Advice needed..

[dcmom]

Help, please.

 

In a nutshell. Daughter was in second episode of pandas. She did a steroid burst, and within 3 days was about 98% back to normal (lasted about 2 weeks). She is now tapering off of the steroids (she has a little over a week left), and is on twice weekly zithromax..

 

This past week was the first week of school. She did great for most of it. On Friday she woke up in a really bad mood (you know that kind of pandas scary bad mood- totally on the edge) She refused to go to school, was in a panic. Thankfully, I did get her there at lunch. Last night, she had some "bad thoughts", like she did during pandas episode but mild- went to sleep. Today she had one or two minor (compared to worst pandas time but totally out of normal character) temper tantrums.

 

So in other words I am seeing glimpses of pandas returning. I found out her BF went home sick from school Friday and has strep.

 

I am planning on calling Dr L in the morning, but kind of want a game plan.

 

Do I not panic and continue the path? (not likely)

 

Do I up her zithromax to daily? for how long?

 

Do I really have to get her cultured- she is on proph zith- would it show up? (very traumatic for her)

 

Do I ask for another week of steroids? Have we now negated all the improvement we made because of the exposure?

 

I am planning on sending her to school, but her other classmates could have caught it- and may not have been tested yet...

 

Thanks!

[bronxmom2]

Hi dcmom,

Personally, I would not send her to school, but I know that might not be possible for your family.

 

I would immediately switch to a treatment dose of antibiotics, and don't bother culturing.

 

I would ask to extend the steroids, I'm not sure how that would work... I guess stop the taper, hold at what she's taking, and taper a little later.

[peglem]

Hi dcmom,

Personally, I would not send her to school, but I know that might not be possible for your family.

 

I would immediately switch to a treatment dose of antibiotics, and don't bother culturing.

 

I would ask to extend the steroids, I'm not sure how that would work... I guess stop the taper, hold at what she's taking, and taper a little later.

That sounds reasonable to me...and I'd skip the strep test, too. If it comes up neg, which it probably will given the abx, it may convince somebody that you don't need to treat.

[T_Mom]

Hi DCMom,

 

I think going to full strength antibiotics is a good idea (of course I do since my d has been on them for some time now!) At least a week or so perhaps? I also am coming to the conclusion that our kids will have ups and downs even on full strength antibiotics, especially when they are exposed to various things...BUT hopefully not the full-board PANDAS/PITAND reaction that is entirely out of control...as they are on antibiotics. That has been our experience thus far.

All the best,

T

[FallingApart]

DCMom,

 

Your situation sounds exactly like what the past 48 hours have been like for us. I'm very glad you asked this question and will look forward to hearing what Dr. Latimer says tomorrow. My child is only 3 so no one thinks their child would have strep at this age still.

 

Can someone explain why the daily Zith might help our children as opposed to the twice weekly? If it is supposed to remain in their systme for 21 days after taking it, why would giving it to them daily help them? I did give DD her dose 2 days in a row in the hopes this would help, but I don't understand why.

[EAMom]

Perhaps a higher dose would have a higher immune modulating/anti-inflammatory effect. Also, possibly (??) your dd might need a higher than "normal" dose to prevent strep if her immune system isn't functioning correctly to fight off the bacteria.

 

We've noticed a difference when we've switched our dd down to 125mg/day (from 250mg/day). At 55 pounds, that should be enough to still prevent strep, so I think for her the higher dose gave us the benefit of more immune modulation (our immunologist agreed with that theory).

[thereishope]

I think it takes 3 days for strep symptoms to come up if you have contracted strep. So, what day did you find out her friend had strep. You may be able to do the math to find out how long to pull her out of school for inorder to give other classmates the chance to show symptoms.