Really Confused

[cara615]

i think that if we can prove PANDAS she will give us 30 days of abx or until the infection clears. Then she also mentioned IVIG.

[JoyBop]

WOW!! Thats amazing! I think the proof is in the pudding! Im not sure what more the titres are going to prove though given the fact that you already found the positive strep infection. High titres certainly won't hurt, and might prove hes not a carrier, however he already had at least one negative swab in the recent past.

 

I suppose if he responds well to abx that will be the defining factor. I wish our doc would give us IV IG just like that!

[cara615]

Well, we will see. Right now its day 3 and no relief. i guess I need to give it the 10 days and retest for infection, and proceed from there. Praying we get relief. Because 1) we will KNOW its PANDAS and 2) then I can BREATHE

[JoyBop]

My kids starting seeing relief in 8 days. 10 might not be enough, especially with Amox. I would find the literature and bring it to her and push for a longer course or stronger abx.

Good luck!

[cara615]

Thanks everyone for taking the time to respond with me today. i feel very alone in this and its really nice to have some comforting words of wisdom. xo

[nicklemama]

Amoxi is not particularly effective on strep. My friend with 3 kids, no pandas, cannot clear strep in them on amoxi. Your description sounds exactly like PANDAS/PANS. Rising titers of strep does not prove PANDAS. It shows where your child is infection wise. A percentage of the population never even have titers to strep when infected. My son has never had strep titers or a positive throat culture. He has PANS rather than PANDAS. my son has been on antibiotics for 3 yrs without a break. We have addressed methylation and other things but those don't get him close to 100% functioning. In flares, the recommendation is 30 days of treatment with abx and prophylactic dosing until post college if living in a dorm type setting.

[cara615]

Ok I just messaged our PED who prescribed the amoxicillin and asked her to call in another script for a more potent abx. Let's see what she says....

[cara615]

One other thing I want to mention. With TS, starting a new school and a new grade are HUGE triggers for tics. Many kids with TS report waxing symptoms when school starts. For my son, his tics actually remained very low through the first day of school and all the way up till the 1st week in November. Again, another indicator that this this not the typical garden variety TS.

[qannie47]

This should clear things up with titers.....http://www.latitudes...?showtopic=3756

[cara615]

What a great post. Thank you! it really explains a lot of things and puts into perspective how elusive this "disorder" really can be.

 

To me, a sharp increase in tics associated with a STREP infection and then subsequent resolution in response to abx is proof enough that we are dealing with a PANDAS kid.

 

Today is day 4 on abx and slowly, very very, gradually, we are seeing improvement. Nothing drastic yet but so far its been better than yesterday. I'm forging ahead....

[nicklemama]

Slowly is typical. You are probably not going to see some overnight vast improvement.

[Hrosenkrantz]

When we first treated our son for suspected pandas last year with antibiotics, it was a month and a half of antibiotics before people started noticing the improvement..

[cara615]

Ped just called in a 10 day course of cephalexin!!! It's usually a 5 day course but she it letting me double it so we can make sure the STREP is killed. Should I switch mid course into the amoxicillin or should I do the full 10 days on amoxi? We are on day 5 today.

[nicklemama]

I'd do ten on amoxi and then ten on cephalexin. Back to back.

[cara615]

That is what I was thinking!!