steroid burst

[Johnsmom]

Can someone please explain the whole process of how the 5 day burst works? Ds started on 10-9 and ended on 10-13. So today being November 2nd its been roughly 3 weeks or more. Saturday night he started to appear again and then we saw some good behaviors on Sunday but man his handwriting is illegible and he is having anxiety issues and is emotional.

 

thanks

 

johnsmom

[Johnsmom]

Bumping!

[Kayanne]

Bumping!

I'm sorry, but I don't have any experience with the 5 day taper. I have read, that positive results can be up to 3 weeks out of stopping it...(going by memory).

 

I would suggest you talk to the prescribing/advising doctor, and see what their take is on your son's brief improvement.

 

Good luck.

[jdude]

My son (10) was put on a steriod burst (medrol pack) starting 10/14 as his tics were really increasing. The next week his teacher e-mailed me to notify of 2 confirmed cases of strep in the class. He went on a 3 day Zithro course (his doc has him on a 1x week prophylatic). His doc said the steriod burst can take a couple weeks to start having effects. It is now two weeks after the steriod burst and starting Saturday (10/30), we noticed no ticcing. Zero, zilch, none. This is a huge turnaround from two weeks prior when he had writhing on the floor episodes along with practically non-stop tics. No OCD symptoms either...hoping this lasts!! (BTW all of this started in May, so I'm hoping that due to early intervention we can keep it from progressing).

[Worried_Dad]

We did a 5-day prednisone burst at the beginning with Dr. K. As he explained it: he uses the steroid burst mainly as a diagnostic tool; he's found that kids who respond well to the burst tend to respond well to IVIG. The idea is that the steroid burst provides immediate (but short-term) symptom relief due to its anti-inflammatory and immuno-suppressive effects. So it would in theory reduce inflammation in the basal ganglia and dampen the autoimmune attack.

 

For our PANDAS son, the 5-day burst gave us noticeable improvement within a day or two, but the improvement only lasted about 4 days before things spiraled downhill again.

Edited November 3, 2010 by Worried Dad

[Johnsmom]

We did the 5 day burst when we saw Dr k the first time as well. The first time our son took it he was not in exacerbation and I was skeptical. I was amazed at his response and it lasted for several months. We did IVIG. He responded well, not immediatley though, and he had a good clip going until he got re-exposed again.

Now being in exacerbation the prednisone is not working or maybe just worked for a day and a half or is there still hope that it will relieve him in a few days.

 

Im still wondering about the half life of the antibodies and no one has answered that yet. How does the steroid burst work? I know why Dr K uses it and I think we are headed for 2nd IViG with him.

 

Thank you for your response.

 

 

We did a 5-day prednisone burst at the beginning with Dr. K. As he explained it: he uses the steroid burst mainly as a diagnostic tool; he's found that kids who respond well to the burst tend to respond well to IVIG. The idea is that the steroid burst provides immediate (but short-term) symptom relief due to its anti-inflammatory and immuno-suppressive effects. So it would in theory reduce inflammation in the basal ganglia and dampen the autoimmune attack.

 

For our PANDAS son, the 5-day burst gave us noticeable improvement within a day or two, but the improvement only lasted about 4 days before things spiraled downhill again.

[thereishope]

When my son did a 5 days steroid burst. It was on day 4 (after 3 full doses were in him) that we started to notice an improvement. For him, it was more that the a bad downward spiral stopped. That, in itself was very good improvement. For him, it was not short lived, but it jump started recovery. He did not go back to 100% himself shortly after following the steroid, but as I said it stopped the bad spiral he was in and it seemed help lay the foundation for recovery. That was the worse exacerbation he had.

 

I think my point to this is every child and how the will respond is different. Also, for some kids, you will not see your child 100% back to themself with a steroid.