Advice please -

[HT's Mom]

I was feeling so hopeful about helping DS with what I think was a Pandas episode - new OCD thoughts and tics after almost four years of just minor eye tics following treatment of huge, debilitating PANDAS episode four years ago. We convinced pediatrician to prescribe 30 days Augmentin, 875 mg 2x/day, for our 15 yr old son. You may remember my posting about his being a twin and his brother not seeming to be a Panda's kid (although it's possible - testing him next week).

 

Anyway, ds's symptoms just seem much worse after 25 days abx. His eye squinting and head turning are almost constant. He gets very upset if I try to discuss it with him to see how he is feeing (thoughts, etc.), and blames me for bringing it up and reminding him of the whole thing and therefore making him tic worse. Maybe the stress makes it worse but it can't explain everything, right? I'm due to talk to the doctor, but not sure what to say or ask for. Do we switch to Zithromax? He was treated with penicillin originally four years ago, and that seemed to do the trick back then. I'm not clear on why penicillin is not the abx of choice from what I've read here.

 

I'm worried that maybe it's just TS. He's always ticked, as has his brother, although bro has virtually nothing compared to this poor boy. But something must be causing the recent flareup - I thought I had pinned it to PANDAS based on a lot of what you all responded to me previously - wisdom teeth out in December, exposure to strep at the holidays. But the cultures were negative, and the ASO's were 153 and 165 respectively, two weeks apart. Does that minor rise indicate anything?

 

The TS forums indicate a lot of diet sensitivity can be the cause, but I don't think we've changed anything food wise that would explain a flare up. Some TS posters say adding fish oil made symptoms worse - and I did do that recently. Has anyone here had that experience? Should I try food eliminations? Difficult to do for active high schoolers but I would try if it would help.

 

Lastly, if anyone has the patience to explain to me what testing I'm supposed to ask for for the other potential streps that are not strep A, thank you. DH, both ds's and me going in next week.

 

Total confusion and worry here - so any advice or comments are much appreciated!

[EAMom]

The Cunningham test might be useful to you if you are trying to decide between PANDAS and non-pandas tics. Did you say where you live? Lyme and a recent strep infection can also cause an elevated Cunningham test. It would be interesting to "Cunnigham" both kids.

 

I would try Azith. (500mg per day).

 

Also, don't forget to throat culture famly members to check for carriers. DO the 72 hour culture if the rapid is neg.

 

I would also consider checking for other infections such as mycoplasma (that's a blood test) and Lyme (or other tick borne infections) depending on where you live/tick history.

 

I don't think the minor rise of ASO is too significant. Was the blood run at the same lab both times?

 

Here is an article on amxocillin failure in strep throat (amoxcillin is actually a bit stronger than pen!). http://www.entrepreneur.com/tradejournals/article/169459644.html

 

Also, with PANDAS/pitands kids, don't forget that non-strep illnessess (and also vaccines) can trigger tics/beh. changes. So, it might not necessarily be strep that is the culprit in this time around.

 

Here's a flow chart that might help:

http://www.latitudes.org/forums/index.php?showtopic=6688

Edited February 25, 2011 by EAMom

[Fixit]

I am mom of ticcers...and never disclaiming anyones thoughts, experiences or information

 

ds3 remmission

ds8 remiission 2 days ago..then ramp yesterday..wt!..tells me as falling asleep, some kid threw up next to him on the bus today..

ds10 to be 11, was at a 2 on tic scale, recently ramped to 7 upon start of lymes treatment

 

not trying to be curt..just so busy....

ds11 ish the one i always talk about...his ramp could be do to multiple abx and creation of herx, or from my past experience...after alot of abx..yeast/c.diff..

trying to get ds stable and once results come in will tell me which it is, what directon and how hard to go...

 

this will not be popular...the cunningham test should only be used as tool, indicator and guide..like other tests are used to help diagnose lupus, ms etc...

 

my ds 1st draw 105..(to me, still not normal range,so something going on, but would be classified ts) and i was disheartened, cancled appts with some respected docs...as i have eyes rolled at me for7 years prior..trying to convince someone of my ds having pandas, didn't want to post as I KNOW IN MY HEART AND ALL THE 15 ONSET WITH STREP AND REMISSION WITH ABX..IT IS NOT TS...and EAmom was one of the parents who said don't give up..it was nice to hear someone else say it!!!

 

second draw is when he was in bad shape was 160..

 

i believe it is chronic infection and the goal is to try to find out what it is and attack..some recent blood work is suggesting my ds has little or suppressed immune system....did the lacking immune system come first or did the infections come and suppress the immune system....it is a long, difficult road..

 

in the jouney you should aslo check other parts of the immune system to see if that alone is the trigger and support it where you can, because that will aid in recovery...

thyroid, vitamin levels, yeast, c.diff, crohns,..check immune complexes, sub-classes..

check for mono, myco p, etc...

 

if pen worked in past..then that may be the one your child responds to and you need to try that one again...not all children respond to the same abx....after a while some abx may stop working,...your child may be herxing..but i do not know enough about herx or your child to even guess...i am trying to figure that out for my own...

 

EAmom and so many others have great ideas and info and this is such a great resource!

Don't give up...