NEG for strep, though tics remain

[powerofprayer]

I understand this is not a place for diagnosing but i just would like to know WWYD? A little background, since i don't post often, and you won't have to go back to find our story:

My dd7 first presented with an eyeblinking tic in 2007. I myself have had tics (motor and vocal) ALL my life. Never been medicated/treated, just dealt. Back in 07, when i first read on this forum about PANDAS, i thought, could it really JUST be strep?? Really THAT simple?? HA! i now know there is no such thing as JUST strep for these PANDAS kiddos. How naive i was. anyway i had dds ASO titer and it was normal, so we did not pursue the PANDAS angle. of course i now know that one can still be dx with PANDAS with normal titers.

Then last fall when i started reading about dr Cunninghams study, i participated and sent in BOTH our samples. To confuse me even more, MY sample came back with a CamK of 100 and dds was 175. Dr C herself simply stated this MAY mean that she has antibodies that are signaling in her brain, but that a PANDAS dx had to be clinical. so while it has always been in the back of my mind, i never really pursued it with a dr.

then at the beginning of july, i took dd in for what i thought might be pinworms. the ped. said no it was not but her anal area was definitely red and aggravated by something. i asked about strep and/or yeast? she said it could be so she did a swab of the area and then i asked if she could swab her throat as well, even though dd had NO typical strep symptoms. rapid was neg. but the 48 hr culture was +ive. i could NOT believe it. so we did 10 day course of Pen VK.....i believe it was 250mg/twice a day. during the course, i didn't notice any of her tics resolve so i took her for a follow up last week. in my mind, i was thinking perhaps the PenVK wasn't the right AB for her and perhaps she is a strep carrier? they called me today and the culture was NEGATIVE.

so i'm wondering, where would you go from here? I mean, is PANDAS still worth pursuing? Since the abx obviously knocked out the strep, but NOT the tics, this can't be PANDAS, can it? is there something i'm missing or haven't learned yet?

Or,should i just chalk this up to a tic disorder due to bad genes and continue looking for possible triggers?

Thanks for ANY advice you can give. This forum is a WEALTH of info and support.

[thereishope]

Hello. Which swab came back +? How soon after finishing antibiotics did you retest? Did you retest the throat and the anal area? Now, I have a question for others...if a child has anal strep, should they also be tested for strep in the gut? Did you get the rest of the family tested for strep too?

Edited August 2, 2010 by Vickie

[T_Mom]

Hi -- I am really sorry you are going through this -- Some of the BEST advice I ever got (besides DP telling me it was INFLAMMATION AND HAD TO BE TREATED!) was EAMom suggesting a full month of full-strength (as if the child had STREP) of antibiotics....You know, it made a HUGE difference and our d got slowly, and obviously BETTER.

 

In our case, an initial full month of strong antibiotics made such an obvious difference, and it was so darn benign, that we have continued--(thank you Beth Maloney...for that example, of LONG term, FULL strength antibiotics.) We have done two steroid bursts along the way and that has held her very well--

 

Are there "little blips" that show up now and then --- yes, but she is not under the table, not talking, and holding spit in her mouth--thank the Lord.

 

If my child still had symptoms, and I had even a very mild glimmer of suspicion that it might be Pandas, I would not even think twice about trying it in a heartbeat (ALOT of parents on here have tried much more)--We believe antibiotics to be a very benign trial of a potentially very helpful help!

Healing takes time--but it is real when you see it happening before your eyes, week to week, slowly...

Edited August 2, 2010 by T.Mom

[Stephanie2]

a 10 day course of pen vk would not be enough to diagnose pandas, especially when the predominant symptom is tics. tics are the hardest symptom to get rid of. if you are looking for a diagnostic tool, you should get a good pandas doctor on board and do a steroid burst or taper. most likely you will see the tics remit and that will tell you that they are due to pandas (and it would also tell you that IVIG may work).

 

I understand this is not a place for diagnosing but i just would like to know WWYD? A little background, since i don't post often, and you won't have to go back to find our story:

My dd7 first presented with an eyeblinking tic in 2007. I myself have had tics (motor and vocal) ALL my life. Never been medicated/treated, just dealt. Back in 07, when i first read on this forum about PANDAS, i thought, could it really JUST be strep?? Really THAT simple?? HA! i now know there is no such thing as JUST strep for these PANDAS kiddos. How naive i was. anyway i had dds ASO titer and it was normal, so we did not pursue the PANDAS angle. of course i now know that one can still be dx with PANDAS with normal titers.

Then last fall when i started reading about dr Cunninghams study, i participated and sent in BOTH our samples. To confuse me even more, MY sample came back with a CamK of 100 and dds was 175. Dr C herself simply stated this MAY mean that she has antibodies that are signaling in her brain, but that a PANDAS dx had to be clinical. so while it has always been in the back of my mind, i never really pursued it with a dr.

then at the beginning of july, i took dd in for what i thought might be pinworms. the ped. said no it was not but her anal area was definitely red and aggravated by something. i asked about strep and/or yeast? she said it could be so she did a swab of the area and then i asked if she could swab her throat as well, even though dd had NO typical strep symptoms. rapid was neg. but the 48 hr culture was +ive. i could NOT believe it. so we did 10 day course of Pen VK.....i believe it was 250mg/twice a day. during the course, i didn't notice any of her tics resolve so i took her for a follow up last week. in my mind, i was thinking perhaps the PenVK wasn't the right AB for her and perhaps she is a strep carrier? they called me today and the culture was NEGATIVE.

so i'm wondering, where would you go from here? I mean, is PANDAS still worth pursuing? Since the abx obviously knocked out the strep, but NOT the tics, this can't be PANDAS, can it? is there something i'm missing or haven't learned yet?

Or,should i just chalk this up to a tic disorder due to bad genes and continue looking for possible triggers?

Thanks for ANY advice you can give. This forum is a WEALTH of info and support.

[peglem]

Realize too, that its the antibodies to strep that cause the problem, not the bacteria itself. The antibodies hang around for awhile, even if the infection is gone. AND, just exposure to strep, w/o an actual infection, can stimulate the immune system to produce antibodies. So, no strep does not neccessarily = no PANDAS.

[powerofprayer]

Ok....so i guess i was way off in thinking that since there was no current infection, yet tics remain meant that PANDAS is not the correct dx, right? That's what I understand Peglem saying. I gotta get my brain wrapped around all of this. so it's the ANTIBODIES that could still be running around wreaking havoc, correct?

And would a full month of full strength abx (like T. Mom suggested)take care of these antibodies?? Would I be expecting too much to see any improvement? Or should i expect that with a month long course? SInce the Pen VK took care of the infection, would it be appropriate to try the same? I am almost certain our ped will NOT do this since she admitted to me awhile back that she'd "heard" of PANDAS during her residency but has no idea on how to treat.

about the steroid burst, i really am hesitant to go that route since IF this is a tic disorder like tourettes, i've read it can make things a whole lot worse. what is a taper?

T. Mom.....what do you do now when the "little blips" do show up? Is your dd still on abx regularly? And what was her main symptoms.....tics or OCD?

@Vicki.....it was the throat swab that came back positive....not the anal area at all. So that was not retested last week, just the throat was. DDs 10 day course ended on 7/13 and we had her retested on the 30th. Should i have waited longer or brought her in sooner? And we did NOT have the rest of the family tested. I guess if one of us were to be walking around with strep, she could be reacting to that, right? Even though she may not actually get the infection?? Like what Peglem said about exposure and the immune system reacting?

So many questions.........*sigh* thanks everyone!