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  • in reply to: Room One: General Topics Discussion #7163
    J.Graham
    Participant

    In regards to Monikas last post BE VERY CAREFUL.

    My son has Malignant Hyperthermia too. He also has a genetic condition where he CANNOT have Nitrous Oxide. This condition is caused by a genetic mutation on the MTHFR gene. I have attached some info on it at the end of this post.
    This genetic mutation is quite common among autistic children.

    Also, FWIW I would skip any post narcotics after the surgery. I opted for none when my son had surgery and they got the charts mixed up and gave him 2 different narcotics (post) and it took him 6 weeks to recover from the regression they caused.

    Jen

    Anesthesia May Be Fatal In Those With Rare Disorder

    By Linda Carroll
    NEW YORK (Reuters Health) -July 2, 2003– A common form of anesthesia,
    nitrous oxide, may cause serious harm to patients with a rare metabolic
    disorder, researchers say.
    People who are born with certain mutations in the gene responsible for
    the breakdown of folate may be at risk for neurologic damage, and even
    death, if they are given nitrous oxide, according to a report published
    in The New England Journal of Medicine.
    The disorder, known as 5,10-methylenetetrahydrofolate reductase
    deficiency (MTHFR), is quite rare, according to report co-author, Dr.
    Kirk Hogan, an associate professor of anesthesiology at the University
    of Wisconsin in Madison.
    "I think there have been fewer than 50 children reported to have it,"
    Hogan said in an interview with Reuters Health. "But there is a concern
    about children with the more common mutations of this gene that are
    associated with depressed enzyme activity. Those mutations occur in up
    to 10 percent of us. The unanswered question is whether people with
    those mutations, when given nitrous oxide might experience more subtle
    injury."
    Hogan hastened to add that people who were going to have surgery — and
    who don't have MTHFR — shouldn't be overly worried if they are to
    receive nitrous oxide.
    "It's really important that kids with this disorder don't get nitrous
    oxide," he added. "For others, who have the more common mutations, I
    don't see any cause for panic. Nitrous oxide has been in use for over
    100 years. If there was a serious problem with it, I expect we would
    have seen it by now."
    Still, Hogan said, further research on the effects of nitrous oxide on
    people with the more common mutations, might explain why some people
    have delayed recovery from surgery.
    For the new study, Hogan and his colleagues re-examined data on the 1983
    death of an infant. When the baby was three months old, he underwent
    anesthesia to have a leg growth biopsied and later was anesthetized
    again to have the leg tumor removed.
    Though healthy when released from the hospital after surgery, the baby
    started having seizures and breathing problems 17 days later. He died 46
    days after surgery.
    In 1985, when Hogan first looked at the infant's anesthesiology records,
    no one knew what caused the child to suffer brain damage, which
    eventually killed him.
    "This little guy's been on my mind for 15 years," Hogan said. "Then,
    several years ago the mutations of the genes that encode for this
    disorder were found."
    And new research on the disorder pointed to a possible link between the
    baby's damaged brain and anesthesia.
    Nitrous oxide, when given to people with MTHFR, blocks the production of
    methionine. And methionine plays an important role in DNA synthesis of
    neurotransmitters and myelin, the insulating material covering nerves.
    "Methionine is important for everyone, but especially those with
    developing brains," Hogan said. "This little guy was in the first few
    weeks of life at a time when his body was busily making brain cells."
    SOURCE: The New England Journal of Medicine 2003;349:45-50.

    _____

    However, in children with developmental delay or altered
    homocysteine metabolism, methionine levels should be determined
    before using nitrous oxide-containing anesthesia, he noted.

    N Engl J Med 2003;349:5-6,45-50

    in reply to: Room One: General Topics Discussion #7237
    J.Graham
    Participant

    To Selena,

    I am so sorry to hear of how alone you feel, no one should have to go through any of this by themselves. Everyone needs support.
    Unfortunately, you chose the wrong board to come to for this as Stephen Paperman demonstrates in his post to another parent.
    This is a very restricted board and it's soul purpose is to provide information and support for Lovaas ABA. Which it does very well.
    There are alot of Yahoo support groups for Autism that are probably more in line of what you are looking for. People from all over the globe, Dr.'s, parents, grandmas that you can talk to about any topic or concern, who hold a wealth of information on Autism. Most of all it's the support, a place to talk, and a place to learn.
    If you are interested you can email me at magnolias@telus.net and I can give you a couple of great groups to start.

    take care,

    Jen

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