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Thread: Bek the liver transplant kiddo has been diagnosed with idiopathing myoclonic epilepsy

  1. #1
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    Angry Bek the liver transplant kiddo has been diagnosed with idiopathing myoclonic epilepsy

    Hello neuro buddies.

    Well the news for Bek is not good as she has now been diagnosed as having idiopathing myoclonic epilepsy (I think her mum means idopathic)

    Bek is 14 years old.

    The doctors say that the seizures have not been caused by any of the drugs that she is on (immunusuppresive ones). She has now had 2 gran mal tonic/clonic seizures and twitches, since boxing day.

    Does anyone here have any experience with this particular type of syndrome?

    Please let me know all that you know.

    Please pray for the seizures to dissappear completely.

    Bek's family are obviously quite upset.

    God bless and thank you for your prayers.

    Paul, Alison and Grant the champ.

    Grant's story in pictures and music. A must see :)
    Seeya there :)

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    I have no personal experience with idiopathic myoclonic epilepsy. I did a Google search for it. Here are some sites for information.

    Idiopathic means unknown cause. Sometimes a family history of epilepsy exists, or it can be genetic.

    While the docs have ruled out her medication as a cause, have they also ruled out any brain damage potential from being under a general anesthetic for a long time? Do the docs feel that the seizures are completely unrelated to her transplant, and they are just a coincidence occurring now following her transplant?

    This site says that seizures are fairly common following pediatric renal transplantation:

    More detailed information about seizures following kidney transplantation:

    Here's the Google Search I did for "seizures following kidney transplantation:"

    From my cursory review of these sites, it appears that seizures are not unusual after a kidney transplant. It's unfortunate if the docs didn't inform Bek and her parents of this risk. If I were having a transplant or my son or husband were, I would want to know all of the potential risks and side effects before the surgery. I would rather be prepared than surprised.

    My prayers continue for Bek's complete recovery, including an end to these seizures.

    Love & Light,

    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

  3. #3
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    I don't know anything about seizures but wanted to let you know I will be praying for Bek.

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