Here we go again...

[dcmom]

Well my poor pandas dd had two really great weeks. Now the separation anxiety is back, and the mornings are getting harder.

 

Two things have happened this week: we lowered her to a twice weekly dose of zithromax, and yestarday a classmate was dx with strep (there must be a carrier in the class, they have gotten strep one after another, non stop, since probably Dec.).

 

What do I do? Do I have her cultured (that is torturous for her)? Do I (on my own) up her zith dose (I have enough for a month), and explain to doc at next appt- when I plead for more? Do I ride it out, if she doesn't have strep and is just reacting to the classmate, she may improve over the weekend?

 

Or is it that she needs a higher dose for some mysterious reason (immune- modulating)?

 

Could the strep be hiding out, and the high dose of zith just kept it at bay?

 

Would a steroid burst be helpful?

 

Thanks, I thought it was under control, and now I am at a loss....

[Dedee]

I can only give an opinion. If it were me, I would increase the antibiotic back to the original dose and see what happens. If no change after 48-72 hrs, I would start giving Motrin. My son would always start to show symptoms two days (you could almost time it), after stopping antibiotics. After the third day, symptoms would be back full force. That is the only thing that leads me toward the antibiotics. Of course, all kids are different. Let us know what you decide and how things work out.

 

Dedee

[T_Mom]

If the symptoms were very worrisome and obvious than my opinion would be the same as Dedee's.

If the ripples could be "remaining learned behaviors or habits" then I would probably keep her on the preventative dose and wait it out over the weekend and see how she does...

 

We should not be afraid to call our doctors and tell them what effect the changing dosage appears to be having--(though we so often are:) but this is exactly what needs to be tracked and evidence-based experiences of parents are telling us all something...

 

Hang in there dcMom, and let us know what happens--

Best,

T.

[EAMom]

Do I have her cultured (that is torturous for her)?

We only occasionally culture our PANDAS dd...I think you would likely get a neg (could be false neg or real neg) on the abs.

 

Do I (on my own) up her zith dose (I have enough for a month), and explain to doc at next appt- when I plead for more?

That's what I would do. I wouldn't plead though...I would just call them and inform them of what is going on and what you are going to do.

 

 

Could the strep be hiding out, and the high dose of zith just kept it at bay?

In theory the high dose of Azith. should get the strep. But her immune system is reacting to the strep in the environment even if she doesn't have a true infection. I believe the immune modulating/ anti-inflammatory aspect of Azith. is really important as well.

 

Would a steroid burst be helpful?

possibly. during an exacerbation is the time to do one if you were wanting to do it.

 

Thanks, I thought it was under control, and now I am at a loss....

PANDAS is like that. Irritating isn't it?