Guest guest Posted July 9, 2001 Report Share Posted July 9, 2001 I got this note from today (Beka's mom) they're the family from Las Vegas who go to Dr. Brown in New Mexico. Please keep Beka in your thoughts and prayers. A few weeks ago, June 26, Beka was hospitalized & diagosed with a rare siezure disorder- Infantile spasms or Wests syndrome. I her case the cause is unknown, she's healthy in everyway. 80% of the time the cause is unknown. She is on a Very nasty medication to stop her around the clock siezures right know. She's on a 8 week ACTH hormone theorapy. 5% of the time this will stop the siezures for the rest of her life... After 4 days on the hormone she was doing much better so even with the odds against us we're hoping for the best, of course. The hormone will make her gain exceive weight & make her very irritable. She has already gained 2 lbs in only a week that she's been on the hormone. Her " schedule " , well she no longer has one & she pretty much lives like a newborn. eating every 3-4 hrs & sleeping between. When she is awake she YELLS! She's not happy with the durgs, but if this 2 month theoraoy helps her it all worth it. My 6 month old has PMS, pretty much. Only time with lots of love will tell how Beka's future will turn out. There is a good chance she'll live the rest of her life with seizures. Quote Link to comment Share on other sites More sharing options...
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