Day 5 of Steroid Burst

[1tiredmama]

Is it still possible that we will see improvement if ds's ticcing is worse on Day 5? Not alarmingly worse, but noticeable. I know Prednisone might worsen Tourettes tics, but how about PANS tics?

 

Thank you.

[bsimon3]

It is my understanding as well that steroids can make tics worse for with Tourettes. However, I would wait another week or so before deciding if the steroid is making things better or worse. I recommend journaling daily measures of symptoms if you aren't already doing that.

 

With PANDAS tics (at least in our experience) there are day to day fluctuations and what you observe today could simply be chalked up to that. My ds trended overall as improving on the steroid over the course of a week or so AFTER the 5 day burst was complete (with the usual daily ups & downs, but we kept our eye on the overall trend). The effects were not lasting however. A couple of weeks later, we started a 3 week taper, and found MUCH improvement from it. It seems that it more effectively calmed his immune system down. We've been able to maintain a state of relative calm over the last 3 months via daily antibiotics and as-needed ibuprofen (we give the ibuprofen when we sense an upswing in tics). He went from very noticeable, nearly constant ticcing to a state where it's quite likely the tics are not discernible to the casual observer. The next time we encounter an exacerbation, we wouldn't hesitate to try another 3 week taper.

 

More info than you asked for, I know - just thought I'd share in case it could help someone!

[1tiredmama]

Thank you! There is no such thing as too much information where our children are concerned. I'm grateful that you shared your experience. I see him ticcing and get scared that I made a mistake by requesting a burst. I know it can make Tourettes worse. But, I figured it was worth the risk--he's been ticcing in varying degrees for 7 years now.

 

I really hope we see some improvement in the next several days. I need a sign, something I can cling to for now, you know? Lately, I can't even sleep without dreaming about helping my son.

 

Thank you for your encouragement. I will record his current symptoms, so that I have a baseline for comparison.

[bsimon3]

For whatever it's worth, here's my 2 cents on trying the steroid: in the absence of the Cunningham or any other test for PANDAS, a trial with steroids is the only real way we have of determining if we are dealing with PANDAS/PANS or not. I see the risk as relatively low and worthwhile to gain valuable information about the causes of our child's illness. I'd love to hear about how your child does the the coming week. And I hope you get some dreamless sleep. I've been there, can totally relate!

[michelew]

Hi There. I was just wanting to f/u to see how your son is doing. My son has been so sick for over a year. We've tried abx & IVIG, but we're still dealing with severe symptoms. We're now considering trying steroids, so I'd be interested to hear if you have seen any improvements.

 

Thanks so much! Michele

[1tiredmama]

Update: Ds did a 7 day burst of 60mg of Prednisone. Today is Day 13 since the start date. By Day 8 the tics that I worried about subsided slightly. On Day 11, ds went on a blind date. Our other son and his gf doubled with them. Both boys observed no noticeable ticcing while on the date--one would expect increased ticcing under stress. And, tonight, ds is reporting a break in a particularly bothersome, persistent tic.

 

We have not seen any improvement in frightening, intrusive thoughts. He is still bothered by thoughts of the floor giving way.

 

Despite, having bipolar disorder, his mood was good throughout the burst. That was a huge concern.

 

Also, his stomach has not given him trouble (he is recovering from severe nausea that led to a 20 lb weight loss.) Could be coincidence as he had three consecutive good days prior to the burst.

 

I wish that his rheumy had not been so conservative with the Prednisone. I think 60mg is too low for a fair trial with a 185 lb teen.

 

Thank you, bsimon3, for your reassurance. I held onto that during this nerve-wracking trial. I really, really appreciate you reaching out to me.

 

Michelew, welcome to the forum! I'm sorry that your child is so ill. And, I am sorry that I didn't report back sooner. I have a dd who is having a particularly hard week--she's 11 and not able to attend school. I've been busy comforting, holding, entertaining, and teaching that kiddo. I'm fairly new here myself. These parents are one on the most intelligent groups I have ever interacted with. You will learn a lot here. I look forward to following your journey.

[bsimon3]

Thanks for the update, 1tiredmama. So glad your ds is getting some relief! I am happy to have helped by sharing our experience -- I was trying to 'pay it forward' after getting so much helpful advice and encouragement from others on this forum!