Steriod Burst Results

[NMom]

We are now on day 12 of a 28 day steriod treatment and I've seen some things get better and some things get worse. I'm not sure how to even tell which are tics and which are OCD sometimes because they are all so intertwined. So not sure if we are actually seeing improvement or just morphing of symptoms.

 

We thought we were going to do PEX in a few weeks but now our doc is saying that the lack of response (based on what I've reported) indicates that we should not try PEX. I'd really like to get off this rollercoaster ride.

 

Anyone else not see improvement with steriods?? Any thoughts on why...should we be looking harder at infection? We did have a recent lab test that showed positive for Lyme but am still looking for a doctor for that.

[Kiera]

My ds 8, is on day 14 of a 45 day steroid burst and I too am kinda scratching my head. Overall I would have to say he's worse, very sudden rages, followed by laughing and acting normally?? I have read on here that some folks had not seen improvement until after a couple of weeks so I'm holding out hope that more time will help. When he was first diagnosed over a year ago, we did a short 5 day steroid and I saw huge improvement on day 5 so I'm kinda diassapointed this time, but I'll wait and see what happens. Keep us posted with your child.

[eljomom]

Kiera-

Really curious who ordered a 45 day burst. That's the longest burst I'd heard of. Dr. L seems to normally be the longest with a month taper. Did the benefits hold much after your 5 day burst last year?

[Bill]

Anyone else not see improvement with steriods?? Any thoughts on why...should we be looking harder at infection? We did have a recent lab test that showed positive for Lyme but am still looking for a doctor for that.

 

My son did not show improvement with steroids. He did not get any worse either. He did PEX with essentially zero results. And then we learned he had lyme and bartonella....

 

I believe that steroids inhibit the immune system response so if it's only the immune response causing the problems, then inhibiting the immune system provides temporary improvement. If other 'things' are involved and it's not just an immune response, then you may not see positive results using steroids in this manner.

 

I really hate to make a recommendation because I do not have a medical background. Based on my son's experience, I would concur with the doctor. Lyme needs to be treated. Perhaps PEX is an option later.

 

bill

[Christianmom]

My ds 8, is on day 14 of a 45 day steroid burst and I too am kinda scratching my head. Overall I would have to say he's worse, very sudden rages, followed by laughing and acting normally?? I have read on here that some folks had not seen improvement until after a couple of weeks so I'm holding out hope that more time will help. When he was first diagnosed over a year ago, we did a short 5 day steroid and I saw huge improvement on day 5 so I'm kinda diassapointed this time, but I'll wait and see what happens. Keep us posted with your child.

I'm not sure I know what I'm talking about, but I thought even 10 days was long for a burst. Did you mean a 45 day taper? I think it is important to taper down if steroids are given for longer than 10 days.

[eljomom]

Maybe I don't even know what a 5 day burst is.....I thought that meant 5 days of steroids? Are steroids for pandas given in the same doses as, say, for severe poison ivy??

[NMom]

We started with a 7 day ramp up and then started tapering for 21 days. I can't say I've seen no improvement but it's not drastic. My biggest concern is the weight gain. He's put on 4 or 5 lbs in less than 2 weeks...he only weighed 53 lbs to start so that's a big weight gain for him. It's very obvious and he's noticing it a lot. His face is bloated too. Does this go away after we stop the steroids? If so, how long after stopping?

[Kiera]

Sorry guys, let me clarify. Currently my ds is on a 45 day Taper, started tapering after day 10, to finish on day 45. This has been ordered by a very forward looking pediatric neurologist in a major childrens hospital, but not one of the main PANDAS experts on the east coast or Chicago. She has ordered a complete neurological work-up (my ds has had issues since age 2, new issues every year, culminating with a PANDAS diagnosis last year) but he's never seen a neurologist. Dr's also checking the kidneys and heart for signs of strep there. The 5 day steroid dose I was refering to last year was actually ordered by his regular MD because of a nagging cough he had post chest infection (later realized it was a tic when it didn't go away). It was given for the cough (tic) but calmed his rages, irritability by 70%, I realized it was pandas, went on to find pandas Dr, started antibiotics, he progressed to 100% recovery over several months until the next flareup this year. So here we are, trying to get to the bottom of all his ailments, and treat the PANDAS more aggressively.