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Weaing off Pred ~ Pls Help

KevsLoveKevsLove member
in Special Needs

My DD was diagnosed with mild Infantile Spasms in April and has been on 40mls of Prenisolone since June 15th. We've recently begun weaning her off (5mls less a week) and we're starting to notice some things that make us wonder if DD is suffering from withdrawal. We're down to 20mLs in the am and 10mLs in the evening and each night it seems as if she's wracked with pain. She arches and screams in the most horrific of ways. We've taken to giving her Tylenol at bedtime but it's still a massive fight to get her to go (and stay) asleep. She's so so tired which just makes it even harder. I still nurse her and am on Domperidone to try to keep my supply up with her demand and we can't give her milk because she has constipation issues.

Is there anything anyone can suggest to make this easier on everyone?

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Re: Weaing off Pred ~ Pls Help

  • gimmietimmiesgimmietimmies member
    40mgs is a high dose for a lo, have you spoken with your pedi about the effects the weaning is having? It's important. DS used to have the absolute worst tantrums and screaming fits when he was little and on high doses of steroids, I actually got to understand what roid rage was. The only thing that will make the taper easier is to have quiet time on your own away from lo here and there.
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  • jsugrinjsugrin member

    How long has each step down period of meds been, 1 week, multiple weeks?  Is the night time behavior new with the drop to 10mLs at night time (sounds like but I wanted to be sure)?  Was the last step 20mLs in the morning and 20 mLs at night?

    I have had to wean from Prendisone or do it with a child but I myself have weaned of pain meds a couple  of times (I have cancer) and I found I needed about twice as long in each step down phase as the Dr.'s expected.  If you went from 20mLs to 10 at night, the behaviors started within 3 days of that reduction and it's been less than a 10 days since you started the 10mLs at night protocol I would call the pedi and tell him I was bumping her back up to 20mLs at night and if that stopped the behavior I'd double the length of each protocol phase.

    Good luck, I hope she gets relief soon.

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