steroid bust -- for the first time, what to expect?

[pr40]

we are giving steroid taper for the first time. any advice of what to expect? should we give it in the morning or evening?

Edited December 17, 2012 by pr40

[dcmom]

hi. We usually give in the am.

 

Steroids can cause side effects, which initially can make pandas look worse, but in our experience this calms down after tapering to the lower dose. Side effects can be: larger appetite, irritibility, difficulty sleeping. Do not give ibuprofen or melatonin with steroids.

 

We have seen varying results from steroids in terms of how much is needed, or how long it takes to work- mostly depending on how long our kiddos have been symptomatic. We do usually see healing in reverse order. Sometimes, some ocd gets "stuck" and we need to do a little therapy to get rid of it.

 

When on steroids I do try to minimize strep and be more vigilant about illness exposure, diet, and sleep. Most of the time now, I will do 5 days of advil immediately following the taper, to avoid rebound inflammation (read that protocol somewhere for MS).

 

Most of the times, the steroids do the trick for us- at least until next illness or trigger. I will say, however there have been a couple times they were just sick too long, or it was too bad to be fixed with the steroid. This did not mean it wasn't pandas, but those times we moved on to a "bigger gun" like IV solumedral or pex- which both worked.

 

Good luck! How long is the taper and what dosing...

[pr40]

thanks, Dcmom, We are on a 6+4+3 taper starting with 2tsps and going down to 1/2tsp. We are doing it to see if our ds4 problems are auto-immune related. from your message, i gather that this will not be easy to tell. you seem to suggest that the success was limited -- is that the case?

[dcmom]

pr40-

 

Well that is not exactly what I meant. For my two girls steroids have been lifesavers! IMHO they are underused to manage pandas. Both of my girls have been able to maintain completely normal lives by using minimal antibiotics (only for a flare up) and a few courses of steroids (per year) for the last two years.

 

My caveat, however, is there have been times (once or twice for each I think) where a steroid burst has not been able to do the job. So- I don't think a lack of response to steroids is enough to rule out autoimmune. Both of my girls had pex (for autoimmune) after steroids would either not do the trick, or not give lasting results- and pex worked beautifully for both.

 

Also- If steroids do not work once, does not mean they will not work again.

 

Not sure of your dosing. How many mg in 2 tsp?

[Bttrfly1]

Doing some research on the message boards. What happens if you ride out a cold? Will immune system eventually right itself? Can a kid with a PANDAS get over a flare from a cold without steroids? 

[bobh]

13 hours ago, Bttrfly1 said:

Doing some research on the message boards. What happens if you ride out a cold? Will immune system eventually right itself? Can a kid with a PANDAS get over a flare from a cold without steroids? 

Certainly a kid can get over a flare from a cold without steroids - at least we have.  Prednisone didn't do anything for our child, by the way - so don't be surprised if nothing much happens.

Your first question, "Will immune system eventually right itself?" is like a trick question.  I think the right answer might be "possibly only at puberty, or an Ivig, or plasmapheresis".  In other words, these children continue on being susceptible to flares because of an autoimmune condition, but one fortunately that sometimes goes away at puberty.

[Bttrfly1]

Thank you so then how do you treat a flare? Do you wait it out?

[bobh]

Many kids respond to NSAIDs (Non-steroidal anti-inflammatoriy drugs, like ibuprofen, advil or aleve).  But it is not good to keep them on NSAIDs for a long period.

Type NSAID into the search box near the top right (when you are in this ACN latitudes forum), and you will see what people here have said about this way to help get over a flare.  You can also search on the specific type of NSAID (i.e. advil) and get more hits.

[4Nikki]

On 8/21/2017 at 7:48 PM, Bttrfly1 said:

Doing some research on the message boards. What happens if you ride out a cold? Will immune system eventually right itself? Can a kid with a PANDAS get over a flare from a cold without steroids? 

Dd had increased tics by 3 or 4x. and she developed another tic as well but after the blast taper her symptoms reduced to manageable levels. Her doctor explained the steroid treatment was for resetting her immune system. I had thought it was for reducing inflamation. 

Dd responded to advil cold an sinus, but talk care not to rely on it long term. 

I think its a good idea to know which antibodies and proteins are out of range so you pandas doc can recommend an appropriate medication for a flare. Dd's numbers were not good for benadryl because while it helped stop symptoms initially, it a blocker and cause a buildup resulting in increase in symptom intensity.  Pseudoephedrine with ibuprofen worked promote normal binding. This may not work for your flare.