Child's sleep-related seizures and other problems

    
      Re: Child's sleep-related seizures and other problems
    


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Posted by ccf neuro MD on July 20, 1997 at 19:25:56:

In Reply to: Child's sleep-related seizures and other problems posted by Tracy Fasone on June 09, 1997 at 14:22:18:

: My 3.5 year-old daughter began having generalized complex
  seizures in her sleep when she was 7.5 months. She cried
  a LOT during the night as a infant. In fact, she
  may have had more seizures that we don't even know about.
  She's been on Phenobarb, Dilantin, Tegretol, and Valproic
  acid. She is currently on the latter two.
  In the beginning, her seizures occurred about once every
  2 months. She always went into status and was hospitalized.
  Now, the status seizures are much less frequent, (about
  one per year!), however, she now has these terrible night
  "episodes". She suddenly cries in her sleep and shakes
  uncontrollably. She doesn't seem to be conscious. These
  episodes last anywhere from less than a minute to 1.5
  hours. There's nothing we can do except wait for it to
  end. A couple times we have taken her to the ER where she
  was given valium. We have also administered valium at
  home.  When she wakes in the morning she's as fine as
  ever. I should also note that these seizures - if that's
  what they are - have been occurring since she was about
  1 year old.
  At first we were told these were night terrors, even
  though we explained that they occurred several times
  per night, almost every night. Once the doctors saw
  a video tape of her, they concurred that she was seizing.
  As for her "other problems"... She has physically
  regressed 3 times in the course of one year, and she is
  developmentally delayed. She walked at 20 months. At 26
  months, her left foot began to turn in and she began
  falling. In 2 weeks time she could no longer walk at all.
  Then about 3 weeks later she began walking -
  slowly, like starting over. In another month, the
  pattern repeated itself - another few weeks of crawling
  followed by a complete recovery. This time she walked
  for 4 months before repeating the pattern. In Aug of 96
  she started falling again and didn't walk again until
  Dec of 96. In the time between Aug and Dec, there were
  a couple of weeks where she could not even sit up.
  She's been walking ever since and doing great. Although
  still delayed for her age, she can run, (although with
  an awkward gait), jump, and go up & down stairs holding
  on to a rail. Her speech has never regressed and
  continues to improve.
  In 96, we took her to Kennedy Kreiger Institute at Johns Hopkins
  where Dr. Sakkubai Naidu diagnosed her with intermittant
  dystonia. However, when Dr. Naidu saw her THIS year, she
  said that the dystonia was gone.
  My reason for posting is to see if anyone has ever heard
  of anything like this. We're desparately seeking a
  diagnosis. As you can imagine, she's been through a
  battery of tests. Also, could the seizures or the
  medication be the cause of all her other problems?
  Open to suggestions.
  Tracy Fasone
================================================================
To Terry Fasone:
I noticed your question was posted a while ago and has gone unanswered.   Indeed, your daughter