bronxmom2 Posted September 19, 2009 Report Posted September 19, 2009 Hi, we're starting my son on a month of prednisone... I am worried, though... if extreme hyperactivity, impulsivity and emotional instability are amongst our worst symptoms...will the prednisone make these worse? Anyone have experience trying prednisone with a really hyper kid?
peglem Posted September 19, 2009 Report Posted September 19, 2009 We only did 5 days, but all three of those things decreased. Today is the last day....I'm scared.
bronxmom2 Posted September 19, 2009 Author Report Posted September 19, 2009 thanks, I'll just hope for best. I mean really... hope to see the best in my son. Good luck to you. Is the steroid burst a preliminary to IVIG?
peglem Posted September 19, 2009 Report Posted September 19, 2009 Its a let's see if we can figure out what's going on and stop making antibodies to the strep and see if it changes behaviors...we'll talk more about IVIG when we go for the follow up appt. Her dr. has wanted to try IVIG for her for a long time, but can't get support from specialists to nail down an insurance acceptable reason go for it.
bronxmom2 Posted September 20, 2009 Author Report Posted September 20, 2009 Its a let's see if we can figure out what's going on and stop making antibodies to the strep and see if it changes behaviors...we'll talk more about IVIG when we go for the follow up appt. Her dr. has wanted to try IVIG for her for a long time, but can't get support from specialists to nail down an insurance acceptable reason go for it. Good luck getting the IVIG!vCould they try a longer course of prednisone?
peglem Posted September 20, 2009 Report Posted September 20, 2009 Its a let's see if we can figure out what's going on and stop making antibodies to the strep and see if it changes behaviors...we'll talk more about IVIG when we go for the follow up appt. Her dr. has wanted to try IVIG for her for a long time, but can't get support from specialists to nail down an insurance acceptable reason go for it. Good luck getting the IVIG!vCould they try a longer course of prednisone? I hope so.
T_Mom Posted September 20, 2009 Report Posted September 20, 2009 Hi, we're starting my son on a month of prednisone...I am worried, though... if extreme hyperactivity, impulsivity and emotional instability are amongst our worst symptoms...will the prednisone make these worse? Anyone have experience trying prednisone with a really hyper kid? In our case the prednisone essentially eliminated the OCD behaviors (which were severe), it helped with the mental fog, the academics cleared, personality came back, and overall health. She did have periods of being more hyper and definitely more impulsive than her usual calm and typically polite-self, but we factored that in and chalked it up to the prednisone-- and it was WELL worth it--as our daughter was back.
Guest asaxon Posted September 21, 2009 Report Posted September 21, 2009 Hi, we're starting my son on a month of prednisone...I am worried, though... if extreme hyperactivity, impulsivity and emotional instability are amongst our worst symptoms...will the prednisone make these worse? Anyone have experience trying prednisone with a really hyper kid? Our child had some unpleasant side effects from the prednisone--a nasty temper, weight gain (better pack a bigger lunch), sleep disturbances--and I personally wouldn't repeat the prednisone without careful thought. Our rhumatologist said he'd consider trying a different steroid in the future.
Kayanne Posted September 21, 2009 Report Posted September 21, 2009 Hi, we're starting my son on a month of prednisone...I am worried, though... if extreme hyperactivity, impulsivity and emotional instability are amongst our worst symptoms...will the prednisone make these worse? Anyone have experience trying prednisone with a really hyper kid? Our child had some unpleasant side effects from the prednisone--a nasty temper, weight gain (better pack a bigger lunch), sleep disturbances--and I personally wouldn't repeat the prednisone without careful thought. Our rhumatologist said he'd consider trying a different steroid in the future. asaxon, I'm curious as to the dosages that you used. How are your child's PANDAS symptoms now? I really hope all is well. Bronxmom2, My daughter's was just beginning to become very "ragey" about a week before we started the prednisone, and at first the rages did seem to get worse, but by the second or third week, she wasn't fighting us anymore...I was still having to pinch her cheeks to get her to take the first few spoonfuls of food still, but I wasn't having to pin her down to do it.
fuelforall Posted September 22, 2009 Report Posted September 22, 2009 Hi, we're starting my son on a month of prednisone...I am worried, though... if extreme hyperactivity, impulsivity and emotional instability are amongst our worst symptoms...will the prednisone make these worse? Anyone have experience trying prednisone with a really hyper kid? How's it going?
bronxmom2 Posted September 22, 2009 Author Report Posted September 22, 2009 Don't really see any difference yet. It's only the second day. No worse, though. He claims to feel "less agitated" (his words) but he may just be telling me what I want to hear.
dcmom Posted September 22, 2009 Report Posted September 22, 2009 bronxmom2- It took me about 4 days on pred before I saw a big change- hang in there....
bronxmom2 Posted September 22, 2009 Author Report Posted September 22, 2009 dc mom, are you doing the steroids now?
dcmom Posted September 22, 2009 Report Posted September 22, 2009 No, we are done. She did 2 weeks, then tapered off for two weeks. We had about 10 totally symptom free days. Then, at the end of the taper was exposed to strep- which brought everything back. But, thankfully, that was short lived (about 1 week). Now she is better than she was pre- pred- but not as good while on it. Sigh.
Guest asaxon Posted September 23, 2009 Report Posted September 23, 2009 asaxon,I'm curious as to the dosages that you used. How are your child's PANDAS symptoms now? I really hope all is well. 40 mg/day for three weeks, then 20 mg/day for 10 days, then 5 mg/day for 10 days. My daughter is doing great, thank you, starting at around the second week of the prednisone. Still some minor OCD and anxiety, but a 95% improvement from before. We cannot be entirely sure it was the prednisone that did the trick, though, since the improvement also coincided with the 10th week of SSRI treatment (they say that SSRI's can take up to 12 weeks to have an effect on OCD). But the improvement was quite dramatic, so I tend to credit the prednisone.
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