Steriods day 2

[melanie]

T.Mom.. yeh it seemed high to me but when I looked at some of the dosing used for the month long bursts it was about the same but concentrated into 5 days.

 

Also my dd is only 6 but 95th percentile for height and weight (65lbs). Our ds2 who weighs 32lbs ish, got 30 mg per day for 5 days.

 

I am just so happy with the result and no negative side effects except some bad temper that I think we will stick with that dose for future bursts should we need them...

[/quote

 

So whenever the kids get bad episodes you can do the steroids? How long does the steroids work?????

[dut]

Hi - I think how successful each burst is and how long the effects last, will vary from child to child and may even vary from episode to episode. This was our 1st steroid burst, so the jury is out still for us.

 

Before all this "steroid' was a dirty word to me in drug terms, as I think it is for most people. You hear so many bad things about them but now it's my fave drug of all time, up there with abx!!

[memom]

Hi Gayle,

 

DD17 120lbs. Prednisone 40mg once daily for 7d then 30mg for 7d then 20mg for 7d, then 10mg for 7d. Last time she did this, the high dose was 50mg split morning and night (30mgAM, 20mgPM), and tapered over 5 weeks.

 

Ellie

[melanie]

Hi Gayle,

 

DD17 120lbs. Prednisone 40mg once daily for 7d then 30mg for 7d then 20mg for 7d, then 10mg for 7d. Last time she did this, the high dose was 50mg split morning and night (30mgAM, 20mgPM), and tapered over 5 weeks.

 

Ellie

 

 

Hi gayle I sent you a pm

 

thanks for that info

 

melanie

[GatsMom]

Hi Gayle,

 

DD17 120lbs. Prednisone 40mg once daily for 7d then 30mg for 7d then 20mg for 7d, then 10mg for 7d. Last time she did this, the high dose was 50mg split morning and night (30mgAM, 20mgPM), and tapered over 5 weeks.

 

Ellie

 

Hi Ellie,

 

Thank you so much for the steroid dosing! Such a help to me. My ds16 is 150lbs but sadly, losing weight again during this exacerbation. Do you use abx as well? How does she respond to abx as compared to abx with steroids? We are on day 4 of zith 500mg for the first time in 6 years of PANDAS and seeing some very nice changes! Did she ever struggle with separation anxiety? That is still one of the primary issues of my son, despite his age, when exacerbated. I'm sorry for so many questions, but to talk to another PANDAS mom of a teen is such a blessing to me. I'd be so appreciative of any personal advice or resources designed for teens wrt PANDAS.

 

Many thanks!

Gayle

[melanie]

Hi Gayle,

 

DD17 120lbs. Prednisone 40mg once daily for 7d then 30mg for 7d then 20mg for 7d, then 10mg for 7d. Last time she did this, the high dose was 50mg split morning and night (30mgAM, 20mgPM), and tapered over 5 weeks.

 

Ellie

 

Hi Ellie,

 

Thank you so much for the steroid dosing! Such a help to me. My ds16 is 150lbs but sadly, losing weight again during this exacerbation. Do you use abx as well? How does she respond to abx as compared to abx with steroids? We are on day 4 of zith 500mg for the first time in 6 years of PANDAS and seeing some very nice changes! Did she ever struggle with separation anxiety? That is still one of the primary issues of my son, despite his age, when exacerbated. I'm sorry for so many questions, but to talk to another PANDAS mom of a teen is such a blessing to me. I'd be so appreciative of any personal advice or resources designed for teens wrt PANDAS.

 

Many thanks!

Gayle

 

 

How come so people do steroids for 5 days and some do it for 30? Why os there so many different protacols?

 

Melanie

[T_Mom]

T.Mom.. yeh it seemed high to me but when I looked at some of the dosing used for the month long bursts it was about the same but concentrated into 5 days.

 

Also my dd is only 6 but 95th percentile for height and weight (65lbs). Our ds2 who weighs 32lbs ish, got 30 mg per day for 5 days.

 

I am just so happy with the result and no negative side effects except some bad temper that I think we will stick with that dose for future bursts should we need them...

 

 

This is really interesting to me-- The dosing seems to be so different. I don't remember the Dr. K dose, but it is significantly less (as I remember) for the 5 days (based on weight.)

 

I can completely understand your sense of joy over the results. Steroids have been a life saver for our girls-- Setting them back to themselves. We did have hyper-activity and some emotional lability, but I welcomed that as a change from the severe OCD/and mild ticcing. May your good results continue!

[memom]

Because there is no standardized treatment for Pandas. Also, I believe it depends on the type of physician that is treating ie., neurologist, immunologist, psychiatrist, pediatrician etc. They seem to approach treatment with their specialty focus and relative comfort with things like med dosing.