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Infantile Spasm - ACTH weaning question
by bayareamom1, Aug 30, 2007 04:46AM
My daughter has infantile spasms, a rare type of epilepsy in infants.
While weaning off the ACTH, my daughter has had 5 clusters of infantile spasms and 1 additional seizure in 4 days, a record. I called my doctor two days in a row during office hours and never got a call back. Last night was the straw that broke the camel's back. She had her 2nd cluster in one day - the first time ever.
I called the after hours service for my doctor's office, and a doctor I'm familiar with from another group called me back. He weans kids by taking them from 40 units/day to 32 units/day for a week to 24 units/day for a week to 16/units/day for a week then 8 units/day for a week.
My doctor had told us to take it from 40 to 25 for a week, then 12.5 for a week. This doc (the one on call) said "there must have been some misunderstanding" with my regular doctor (who is attending to a personal emergency out of state and can't be reached).
The doc on call told me to take her back up to 32 units for a week to see if there's an improvement and then wean her off as he would have done (then 24, then 16, then 8 ).
Doesn't taking her back up to 32 units after being on 40 units for 3 weeks and then 24 units for a week kind of defeat the purpose of how this medicine is supposed to work?
I should have just enough ACTH on hand to complete the wean that this new doctor suggests but I'm so scared I'm doing my daughter more harm than good by increasing the dosage for a week. Any thoughts anyone?
While weaning off the ACTH, my daughter has had 5 clusters of infantile spasms and 1 additional seizure in 4 days, a record. I called my doctor two days in a row during office hours and never got a call back. Last night was the straw that broke the camel's back. She had her 2nd cluster in one day - the first time ever.
I called the after hours service for my doctor's office, and a doctor I'm familiar with from another group called me back. He weans kids by taking them from 40 units/day to 32 units/day for a week to 24 units/day for a week to 16/units/day for a week then 8 units/day for a week.
My doctor had told us to take it from 40 to 25 for a week, then 12.5 for a week. This doc (the one on call) said "there must have been some misunderstanding" with my regular doctor (who is attending to a personal emergency out of state and can't be reached).
The doc on call told me to take her back up to 32 units for a week to see if there's an improvement and then wean her off as he would have done (then 24, then 16, then 8 ).
Doesn't taking her back up to 32 units after being on 40 units for 3 weeks and then 24 units for a week kind of defeat the purpose of how this medicine is supposed to work?
I should have just enough ACTH on hand to complete the wean that this new doctor suggests but I'm so scared I'm doing my daughter more harm than good by increasing the dosage for a week. Any thoughts anyone?
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