lowdown on steroids

[smartyjones]

what exactly is it that steroids do to curb an exacerbation? is it anti-inflammatory? is it like high-powered motrin?

thanks.

[Kiera]

It is anti-inflammatory but more "poor man's ivig" as opposed to high powered motrin. Also, high dose taper supresses the immune system (motrin can't do that) to stop the assault on the brain. Sometimes used to get through a rough patch with temporary results, however I have read here cases where it put kids into remission for quite a while! I just did a 45 day taper unfortunately with no results (however was exposed to strep in the middle of it) and am now waiting ivig.

[cab40]

This forum is very helpful!

Edited March 23, 2012 by cab40

[cab40]

ABX choices?

Edited March 23, 2012 by cab40

[dcmom]

I will just add our experience-

 

not sure what the mechanism is exactly. I think of it as immune dampening, but it surely is anti inflammatory as well. I don't think anyone could tell you exactly which mechanism is helping more, probably both help.

 

Steroids have been our lifeline. I don't know where my kids would be without them. We have done both oral and IV steroids. Our experience is that if you get the steroids started early into an exacerbation, they can end it.

 

I think steroids are underused in pandas treatment.

[cab40]

What all txs have worked for your child?

Edited March 23, 2012 by cab40

[dcmom]

Cab- you cannot know until you try. He may need steroids plus ivig (or multiple ivig) and most likely therapy. The longer you wait to treat, IMHO, the longer the road back - but two years is A LOT shorter than many on here had to wait for treatment. IMHO you need to be aggressive as you can. I look at it like I am in a war I feel we need to be constantly on guard, and react quickly and as aggressively as possible.

 

Who is your doc? Can you get IVIG? IV steroids? oral steroids? PEX?

 

If you are stuck in your area, cannot travel, I would be relentless- contact Dr after Dr and ask for help. You will find someone willing to do something....

[cab40]

thanks, all!

Edited March 23, 2012 by cab40

[LNN]

Cab - I am so sorry that you feel so alone. Have you tried a DAN doctor or integrative? How about the Univ of Az Center for Integrative Health? http://integrativemedicine.arizona.edu/

 

I would contact organizations that support patients with chronic health issues - DAN, ILADS, chronic fatigue groups. These doctors look beyond conventional wisdom and CYA protocols. Granted, this invites more room for false starts and requires more diligence on your part, but this is way too much to shoulder on your own. Maybe a less conventional path would help. You may also want to look into Dr Stephen Fry in Scottsdale

from his site:

In addition to being the Founder, Director, and Principal Investigator of our laboratory, Stephen E. Fry, M.S., M.D., is an active General Practitioner in Scottsdale. Dr. Fry first became interested in autoimmune diseases 10 years ago after seeing the debilitative effects that these diseases can have on patients. Dr. Fry's busy clinical practice, as well as his interest in analyzing the causative agents of autoimmune disease have led to the development of our lab. A large portion of Dr. Fry's patients include those who suffer from chornic fatigue, fibromyalgia, lyme disease, and other complicated autoimmune diseases. Dr. Fry is a member of I.L.A.D.S., the Arizona Biotechnology Consortium, and he holds many patents on cutting edge biotechnological and diagnostic innovations.

 

It's not Pandas specifically, but this is a guy who's very knowledgeable on how infectious agents can hijack the body.

 

Try to dig deep and not give up. No one can know what damage has been done, but even someone like Christopher Reed, after his accident, was able to defy medical prognosis and regain more movement than his doctors predicted. The human brain is capable of so many things - hope and recovery being two of those things that are often underestimated.