Is it worth it to try new antibiotic?

[mariamacko]

Hello,

 

I have posted before so I will keep this one short...Our son started on Minocycline in December because our doctor felt it was a good choice due to its anti-inflammatory properties...Our son did well the first two weeks on it....no obsessions or copralalia at all! Since then we have seen some regression. We did try Augmentin for a few days but it did not agree with his tummy at all. We put him back on Minocycline again. His titers were over 700 when we first had him tested about six weeks after the initial onset of symptoms that occurred in October. So his first set of titers were Dec....they were checked again in Feb and were 500. They were just checked again in April are are only down to 450. So this last time they only dropped 50 "points" I guess for lack of a better word. I am just wondering if we should try Zinthromycine (spelling?) now to see if it might help. Does anyone have any advice? Could he do better on another antibiotic or would it likely not make a difference with the behaviors?

 

Thanks!

Maria

[Dedee]

Yes, I would try another antibiotic. Not suprising that Augmentin caused some stomach distress. It is a really good antibiotic but some kids do have that problem. Zithromax, Biaxin, Clindamycin or possibly even Cefdiner are other choices. You should insist on something else. Minocycline would be great if you were treating Mycoplasma but I think I understand you are dealing with strep. You should try the others and if you try one for two or three weeks and don't see a change then you need to switch to a different one until you get it right. A better choice is to find a doctor who knows how to treat PANDAS. Find a specialist and make an appointment right away. I know you are trying to deal with what is going on now but this is most likely not going to be your only episode. You need someone who is going to be available to treat your son when this happens next time and the next. I don't think that someone is your current physician. A PANDAS specialist is invaluable. In my opinion, it's mandatory for successful treatment of this disease. I know it cost money and time to travel, but you are loosing time and money trying to convince this physician to treat your son correctly. The longer your son goes with incorrect treatment, the harder it is to get things back to baseline. Again, just my opinion, you need to find someone who will give you the antibiotics you need without you trying to convince them. Best of luck.

 

Dedee

[T_Anna]

We have used Clindomycin and Refampin to fight strep too (on Augmentin now with Azith and Doxcycline)

 

T.Anna

[airial95]

We have used Azith, Augmentin, Rifampin, Cipro, and cefdinir. Rifampin by far has been the best at keeping strep at bay - but it also has been the harshest on the tummy. And it has to be taken in conjunction with another antibiotic.

 

Before you swtich, however, I would try keeping a journal or daily log of symptoms. We found that we had our most "noticeable" improvement in the first two weeks of treatment, but then it seemed to level off - however, when we looked at our daily logs, we saw that we were still making very steady progress - just at a slower pace. We didn't swtich abx until we saw a pattern of recurrent strep on the abx prescribed, or ineffectiveness in the logs.

 

Remember - recovery from PANDAS is described as being "sawtooth" - meaning one step forward, two steps back...up and down. The logs were the best in helping us really see the patterns. We used an excel spreadsheet (if you want a copy - PM me an email address and I'll send it over).

 

If your local doc is willing to rx abx as needed, and willing to try different combos - I'm going to disagree with Deedee and say keep him on board. Yes, having a PANDAS expert on the team is important, we have 2. But in 3 years of dealing with this condition with 2 kids, we have found our open minded ped to be our best asset. We can get in ASAP for a strep check as needed, he's willing to write the rx for abx at the first sign of symptoms - positive culture or no, and he's much more accessible than any of the experts tend to be. Most importantly - he's willing to learn. The only way to get more docs treating this condition is if we stick with the ones who are willing to learn and treat - even if they don't know everything. Let them work with the experts you bring into your team, but our ped is our point man.

 

If your doc isn't willing to learn and isn't open minded - then by all means - get thee to an expert ASAP - don't waste time with them. But look for another local option - I can't stress how much that has helped us over the last 3 years.

[cobbiemommy]

Just to clarify-what titers are you talking about? Strep or mycoplasma?

[mariamacko]

I am referring to strep titers. ASO and AntiDN-ase....I guess I wasn't sure if a new antibiotic is worth a try since the Minocycline is keeping the titers from RISING at least...I am not sure if that means he has not been reexposed to strep since beginning the medication or that the medication is making his titers drop???? Sometimes it is so confusing! I have read in other posts that titers can drop very slowly too.