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ACTH.....share your experience

jptimestwojptimestwo
in Special Needs

So my little guy is on ACTH.  We are in week 3.  He is miserable.  He basically wants to be held all the time, and at that, he's still fussy--and by fussy, I mean anywhere from whining to screaming.  We are beside ourselves.  Doc is trying to work out a good sedative at the appropriate dosage, but we've yet to find it. 

Just feeling really frustrated, and looking for some light at the end of the tunnel.  Thanks!

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Re: ACTH.....share your experience

  • SaucySarieSaucySarie member

    We had a really horrible experience with it.  My DD was on it for 11 weeks total.  She was miserable.  Wanted to be held, but didn't want to move at all.  It seemed like she hurt all over and was never happy.  It was horrible, but I thought we were doing what was best.  She ended up getting REALLY sick and was admitted in the hospital after one afternoon she seemed to be breathing funny (fast, short breaths).  She ended up almost dying.  She caught several infections (from the lowered immunity) and she needed several blood transfusions.  They tried to tell me at first that it wasn't the ACTH making her that sick, but over the month she was in there they didn't have any other answers and they also weaned her off of it and she got better.  It was the worst time of my life.  She ended up being seizure free for a week (big whoop).  

    Sorry that my story is so depressing....hopefully it goes better for you.      Ayva is now on the Ketogenic Diet and it worked WONDERFULLY for her.  It's much safer and she is now seizure free (from the IS). 

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  • AB&TBAB&TB

    My DS was on ACTH for 5 weeks.  It was awful.  All he wanted to do was sleep and eat.  He fussed and whined and was just out of it the whole time.  I was so glad when we were weaning him and he started smiling again. I had missed his smile so much.  The ACTH did nothing for DS except cause him to gain 3 lbs and have high BP for a few weeks.

    I hope you get better results.

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