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Re: [Parenting Children with Moyamoya] Pre-surgery and precautions

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  • Sara
    Danette: I am actually an adult (23 years old) that was diagnosed when I was 8. I remember I was always okay in PE class. I had to wear a helmet after surgery,
    Message 1 of 3 , Mar 11, 2004
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      Danette:

      I am actually an adult (23 years old) that was diagnosed when I was
      8. I remember I was always okay in PE class. I had to wear a helmet
      after surgery, it was like my cast. I played soccer and it was no
      problem. Hyperventilation does throw me into headaches and TIA's but
      only if it is somewhat artificial, like when I laugh, or cry really
      hard.

      I hope this helps.

      Sara (Houston, TX)

      --- In parentingchildrenwithmoyamoya@yahoogroups.com,
      <dareinhart@y...> wrote:
      > Danette, we were told that my daughter needed a
      > spotter if she was going to be up on any equipment.
      > She also was not to get dehydrated or hyperventilate.
      > They wrote a plan for this at school, but I still had
      > to remind them from time to time. The reason she
      > needed a spotter was because her neurologist was
      > afraid she might fall if she had a TIA or a seizure.
      > We were also told no baths by herself although showers
      > were okay.
      >
      > As far as the headaches go, Maddie's neurologist
      > prescribed 250 mgs of diamox. It really helped when
      > she took it on a regular basis. She doesn't get
      > headaches (thank God) too often anymore so we stopped
      > the diamox. Diamox attaches oxygen molecules to the
      > blood stream which helps with flow. If your son's
      > headaches are a result of poor blood flow it might
      > work for him too.
      >
      > Denyse
      >
      > --- dmvcpa_drogers <dsrogers93@b...> wrote:
      > > I am curious...
      > > was anyone given any precautions on PE in school
      > > for the time
      > > period before surgery? Is there ANY limitations for
      > > this time
      > > period? We go to the neurologist on Monday, but I am
      > > curious if I
      > > need to be doing anything different in the mean
      > > time.
      > >
      > > Austin cried himself to sleep last night with his
      > > head hurting. I
      > > hate it when I can not make it "go away". I hope I
      > > can find out
      > > something to help him.
      > >
      > > Thanks,
      > > Danette
      > >
      > >
      >
      >
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