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2046Re: [CEREBRAL PALSY CLUB] baby with CP

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  • Jenna Canfield
    Feb 1, 2005
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      Hello Britta,
      Thank you for welcoming me. I am interested in your experience because it sounds like your daughter has a lot of similarities to my son. We are suspecting that he has CVI but no one can tell us for sure yet, I am very concerned about the possibility of a g-tube or other surgeries, it just scares me so much. Does your daughter still eat orally also, and was it a painful or scary procedure when she got the fundoplication? Have you found any treatments for CVI, and can she see at all? You are right there is a lot to know, I have some books and some help from OT, and PT, and early intervention, but I don't find the doctors to be of much help- except for controlling the seizures! Thanks again and I hope to keep in touch.
      sincerely,
      Jennna

      Britta de Leyer <brittadeleyer@...> wrote:
      Hi Jenna,
      Welcome to the group, I'm sure you'll find support here. My daughter is 4 years old and also has seizures, and cortical visual impairment and is in a wheelchair. Kristen was failure to thrive and received a g-tube at the age of 6 months. That helped with her weight gain, however she continued to have severe reflux (projectile vomiting) and was always very irritable and cried ALL the time, except when I held her. We struggled with that for a long time and she did not stop crying until she got a fundoplication done at the age of 16 months. That stopped her from refluxing and the crying stopped and she became the happiest child ever. She apparently had so much pain in her esophogus because of the reflux, that was what was causing the crying. I would suggest you ask her doctor to have tests done to determine what the problem is. There are lots of things they can check. She should not have to cry all the time, it means there is somethign wrong. I was initially told that she
      could just be irritable because she is brain injured, and that's what I believed. But that was not true and her crying was for a reason. I lived in a small community and did not get the help I should have. Now I really regret not advocating more, because the surgery could have been done earlier. I know that everything is so new and there is so much information to comprehend, but hang in there and I'm sure things will get better.

      Best wishes and don't be afraid to ask questions, there is alot of good info from this group.

      Britta, mom to Kristen, 4 years old with severe spastic/athetoid CP, CVI, seizure disorder, g-tube and fundo

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