Dr. T last week

[kleek3]

Good Morning All,

 

So, we (all 4 of us ~ DH, DS4, DS5 and I) had labs drawn last week after our initial phone consult with Dr.T. The labs came back and Dr. T thinks that the Mycoplams is the cause for our flare right now. DS4 has been on Penicillin since June 2x's daily. Dr. T says that Myco wont respond to Penicillin so he switched his antibiotic to Zithromycin. DS5, DH and myself have finished meds and now DS4 will continue. The first 4 days were a nightmare. His behaviors were not easy to deal with to say the least. I was hoping for a dramatic improvement but that's not happened thus far. My questions are these:

 

~DH and I are both Strep Positive. What does this mean in relation to DS4 with the original dx being Strep along with tics, ADHD symptoms and behaviors? Could he have cleared the Strep and picked up a Myco?

 

~How do DH and myself prevent DS4 from reacting to our Strep? Or is this not a problem unless DS4 gets Strep?

 

~How soon do we expect a response in DS4 with the change of meds?

 

What Dr. T thinks is that it may be PANS vs. PANDAS? I'm POSITIVE that the onset of this adventure started on or around the dx of a Strep infection April 2012. Now with the labs reading Myco infection, does this mean he is reacting to both? We have another week on the Zythromyicin and will keep the faith. If the behaviors don't change??? Do we change meds? Thanks for your thoughts in advance!

 

KK

[EmilyK]

My son reacts to both strep and myco-p. When his brother was strep positive, we treated his brother to clear the strep and that helped. We are all being treated for myco-p. We've had a pretty quick response (days) adding Zithromycin and prednisone to the Augmentin. I would swear looking at our history and learning more about myco-p that we've had it around for a long time, longer than when the PANDAS started. I wonder if the myco-p exposure made my son reactive in a PANDAS way to the strep. It's probably one of those chicken/egg things. I know Dr. B wants us all clear of strep or myco for the sake of the one with PANDAS. How long is your course of Zythromycin? His is 30 days. Myco can be tough to clear.

[mompaisley]

Give Dr. T a call. He would want to know if things are not getting better, and he may change things.

[kleek3]

Dr. T gave us 30 days of Zith. I will reach out to him. It doesn't help that both boys are getting over a chest cold. DS4 always gets Croup with the common cold. I'm not sure if this is adding to the behavioral stuff right now.

[smartyjones]

i would definitely say let Dr. T know about the troublesome behavior with zith.

 

can't really tell you any reasons why - but we had a horrible experience with azith in the beginning. ds had high titers and a positive culture and was put on 5 days of azith. it was horrible!!! we had also seen a naturopathic doc and had seen some improvements in behaviors. with the beginning of azith -- ALL troublesome behaviors came back with a vengenance. it was terrible. i was so happy to get off those 5 days. he improved once off. likely back to the level he'd been before azith -- simply meaning not horrendous but still very troublesome. at that time, i didn't know this website, didn't know of pandas docs -- (it's actually amazing how things have come in 4 years) -- anyway -- we switched peds and new ped put him on keflex. he had 100% remission in about 3 days. at that time, we thought we were only dealing with strep.

 

when he couldn't hold remission once off abx, we went on to find multiple infecitons -- myco, lyme and viruses. my thought is that they were all straws on the camel's back with strep being the one that broke it. maybe the keflex was able to take away the strep and carefully place all the straws back - but they couldn't last.

 

i have heard azith can cause a herx reaction in lyme patients. i don't know if that is why he had such trouble with it. i think for my ds, lyme has been the least of his troubles -- it's there to add to the load, but not seeming to cause the visible troubles -- could have had it congenitally. at the time, i simply thought he had a bad reaction with azith -- which could be -- he's had rash reactions to abx before. i'll likely never have him on azith again to find out. i would think there could be another abx to try to rid the myco and see if a better reaction.

 

i say, definitely check in with Dr. T.