Steroid Burst

[Packer Fan]

Sorry, we are a little new to this forum. I have read a lot about trying a steroid burst. We are awaiting insurance review on first attempt of IVIG. My DS15 been on some form of antibiotics since Sept 09 but they no longer seem effective. We are awaiting results of the Cunningham study. My son still has elevated ASO and Anti D-Nase titers and his tics and emotional lability are horrible right now. I'm so nervous about school beginning - what a way to begin high school. Could someone please describe what a steroid burst entails? We need to try something new while awaiting the IVIg. Thank you!

[Kayanne]

Sorry, we are a little new to this forum. I have read a lot about trying a steroid burst. We are awaiting insurance review on first attempt of IVIG. My DS15 been on some form of antibiotics since Sept 09 but they no longer seem effective. We are awaiting results of the Cunningham study. My son still has elevated ASO and Anti D-Nase titers and his tics and emotional lability are horrible right now. I'm so nervous about school beginning - what a way to begin high school. Could someone please describe what a steroid burst entails? We need to try something new while awaiting the IVIg. Thank you!

 

One thing you could try right away is motrin. The reports are differing on when to give...some parents say it helps after a child has started their symptoms, and others have said it is more effective if given as a preventative measure.

 

I only have experience with month-long tapering of steroids--twice. When my daughter was 42lbs, she started the first week at 10mg 2x/day, and then it would usually be cut in half for each of following weeks. When she was 48lbs, she started the first week at 15mg 2x/day.

 

Usually with the 5 day burst, you don't need to taper the dosages down. I'm not sure what the dose would be for that...perhaps someone who has done it could chime in.

 

Don't mix motrin and prednisone, they are both a little harsh on the stomach, and it can cause irritation.

[thereishope]

Taken from the PANDAS FAQ page

http://www.latitudes.org/forums/index.php?showtopic=6266

 

 

Tests: Predinsone Burst Test

 

 

Q: What is the purpose of a prednisone burst and why does it work?

A: The prednisone burst is used to temporarily slow down the immune system response by reducing inflammation (from T-cells) and reducing antibody production by B-cells. It is thought that prednisone helps close the blood-brain barrier temporarily. Essentially, abatement of symptoms in a prednisone burst helps indicate that the issue is auto-immune. It is important to know that the prednisone burst is a short term treatment (typically 5 days) and is not intended as a long term treatment. Prednisone does have significant side effects particularly for any long term use. Prednisone has no known positive effect on non-PANDAS OCD or non-PANDAS tics.

 

Q: I've heard that some doctors use a 5 day burst and others a 30 day tapered burst. Why the different protocols?

A: The 5 day burst is used by some doctors as a diagnostic technique to confirm that the symptoms are auto-immune in nature. The longer tapered burst theoretically can help break a cycle of inflammation by suppressing the creation of new antibodies while the existing ones get used up. A longer sustained suppression of symptoms does help remove placebo effect, but also has more risks due to the impact of prednisone on the rest of the immune system.

 

 

Q: How long after starting a prednisone burst should I expect a response?

A: Similar to antibiotics, most parents have reported significant immediate improvement during severe exacerbation and temporary remission of symptoms within 2 weeks post initiation of prednisone. This test seems to vary with age, symptoms and gender. Caution should be noted here that parents of children with

[norcalmom]

I think you should post a question on age and steroid burst. I think I remember dr k saying that not as effective with older kids, I know he didn't have us do one before ivig.

It's also a bit if double edged sword, steroids lower your immune response, and make you more vulnerable to infection...we tried one but only got 3 days into it before having to stop because ds caught a cold,, ultimately setting him back further.

Ds is 11.

[T_Mom]

Our one d has had an excellent reaction to steroid bursts (one 10 day, and later the second one was closer to 4 weeks including the taper.)

Edited August 21, 2010 by T.Mom

[momaine]

We have done both a 6 day burst and 20 day tapers with GREAT success for our 13 year old dd while she waited for IVIG. We also gave Advil at the same time with no problems. On the longer taper, she started with 40mg for 5 or 6 days, went to 30mg...same, then 20mg, then 10. At the time she weighed around a 100lbs. I consider it one of her miracle drugs.

[lynn2]

I first just want to say I am right there with you looking down the barrel of high school this September and wanting things to be better for my child! The biggest thing is to reduce stress as much as possible at home and let them know they are loved (to the extent that is allowed by the adolescent code, that is. )

 

We tried a month long tapered steroid burst with DS14 and had no good effect, probably because DS also caught a cold mid-burst. Advil is helpful though, and we use it for those days when things are just too much (usually after symptoms have started.)

 

IVIG this week.

[Packer Fan]

Thank you everyone for all of your help I forwarded the FAQ info. to my DS's doctor. We tried ibuprofen all day today and have already noticed a HUGE difference. It is like the clouds parted and there is a glimmer of hope. We are so relieved and will just continue on our journey...thanks again!