I'm worried and not sure what to do...

[kferricks]

My kid has been on Biaxin only for over a month. Given by her Pandas doc. She started with her lyme doc this past Wed. and Amox/ K Clav was added in on Friday. Unfortunately we realized the kid was in a Pandas flare late Thursday night. I have been hoping the Amox would help take care of that but have not seen improvement. I am afraid to start her on the Tindamax while she is already not in a good place. I emailed the Pandas doc and got the reply we are to follow the new docs direction. Should I call the lyme doc and ask for another type of antibiotic? or just go ahead and bite the bullet and give her the tindamax. I know the answer...just call the lyme doc. I hate being the type of person who can get intimidated, which is why I'm posting here. lol Has this ever happened to anyone else here who have a pandas/lyme diagnosis?

[laure]

My kid has been on Biaxin only for over a month. Given by her Pandas doc. She started with her lyme doc this past Wed. and Amox/ K Clav was added in on Friday. Unfortunately we realized the kid was in a Pandas flare late Thursday night. I have been hoping the Amox would help take care of that but have not seen improvement. I am afraid to start her on the Tindamax while she is already not in a good place. I emailed the Pandas doc and got the reply we are to follow the new docs direction. Should I call the lyme doc and ask for another type of antibiotic? or just go ahead and bite the bullet and give her the tindamax. I know the answer...just call the lyme doc. I hate being the type of person who can get intimidated, which is why I'm posting here. lol Has this ever happened to anyone else here who have a pandas/lyme diagnosis?

 

 

Yup, PANDAS doc won't overrule lyme doc. Which is probably as it should be. If the lyme doc doesn't get back, I wouldn't add the tindamax in until she settles down. One week won't make a big differenct.

[LNN]

My kid has been on Biaxin only for over a month. Given by her Pandas doc. She started with her lyme doc this past Wed. and Amox/ K Clav was added in on Friday. Unfortunately we realized the kid was in a Pandas flare late Thursday night. I have been hoping the Amox would help take care of that but have not seen improvement. I am afraid to start her on the Tindamax while she is already not in a good place. I emailed the Pandas doc and got the reply we are to follow the new docs direction. Should I call the lyme doc and ask for another type of antibiotic? or just go ahead and bite the bullet and give her the tindamax. I know the answer...just call the lyme doc. I hate being the type of person who can get intimidated, which is why I'm posting here. lol Has this ever happened to anyone else here who have a pandas/lyme diagnosis?

 

I had two thoughts when reading this. The first is that in my own experience, a Pandas flair looks very similar to what we now call lyme. For us, the initial 2 Pandas episodes (with confirmed rapid streps) were far more intense, came with much more severe tics, and (for DS) serious OCD (mild compared to what some of you have dealt with, but worse than we've seen since). Since the last confirmed strep in '08, I'm not sure if what we've called Pandas isn't really TBI. So your DD may or may not be in a "Pandas" flair. If it's lyme-triggered, then you may not see the symptom improvement as quickly with a new abx that you're expecting. It could stay the same or you could even see it worsen (herx). Try to observe and journal (days blur together, as you know). I would give the augmentin some time before asking for something different (2-3 weeks?)

 

Second, if I understand your post, you met with LLMD on Wed, started augmentin Fri and now are scheduled to start tindamax this coming weekend? This is much quicker than the approach we've used. We've been told to wait 2 weeks before adding a second abx, in order to see the reaction to the first one, otherwise, if there was a bad reaction and we started 2 in close proximity, we wouldn't know which once was the likely culprit. So if you're not liking what you see, you may want to ask the LLMD about delaying the tindamax until you at least have a feel for whether things are getting better or worse. Just something to consider.

[RNmom]

I agree with LLM. The most frustrating aspect of our son's Lyme treatment has been distinguishing between PANDAS flares and Herxheimer reactions. For the first few months of his Lyme treatment we were in our Lyme docs office almost weekly discussing symptoms and medication responses. It gave me the strength to "stay the course" and also helped to fine tune the treatment plan.