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3672Re: [CEREBRAL PALSY CLUB] I have been away for a few years

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  • veda jayaram
    Jul 12, 2006
      Hai Chris,

      Balaji is on Ayurvedic medicines for his seizures and his gurgur sound. He use to make lot of sound and had respiratory problems. It is not weezing, but raft breathing. With ayurvedic medicines even though his seizures have not been fully controlled, but his sound and breathing has improved. Due to lack of eating ability, he often swallows his food in to wrong pipe developing pnemonia most of the time.

      How is josh with relating to general health. Does he understand you. What other therapies he is undergoing. Are the thearpy really helping him.

      looking forwad for more talks

      Love

      Veda
      chrisb16_us <no_reply@yahoogroups.com> wrote:
      ---Hi Veda Josh has Grandmal seizures and petit mal seizures. He is
      on Topamax and clonapin for his seizures but he also has the Vagel
      nerve stimulator. He still has atleast one huge seizure aabout
      every 2 weeks and multipal peti mal's a day. Josh has very good
      head control and body control. He is unable to walk or speak, Josh
      will be 13 next month and functions at a nine month to 1 year
      level. What kind of alternative meds do you have your little one
      on?

      Chris and Josh

      In cerebralpalsyclub@yahoogroups.com, veda jayaram <veda_nj@...>
      wrote:
      >
      > Hai Chris,
      >
      > Balaji has mioclonic seizures. He has gets another type of
      seizure, the doctors do not know how to classify. He is on
      valparin, Torleva, Rivotril, Lamotec. Still we are not in a position
      to control his seizures. He is on alternative medicines also. Hope
      he becomes better. What medications are ur kid using. Does he
      still get seizures. Do he supports his neck. How is he with
      relation to talking.
      >
      > Looking forward for more conversations
      >
      > Bye
      >
      > Veda
      >
      > chrisb16_us <no_reply@yahoogroups.com> wrote:
      > ---Hi Veda thanks for the post. The one thing I can say
      I have been
      > lucky about is Josh's eating. He can eat like no bodies business
      > but, he does not gain weight. He is almost 13 and weighs right
      > around 50 pounds. What kind of seizures does your child have? I
      > look forward to talking with you.
      >
      > Chris
      >
      > In cerebralpalsyclub@yahoogroups.com, veda jayaram <veda_nj@>
      > wrote:
      > >
      > > chris,
      > > Veda here I have a Son Balaji who is diagnosed as quadraplegic
      > cp with seizures. He is 6 yrs old with little functional moments
      of
      > arms and legs. He had hell lot of problems with feeding. The docs
      > had insisted on ig tubes, but no thank god he is learnt to swallow
      > now. Ok will talk to u later. Bye
      > >
      > > Veda
      > >
      > > chrisb16_us <no_reply@yahoogroups.com> wrote:
      > > ---Staci... I think we have an awful lot in common. Yeah
      > Josh
      > > wears braces and has since he was 2. He can walk without them
      > around
      > > the house but, not anywhere else. Josh was 2 weeks overdue and
      > > huge. He got stuck in the birth canal but, the doctor insisted
      on
      > > making me continue to push for 4 hours. By the time he realized
      I
      > > wasn't going to give birth it was too late and josh's heart rate
      > was
      > > in the 40's. He had to be resusitated for 10 minutes before they
      > > brought him back. He started having seizures 12 hours after
      birth
      > > and had a brain bleed. They transfered him to Springfield NICU
      and
      > > he was there for 2 weeks. They told us Josh would not be able to
      > do
      > > anything but at 13 he sits, uses a comunication devise, walks
      with
      > > some supervision,basically he has defied all of there
      predictions.
      > > Just never give up hope Staci. I will talk to you later.
      > >
      > > Chris
      > >
      > > In cerebralpalsyclub@yahoogroups.com, staci <flygirl_82us@>
      > > wrote:
      > > >
      > > > Hi Chris,
      > > > Thanks for the compliment on Hunters name. Its the only name
      me
      > > and my husband really liked. Hunter is doing pretty good he
      > doesn't
      > > have seizures but his leg muscles are really tight. He wears
      > braces
      > > and without them he walks on his toes. The biggest thing we are
      > goin
      > > through now is getting him all the services he needs like PT. I
      am
      > > talking to a lawyer right now about possible malpractice.
      > > > Hunter was in distress before he was born and the umbilical
      > > cord was pressed against his head when he came out. I think they
      > > should of done a C-section.
      > > > the neurologist told me it happened sometime during labor and
      > > delivery.
      > > > We are heading out to see some fireworks right now so I wil
      > > ltalk more later.
      > > > Happy Fourth to you too!
      > > > Staci
      > > >
      > > > chrisb16_us <no_reply@yahoogroups.com> wrote:
      > > > ---Stacy, Josh has his moments... Today has been a good
      > > day. Josh
      > > > has alot of seizures and other problems but, he is doing
      pretty
      > > > good. He had hip reconstruction surgery in January and has a
      > long
      > > > recovery. I think it worked though. just a long road. How is
      > > > Hunter? I love that name, by the way. Josh was injured at
      birth.
      > > > The Dotor made a mistake and damaged his brain. Was Hunter
      born
      > > > with his CP or was there an accident after his birth? He has
      > made
      > > > many wonderful strides in his rough life. Have a great 4th of
      > July
      > > > Staci and I will talk to you soon.
      > > >
      > > > Chris
      > > >
      > > > In cerebralpalsyclub@yahoogroups.com, staci <flygirl_82us@>
      > > > wrote:
      > > > >
      > > > > Hey Chris,
      > > > > My son has the exact same diagnoses as yours. Hunter is
      > spastic
      > > > quad with right worse than left side and legs worse than arms.
      > Hes
      > > 3
      > > > years old. How is Josh doing now. You said he is 13?
      > > > > Staci
      > > > >
      > > > > chrisb16_us <no_reply@yahoogroups.com> wrote:
      > > > > ---Hi Erin we live about 35 miles from Decatur so pretty
      > > > much right
      > > > > smack in the middle of the state. Josh also has some
      diplegia
      > > they
      > > > > basically said he was spastic Quad with right side being
      worse
      > > and
      > > > > legs being worse than arms. Well you have a great 4th of
      July
      > > and
      > > > I
      > > > > will hopefully chat with you soon.
      > > > > In rscerebralpalsyclub@yahoogroups.com, Erin Palmer
      > <kslasmom@>
      > > > > wrote:
      > > > > >
      > > > > > Hello Christine,
      > > > > >
      > > > > > What part of IL? I live in southern IL. My daughter is 3
      > > almost
      > > > > 4. She has spastic diplegia with some involvment in her
      arms.
      > > Well
      > > > > hope to hear from you soon.
      > > > > >
      > > > > > Erin
      > > > > >
      > > > > > chrisb16_us <no_reply@yahoogroups.com> wrote:
      > > > > > Hey everyone I used to be on here everyday and I have
      > > > > been away so
      > > > > > hello again. I hope all of you are good and I am looking
      > > forward
      > > > > to
      > > > > > talking to you all again. I would like to reintroduce
      myself
      > > to
      > > > > all
      > > > > > of you. My name is Christine and I am the proud parent of
      > Josh
      > > > who
      > > > > is
      > > > > > almost 13 years old and has spastic Quad cp. He is the
      light
      > > of
      > > > my
      > > > > > life and I love him dearly. He also has a severe seizure
      > > > disorder
      > > > > > that has caused us to have the vagel nerve stimulator in.
      > > > > Sometimes
      > > > > > it works and sometimes it does nothing but, he is doing
      well
      > > > right
      > > > > > now. I also have a almost 8 year old boy who is a great
      kid.
      > > We
      > > > > live
      > > > > > in Illinois and I am a stay at home mom. I can't wait to
      get
      > > to
      > > > > know
      > > > > > you all again and catch up on everyone. I will talk to you
      > all
      > > > soon
      > > > > >
      > > > > >
      > > > > >
      > > > > >
      > > > > >
      > > > > >
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