June 18, 2010

ACTH Course*

June 18, 2010 - Bertrand is currently in the hospital indirectly due to ACTH. He picked up RSV because his immune system was compromised due to the ACTH. Then because of the swelling (also due to ACTH but also due to the decreased GI motility from the ketogenic diet) it turned into pneumonia. Unfortunately all the symptoms were masked because of ACTH -- he can't really run fevers or produce a lot of mucus on ACTH. He may be discharged today with oxygen.

Even through all that, I love ACTH. He can now track me, is back to smiling and is working on "hi" and "bye bye" and most importantly "mama". :) Maybe he could've done that all with SoluMedrol too. Who knows?

Everyone has stressed the importance of taking the full time with the ACTH (or any steroid) course and taper, so we stuck with it in spite of high blood pressure (150/80 for a 2 year-old) and severe mood issues (I just started an anti-depressant because of this). As a 2 year-old, 35 lb., 36 in., male, this was his course:

May 01 - 0.56mL ACTHar gel twice a day (45U total)
**Continue for approx. 3 weeks.**
May 17 - EEG
May 24 - 0.56mL ACTHar gel once a day (23U total)
**Continue for approx. 2 weeks.**
June 07 - EEG
June 07 - 0.27mL ACTHar gel once a day (12U total)
**Continue for approx. 1 week.**
June 14 - 0.27mL ACTHar gel every other day
**Continue for approx. 1 week.**
June 21 or 23 - ? mg Prednisolone twice a day
**Continue for approx. 3 weeks.**
July 12 - EEG

*October 6, 2011 - I just found this incomplete, un-published post. I'm going to post it, without edits, for posterity's sake. Bertrand's July 12, 2010 EEG was normal. By January 2011, his EEG was severely abnormal again.

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