Strep again? After neg. strep test, IVIG and antiX

[Jodine]

Hello,

 

My nephew was diagnosed with PANDAS. He came out to Chicago to receive IVIG treatment from Dr. Kovacevic. The day before he came he had a negative strep throat culture. He had the IVIG, and immediately and consistently followed the orders of antibiotics etc.

 

His symptoms began to be relieved after the IVIG but in the past week my sister (his mom) noticed that they were getting worse again. We understand that this can be considered "flipping" and is normal. However, it was a lot more than we expected so she decided to have him tested for strep.

 

The test came back POSITIVE.

 

Has this happened to anyone else? It doenst make sense. He was negative and on the antibiotics prescribed, along with all of the other vitamins etc that were prescribed. How could he have gotten it again?

[browneyesmom]

Hi Jodine, good to see you over here.

 

That positive strep test explains so much of what they've been experiencing lately.

 

Unfortunately, IVIG will not prevent our kids from getting another infection, including strep. I wish there were easier answers to this thing... this is why we need research for PANDAS so much! My own dd12 had strep for 15 months (last winter was the absolute worst of it - psychotic for hours with rages, biballism (bilateral severe Sydenham's chorea), and unresponsive periods... it was scary.

 

We did start the high dose IVIG infusions for her (she had to have several) while she still had strep. Eventually, we did eradicate the strep in early summer (it took Clindamycin for 2 weeks, followed by Rifampin for 2 more weeks... carefully monitoring liver function the entire time) and she was strep free for 3 months.... yeah, "was" ... tested positive again this morning.

 

It's a tough battle, my very best wishes to all of you... I know she has a lot on her in this situation... keep working with the PANDAS doc; sometimes, it just takes time. What does he say about this? Will he need another IVIG or will getting the strep get it? What abx did they put him on? I forgot to look at that... he was on Augmentin 1000 mg already, right?