Special Needs

DS is in the middle of his 72 hr video EEG

So, DH and I recently changed our neurologist and our new neuro has set up a 72 hour video EEG to see the underlying cause of DS's seizures. 

After this, DS will be on the ketogenic diet.  I've noticed that when they were administering his medication (keppra, phenobarb, and topamax), he was still having spasms.  Needless to say, I'm not optimistic. 

Will keep you abreast on updates.  I left the the hospital so I could take a hot shower and sleep in a normal bed. My brain just needs a break from answering questions from doctors and nurses.


How is everyone doing?

Re: DS is in the middle of his 72 hr video EEG

  • hey jerseycaptive!!  i love the sprinkler onesie!!  he sure is growing!!!

    you never know - this new neurologist may do wonders!! 

      did you get a new g-tube?

    Image and video hosting by TinyPic Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker BabyFetus Ticker
  • poor buddy. Hope you get your answers!!
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  • Hugs!  I know how scary those spasms are.  Also, I know how hard the long video EEGs are.  We had a 36 hour video EEG when Linc was only 2 months old, and we have a 4 day video EEG coming up at the end of April.  Yay.  I guess if it helps, then that it worth it, right?  I really hope that the ketogenic diet works for you guys.  I have heard that it works for 2/3 of children with hard to control seizures.  We may be looking at this diet sometime down the line.  Let us know how it goes.  I hope that they can find out what is causing the spams for you guys.  Hopefully that will help determine a course of treatment.


    imageimageimageimageimage 9/07 m/c baby boy @ 18wks, 4/09 m/c @ 4.5wks
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