Steroid Advice

[michelew]

Hello Everyone. My son has been very sick for over a year. We have tried abx & IVIG, and we're still suffering with all major symptoms. We started to notice some improvements about one month ago, but unfortunately, now we seem to be in a backslide.

 

My husband and I are considering possibly trying steroids, and would be interested to hear about all of your experiences (good & bad). It just seems as though steroids would make sense, considering that we're most likely dealing with inflammation. This is why it seems somewhat surprising that these aren't prescribed more often for our PANDAS/PITAND kids. Also, when my son first started coming down with his symptoms, the doctors thought that he may have had Hoshimoto's Encephalitis (which was later ruled out based on test results) but the doctors had said that the treatment would involve high dose steroids, and that the prognosis was good with this treatment. I'm just wondering why steroids would be used for Encephalitis but not for PANDAS/PITAND/PANS?

 

Thanks for your input!

 

Michele

[amyjoy]

Hi Michele

Steroids are used in pandas/pans and help to diagnose whether or not that level of inflammation associated with pandas/pans is present. in that case, you'd see the symptoms go way down - but only for a period of time usually, they come back.

 

there are consequences to using steroids long term, it can damage the immune system (which is why for example they are used to prevent rejection of a kidney that's been transplanted, or if someone is having a huge immune response to poison oak). but we need our immune system to work in general. Plus if kids have lyme or other coinfections, we're a little afraid to use steroids because we're afraid those other infections might get a stronger hold, not sure what others think about that. High dose steroids also interfere with tissue building a bunch of other things bodies need to do to grow and be healthy, so its a fine short term thing not long term treatment for our kids.

 

Better might be to maybe take a look at some additional lab testing that could help you understand the bigger picture and anything that might be adding to the neuroinflammatory stress your DS is experiencing. There is a current post by browneyesmom where she is looking for some of that info and a number of responses on that post, maybe it will help you. there have been a number of prior posts about additional testing you can probably search for.

 

good luck

[dcmom]

Michele-

 

I can tell you there are several docs that use steroids to treat pandas. It does make sense, because like encephalitis- pandas is inflammation of the brain.

 

For my girls, steroids have been the reason they can live normal, happy lives over 90% of the time.

 

Steroids have been a long term solution for us. My kids are not on long term steroids, but take short "bursts" or very short doses of solumedral (IV steroids- high dose) when needed. We have even been able to come off of antibiotics for the most part.

 

Yes- we have concerns about using steroids- which is why we minimize their use. But I also have concern about letting autoimmunity run unchecked. For us it has been a quality of life issue. The sooner we attack a flare up with steroids, the quicker it is resolved.

 

I agree with doing a reasonable search for infections, however, I am not a huge believer that true PANDAS has chronic infection involved. I believe it is a post infectious disorder. My kids recover from illness, and frankly do not get sick more than twice a year similar to that of their "healthy" friends. When not in exacerbation- they are the picture of health and happiness. I don't know your child's story- but if this seems like the case I would suggest trying steroids.

[eljomom]

dcmom---curious about your courses with steroids. You seem to be the one person who ALWAYS posts in response to these steroid questions with an overwhelmingly positive note. I also notice that your girls are the only kids I've heard mentioned who receive steroids via IV. I know there is a gal on a facebook forum, and another person I can't recall, but just recently have seen a posting, who also went into LONG remission with IV "pulse" steroids. I am wondering if maybe your girls' positive response is due to the manner in which they are receiving the steroids, as well as the dosing. Of course, there are others here who have had positive and long-lasting results with a typical burst or taper (although the number seems slim for the LONG-lasting improvements, at least on this board), but I really am wondering more about the high dose IV steroids.

 

I was wondering if you could elaborate on the dosing your girls have received via IV vs. a steroid burst (oral) vs. steroid taper (oral)? Also, wondering if complications and side effects are minimized if given via IV......?

 

Thanks!

[michelew]

dcmom-I would like to copy eljomom's inquiry, and would also love to have any additional info regarding dosing, side effects, etc. Thanks!

[dcmom]

well eljo/ michele-

 

Let's say it started last Dec/ Jan. My kid's pandas had been pretty under control for a year for one, and a year and a half for the other thanks to pex. Then in Dec the you know what hit the fan for both of them- due to unknown cause- most likely a cold virus they had. Things got pretty bad, fast. They went from hovering around 90-95% to 30% almost overnight. We could not get in to our regular doc for a while, so I reached out to some local docs. It is my opinion that a pandas episode needs to be jumped on asap- the longer in an episode- the longer to come out, and the more likelihood of more learned behaviors- not to mention more suffering.

 

Went to an in state neuro to beg for pex. He didn't want to do it, but offered high dose solumedral instead. They both had (in hospital) 4-6 doses of 7mg/kg of solumedral. Both made a full recovery within less than a month. Unfortunately in April, both got strep!!! (first time since initial onset). We immediately did two doses of solumedral 7mg/kg for the older one- immediate recovery. We waited longer for younger one (stupid) and it took her at least a month, close to two, to recover.

 

Since then, we have been working with oral steroids. One has had one burst for 5 days, the other two bursts for five days (we are in one now). We are working to find the lowest possible dose to recover them. I think jumping on an increase immediately, helps.

 

Our current working protocol is this; Prophylactic zithromax 2x per week (one actually on no abx now), probiotics (theralac for one, probiotic pearls for the other) and vitamin D. If we see any flare up in pandas issues, I wait a day or two to be sure, then we go to 5 days of daily zith plus regular advil dosing (3-4 times per day). Most of the times this year, this has worked. If this doesn't work we move to a five day steroid burst (40 mg X 3days, 20 mg x 2 days- for my 45lb-er). Little one is on this now and I am actually thinking of reducing to 4 days as she responded to the steroids after 2 doses.

 

I know of two neuros plus an immuno in my area that treat with steroids. This is not rocket science- docs have been treating autoimmunity and inflammation with steroids for a long time. We have chosen not to do IVIG at this point, but, Dr B treats some of his patients with steroids every time they have IVIG (every 4 to 6 weeks)- my theory is why not do this sans ivig- if it works?

 

Hope this helps.

[T_Mom]

dcmom---curious about your courses with steroids. You seem to be the one person who ALWAYS posts in response to these steroid questions with an overwhelmingly positive note. I also notice that your girls are the only kids I've heard mentioned who receive steroids via IV. I know there is a gal on a facebook forum, and another person I can't recall, but just recently have seen a posting, who also went into LONG remission with IV "pulse" steroids. I am wondering if maybe your girls' positive response is due to the manner in which they are receiving the steroids, as well as the dosing. Of course, there are others here who have had positive and long-lasting results with a typical burst or taper (although the number seems slim for the LONG-lasting improvements, at least on this board), but I really am wondering more about the high dose IV steroids.

 

I was wondering if you could elaborate on the dosing your girls have received via IV vs. a steroid burst (oral) vs. steroid taper (oral)? Also, wondering if complications and side effects are minimized if given via IV......?

 

Thanks!

 

 

We have also found that steroids have made a life-changing difference for my older d., 3 times now in 4 years. Each time these brought her out of severe episodes.

 

Having said that, I will add that for my younger d they did not seem to help (twice.) Our younger d finally did have IVIG, and it had a wonderful effect. (She since has been exposed to strep and having some issues now--but nothing like before IVIG.)

 

For 4 years I have watched this forum and for some steroids have been enough, others have needed more. The important thing to me, is to not settle for the "new normal" that PANS presents. To try to help, and then try again and/or something else, if that is not enough.

[LaurenK]

Our son just had IV steroids, 3000mg/kg pulsed over 3 days. Excellent results. Stopped a severe two year flare in a week. An older member who is now no longer here had them too.

Edited March 4, 2012 by LaurenK

[michelew]

Lauren K-Could you please share with me your son's age, and size, and also what steroid was used.

 

Thanks! Michele

[coco]

I am intrigued by this, as my dds one and only complete remission lasting almost 4 months came from Iv abx and steroids. I always attributed the good stretch to abx, but perhaps not?? Also, how do you decide on the dosage, as 3000 vs 7 mgs is very different. I would think you'd want enough to hit it hard, as too little is not effective. Can those who have done this add some insight? Thank you.