Jump to content
ACN Latitudes Forums

How long should we wait before deciding if ABX are helping?


Recommended Posts

We actually did do daily treatment dose antibiotics for two years! I don't know why- fear, I guess.

 

When diagnosed with pandas, both girls (this was at different times) did a month of full strength abs. Then we added a month long steroid burst. We never removed the abs, for about 2 years. Partly for prophylactic, part for unknown, because this was our doc's protocol, etc.

 

This summer, after getting strep while on full strength abs- I decided to take them off of everything. Absolutely no change.

 

Now, back at school, the girls on on zithromax two times per week. Frankly- I don't really think they need to be, but I am too scared, it eases my mind a bit. I don't think it is realistic to prevent them from getting sick, unfortunately, we have to figure out how to deal with the aftermath when they do. Our protocol now is, zith twice per weeek. If we see an increase in symptoms we plan to do five days of daily zith and regular advil dosing- immediately. We'll see.

 

So- my suggestion to a pandas parent (if they asked) would be to do full strength antibiotics for a few months, incorporate a tapering steroid burst (month long), and if all seems well, wean off of the antibiotics as long as you don't see an increase in symptoms.

 

I have started to become concerned with "unintended consequences", and therefore try to give as little meds/ supps as possible. My girls are on daily vit d (normal child dosing, not extremely high), daily probiotics and twice per week zith. I will drop the abx over the summer.

 

Oh, and my younger daughter gets major circles under her eye during exacerbation- goes away when "healthy".

Link to comment
Share on other sites

  • 3 weeks later...

Before now, he had only ever been on a treatment course of amoxy or cephalexin. He has had times where his tics resolved or were only so slight such that anybody outside the family wouldn't even be aware of them.

 

So when you say "worsening" and "improvement" of tics, are they always there since onset, but just at better or worse levels, or do antibiotics totally get rid of them?

 

I still wonder why our pandas "specialist" didn't look for something else after a month. We switched from treatment dose of Augmentin (1 month...no improvement) to low dose zith (non treatment dose), and saw no improvement...and did that for 8 months till she got strep WHILE on the zithromax and had a worsening. I think it depends on the specialist.....for ours, she only goes for plan B if the child is debilitated. So honestly, what I recommend, is pick what treatment YOU want, then find the doctor who will do it. NOT that I am a big fan of us parents having to make those decisions. We still haven't been able to feel comfortable with that duty.

 

Since this started in 2008, has there been any improvement from antibiotics at any time, or did your child continue with symptoms?

 

Since this all started in 2008, we saw a worsening of tics and other PANDAS/PITAND symptoms the times he tested positive for strep in the office (as well as during other times of illness) and then an improvement while on the antibiotics. Amox worked the first time to clear the strep and the other 4 times we had to use cephalexin to clear up the strep throat. He's now been on the cephalexin for 3.5 weeks and it doesn't seem to be helping the tics, etc. And of course now we are on Day 9 of the clarithromycin as well.

Link to comment
Share on other sites

Hi all, just wanted to post a little update and say thanks again to all who have responded so far with information and encouragement.

 

My son has continued on the cephalexin (same treatment dose since 9/16/11) and Biaxin (aka clarithromycin; same treatment dose since 10/4/2011). We have seen the sawtooth type improvement described by some here -- some days of gradual improvement followed by setbacks and so on. The dark circles have resolved. He is still not anywhere close to tic-free however and so during our consultation with Dr T yesterday we agreed on a 5-day course of steroids (Prednisolone 15 MG/5ml; 2 tsp each morning for a 66 lb boy). We started it this morning and Dr T said that if it is going to have an effect, we should see some improvement in as little as a few days or within 2 weeks at the longest. It will be a temporary reprieve at best (2 weeks minimum to 2 months max), not a cure of course, but it will give us valuable information. If he gets better, then it is very likely that the 3 doctors who believe he has PANDAS are correct and he actually does have PANDAS/PANS and it would be time to consider trying a different antibiotic, having Dr C’s CT-PET scan done (not a treatment but only more information), possibly tonsillectomy, and possibly IVIG treatment. If he doesn’t get better, then he likely does not have PANDAS/PANS and it would be time to consider an EEG to rule out partial complex seizures as the likely first action. We just have to take it a day at a time.

 

I welcome any helpful pointers you have here -- steroids are something new to us -- on the steroids or anything else you care to share about this. Thanks.

 

 

As an aside, can I just say how wonderful it has been working with Dr T? We have found him to be accessible, very responsive to phone calls and email. Heck, half the time when I call his office, he is the person who answers the phone, even on the weekends. We are just not accustomed to such personal attention from any doctor. He's been a godsend.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...