Massive flare

[cara615]

So if you read my last post, ds has been flaring for 3 weeks now and I started him back on daily abx (he was on prof abx). Within 2 days his tics got severe. He couldn't stop nodding his head and blinking. It was constant. No time in between.

 

I remembered that I had some prednisolone in the house unused from when he had the croup. I gave him 16mgs. Over the past couple of hours all his tics are resolving. Its slow going but it keeps getting better as the hours go by.

 

What does this tell me? That it totally is inflammation?

 

I'm thinking of just going back to the abx on a profylactic basis. I feel like the daily dose set him off. I see Bradstreet on Monday. I have no idea what he is going to say.

[qannie47]

sounds like inflammation to me.

[qannie47]

That being said, abx from what I know does not cause tics...the steroid, however, can be immediate...the positive results are telling. Cara, while I know how much this disorder can drive us crazy...give things a little more time before rushing to a conclusion.

 

Best Regards,

Q

[cara615]

Do you think I should continue the daily abx? Was it a herx that made his tics go crazy?

[cara615]

Ok here is an update. I gave DS 16mgs of prednisolone on Sat and another 14mgs on Sunday. Today is Monday and his tics are the lowest I have seen them in 2 years. I won't say tic free because there is a tic here and there but I will take it. We saw Bradstreet today and he feels we can manage ds with Mobic daily to keep inflammation at bay and if tics do break through, give him another dose of the prednisolone. He is not against having to use the steroid every 2 weeks if we have to. I am hoping we can keep him under control for longer than that with the Mobic. We will see.

 

If this plan does not work, we move on to IVIG.

 

As for Lyme and co-infections, he believes that if ds had Lyme and co's the steroids would not have worked as quickly or as effectively as they have. I do still want to test for co's but we decided against taking blood today because ds is doing so well and we don't want to stress him out for any reason.