min).
            THe meds idea is a good one - Tegretol is often given in a higher dose
            at night as it helps sleep.
            You definately want some sleep (and need it). When does your husband
            work? Is it possible for him to get up to her some nights and you
            others so you share the sleepness nights?

            Emily
            Sister/carer to Trinity (13) with congenital cytomegalovirus, severe
            CP, profound hearing loss, severe intellectual disability.
            Carer/niece to Ruth (41) who has Down Syndrome and epilepsy
            Carer to lots of children with various disabilities and medical
            problems, each with their own fantastic personality
          • Kristine Krishtal
            I was just wondering when your daughter was diagnosed- our stories sound very similar! Kristine wonda wrote: hi i know how your
            Message 5 of 12 , Jul 24, 2005
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              I was just wondering when your daughter was diagnosed- our stories sound very similar!

              Kristine

              wonda <angellbaby34@...> wrote:



              hi

              i know how your feeling. my daughter is 18 months old and didn't seem to sleep much. i just kept switching her meds to different times of day till i found the correct time to give to her. for example if her phenobarbital was 2x daily and tegratol was 2x daily. i would not give together(it made her cry a lot must hurt stomach) i gave the phenobarbital at 5:00 am & 5:00 pm then the tegratol at 7:00 am & 7:00 pm. i just add to a bottle of milk or food. she used to cry a lot and we just didn't know what else to do. we didn't want them to give us anything else that made her groggy or zoned out so we tried to switch some things around. it really helped a lot. its worth trying for some decent sleep you really need it too.

              mom2brooky my precious doll 18 months, 19 lbs, cp, microcephaly, inutro-stroke, siezures, cateracts(removed), cvi? not sure.





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            • wonda
              Hi, Brook was diagnosed with inutero stroke when she was born. At 32 weeks the drs knew she had a brain bleed or hydrocephaly but when she was born they done
              Message 6 of 12 , Jul 26, 2005
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                Hi,
                Brook was diagnosed with inutero stroke when she was born. At 32 weeks the drs knew she had a brain bleed or hydrocephaly but when she was born they done MRI and CAT SCANS and found out it was a stroke. The CP was diagnosed by the Shriners drs when I took her in for the first exam done when she was about 10 months old. She was born with the cateracts and had them removed and she wears contacts for now. She had her first siezure when she was about 4 or 5 months old then they were the staring ones. And I do have her in therapy 3x week. She is a very moody and stubborn baby but I probably would be too if it were me. We just give lots of love and alot of pushing her to do things like laying on belly (she hates), holding objects and bring to mouth, holding up head for longer periods at a time. We do more but these are some of the things we work on. She also has a senitivity issues another problem due to stroke.
                How old is your child? Does any of these issues sound familiar?
                mom2brook19months



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              • Kristine Krishtal
                Yes it does sound familiar. Unfortunately we did not know there was anything wrong with Kailyn before she was born. Everything was fine at my 32 weeks
                Message 7 of 12 , Jul 26, 2005
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                  Yes it does sound familiar. Unfortunately we did not know there was anything wrong with Kailyn before she was born. Everything was fine at my 32 weeks ultrasound and I had no problems after that. After she was born she had a problem latching, her body temp dropped and she had to be admitted to the hopsital for tests that found nothing, she wasn't gaining weight, she wasn't sleeping alot, she was extremely irratable and cried all the time, and developed reflux. She was diagnosed with CP after our PCP was worried because her head wasn't growing. A CT scan showed that she had suffered some type of HIe most likely stroke sometime after my ultrasound. She lost most of her left side and a large part of her right side according to the scan.
                  Kailyn is 6 months now and she is doing well. She loves to eat, rolls from belly to back, has great head control, still gets cranky sometimes, s and leeps less than a typically developing child. She is small for her age, especially her head but she is still gaining size in all areas. She does not have seizures right now but an EEG showed abnormal activity so we are just keeping an eye on things. She had CVI, but a vision specialist works with her once very two weeks and we have special equipment to help her eye development. Her PT comes once a week, but my husband and I do PT with her in the morning and at night. She use to hate being on her belly, but seems to enjoy it now. Kailyn is doing well, but still has trunk control issues and does not coo or smile. We go for our second round of Hyerbaric Treatments in November and hope to see some improvements.
                  I wish you daughter all the best. Write me if you ever have any questions. Check out Kailyn's site if you get a chance- http://mysite.verizon.net/vzepiuld/

                  Kristine

                  wonda <angellbaby34@...> wrote:
                  Hi,
                  Brook was diagnosed with inutero stroke when she was born. At 32 weeks the drs knew she had a brain bleed or hydrocephaly but when she was born they done MRI and CAT SCANS and found out it was a stroke. The CP was diagnosed by the Shriners drs when I took her in for the first exam done when she was about 10 months old. She was born with the cateracts and had them removed and she wears contacts for now. She had her first siezure when she was about 4 or 5 months old then they were the staring ones. And I do have her in therapy 3x week. She is a very moody and stubborn baby but I probably would be too if it were me. We just give lots of love and alot of pushing her to do things like laying on belly (she hates), holding objects and bring to mouth, holding up head for longer periods at a time. We do more but these are some of the things we work on. She also has a senitivity issues another problem due to stroke.
                  How old is your child? Does any of these issues sound familiar?
                  mom2brook19months



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