Steroid Burst

[tapiash]

I would love to hear comments about how your kids reacted with the steroid burst. What should I be looking for as far as results from the burst. Does it taste bad? What different types of bursts are there. I am guessing Dr. Lin will go over that tomorrow. Does anyone know what he prescribes?

Thanks Shirley

[memom]

Hi Shirley,

 

I don't know about what Dr. Lin prescribes but can tell you that my daughter has a lot of experience with the steroid burst. During earlier childhood she sometimes needed to take it for asthma (liquid prelone, not great taste). If it is a 5 day burst, not much for side effects. The liquid doesn't taste that great. She has also taken the pills for a month on two occassions starting with high dose and tapering over the month till off by day 30. Some of the side effects include increased appetite with some facial swelling and weight gain that were temporary. He pandas symptoms improved with the first trial around day 7-10. It was pretty dramatic. In fact, they got worse on day 4 but for only 12 hours or so then improvement. As her dose decreased her symptoms returned. Some of those kids who have tics have noted an increase in symptoms for a period of time I believe.

 

Hope that helps,

 

Ellie

[momaine]

My dd takes the pill version of prednisone. Bad after taste so she chases it with something yummy. No obvious side effects for her but between 7-13 days into a burst her OCD/tics improve dramatically. Hope it is as helpful for you as it is for my dd.

 

Angela

[Mary M]

My dd12 just finished her burst on Monday. Pill form...BAD after taste. We actually let her have a pop after taking it which is a HUGE treat in our house. Last night we saw some pretty amazing positive behavior. This morning my husband and I are flat on our backs with the flu...how will she react now?

[tapiash]

My dd12 just finished her burst on Monday. Pill form...BAD after taste. We actually let her have a pop after taking it which is a HUGE treat in our house. Last night we saw some pretty amazing positive behavior. This morning my husband and I are flat on our backs with the flu...how will she react now?

 

 

I am sorry to hear you are not feeling well. I hope your daughter does not have any set backs. wow. It sounds like the burst is working for many of you. My son cannot swallow pills. I honestly think t is a Pandas thing because two years go he could swallow the pills. Now all of a sudden he is afraid to even try. I have head the liquid is horrible but I let him chase most medicine with a coke or candy. Even Zithromax is hard for my son to swallow. Is the steroid burst outcome temporary.

Thanks for the comments. I dont know what I would do without this forum. This forum has been a true Blessing for my son.

[Mary M]

I agree. I don't know how I'd make it through each day without this forum. I would say the burst was worth it even if all I ever get is last night's positive experience. When Dr. K put my dd on the burst he said "the worst side effect you will see is that she may be much better for a few weeks or a few months". He was trying to lighten the mood I'm sure...she has been in such an exacerbation for so long now that our mood is hard to lighten but last night she actually interacted with her sisters and my husband and I in such normal conversation and even laughed (she hasn't laughed in a long time). Things weren't great on the burst, day 1 was absolutely horrible...I must admit I was worried that maybe it wasn't going to work and then we'd have to find another diagnosis, yesterday seems to be the proof. Mind you, she isn't back to herself...but progress is evident.

[tapiash]

I agree. I don't know how I'd make it through each day without this forum. I would say the burst was worth it even if all I ever get is last night's positive experience. When Dr. K put my dd on the burst he said "the worst side effect you will see is that she may be much better for a few weeks or a few months". He was trying to lighten the mood I'm sure...she has been in such an exacerbation for so long now that our mood is hard to lighten but last night she actually interacted with her sisters and my husband and I in such normal conversation and even laughed (she hasn't laughed in a long time). Things weren't great on the burst, day 1 was absolutely horrible...I must admit I was worried that maybe it wasn't going to work and then we'd have to find another diagnosis, yesterday seems to be the proof. Mind you, she isn't back to herself...but progress is evident.

 

I got chills hearing about your daughters progress. I feel much better about this steroid burst now that I have heard a few testimonies. Thank you for sharing.