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Antibiotics working, but where do we go next?


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We having been on antibiotics since the middle of March and the doc plans to continue them until about the third week of May, that will be a total of about two months. Now, we have definitely see a great improvement, but I do not know what the doctor plans when we are done.

 

I have been noticing when the 10 day dose is starting to finish up, around the 7-8 day (he is taking liquid Augmentin) that he starts to get more agitated, and anxious and some of the OCD comes back and not sleeping as well. It is not as bad as before Abx, but there is a change. Then we start a new dose and he is good again. Is this because it is a liquid and may not be as affective during the course?

 

I feel I need to also have a "game plan" for when the Abx are done. The doctor seems to think that since we are out of "season" for most bugs that he should be fine. But my understanding is that the streph or bacteria is already in his system and has been there for all these months that we have seen the changes. Is this correct?

 

Plus what else can I do the help this doc understand that he may need more Abx? I know he will want to do a throat culture, but my son had one right before going on Abx and it was negative. Should I push for an ASO titer test instead? That seems to be more accurate. Even when this all started back in October the throat culture was negative but the ASO Titer was 177. What about the other test, I not sure what that one is called, something B nase?

 

I just feel that this doc is helping to an extent but that I have to present all the information in order for him to continue this treatment. He is the only doc that will prescribe Abx and if he does not then we go back to that horrible place were my son became so anxious and raged and was afraid to go anywhere. And since I have seen my child back for the last few weeks, I do not want to loose him again.

 

Any advice would be greatly appreciated.

Thanks,

Linda

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Linda,

 

I too have seen that cycle.....day 7 everything is pretty good and then Day 8, it seems to start to fall apart. For us, we switched to different antibiotic twice to have it happen with both antibiotics. Next, we went on Augmentin and there was no honeymood period.

 

It has been suggested that the Augmentin was stronger the strep that is it killing is releasing toxins that might mimic original strep infection. I also read another discussion on here where someone said doctors will sometimes pulse dose to avoid the huge toxin release/upset child.

 

I also wonder now if it took the Amox and Keflex 8 days to really start knocking down the levels of bacteria and build up enough toxins. Seems awful coicindental that they "seemed" to fail at day 8 on two antibiotics.

 

But I am confused soo.......are you saying that you are on the same antibiotic ....each time??? If so, I dont' understand while starting another 10 day course with no break would give you another honeymoon period.

 

In addition, my doc prescribed zithromax 250 mg daily for immunomodulation of pandas symptoms and I think that is definitely helping him.

Kim

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But I am confused soo.......are you saying that you are on the same antibiotic ....each time??? If so, I dont' understand while starting another 10 day course with no break would give you another honeymoon period.

 

 

In response to your comment above, we started on Keflex in March for 20 days. Around the 10-12 day we saw the biggest improvement, but then he was only on it for another 7-8 days and stopped. That was when we saw all the symptoms come back. About a week later he started on the liquid Augmentin for 40 days, refill every 10 days. That was when I started seeing the up and down changes when we came to the end of the 10 day cycle. The amount is not changing, 5ml twice a day. We still have about 20 more days and I am watching this cycle very carefully so I can explain it to the doctor. I feel I need to have as much information as possible. If I can share anyone else's experiences then maybe this doc will try more. I don't know, this is just so frustrating. Especially when I can see my child coming back, I don't want that to change again.

 

Linda

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It is my understanding, especially with the liquid forms, that as the days go on it gradually looses a bit of potency each day. This may be why it's becoming less effective. Ask your pharmacist about this. Also, my pandas Dr said the pill form of augmentin is much better if you can get your child to take it, I know it's big but it's crushable and can be put in pudding etc. Also, highly advise consult with pandas expert, in person or by phone and just cut to the chase. Wish I hadda done this 2 1/2yrs ago, but finally on the right track now!

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Probably not what you want to hear.....but you may need to find a PANDAS doctor if you think you are going to need long term antibiotics. With my first PANDAS child my pediatrician would not give me a prescription for ongoing antibiotics and my son could not tolerate being off of them. I found a PANDAS doctor to confirm his diagnosis and send a letter with a treatment plan to our pediatrician which included daily antibiotics. Haven't had trouble since. That was about seven years ago. Unfortunately, we have to travel, but it's worth it to get things stabilized. Don't back down. If you know this is what your child needs, find a doctor who knows this disease best. They understand the "antibiotic addiction". It won't last forever, but right now it's what he needs. Best of luck.

 

Dedee

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I just read on another post that maybe Zithromax may work better than Augmentin?

 

I have seen this up and down with symptoms with the Augmentin and it has now been 20 days on them.

 

Does anyone know who I can go to in Pittsburgh? I know I have asked this before, but if there is any doctor out there because the ones I have talked to say they understand PANDAS but will not treat it or go to extremes to treat it. That is what I am afraid that this doctor we are seeing now is gonna say.

 

I know some of you have said you go to NJ, NY, DC but have had to wait months to get appointments. Any advice?

 

Linda

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Linda,

What I have learned so far is that the Zithromax is better at immunomodulating PANDAS and not as good as the others (amox, augm, keflex, etc) for killing the strep. I certainly found that out when they prescribed a zpack for his strep throat and it did very little, if not NOTHING.

Kim

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I wonder if showing your doctor the IOCDF paper on PANS/PANDAS would help?

 

 

http://www.ocfoundation.org/PANDAS/

 

It seems to have modified slightly over the last week, and they say about antibiotics:

 

Antibiotics: Dr. Swedo also did research showing that using antibiotics as a prophylaxis to prevent strep successfully reduces neuropsychiatric exacerbations. Another study will start soon as a collaboration between Harvard and the University of South Florida. They will be examining a common treatment course successfully used by clinicians: using antibiotics in children with PANDAS. Early in the disease if strep is present, this is an obvious course. But no research has yet been done on why many clinicians find that a longer term course of antibiotics often seems to offer great hope to families suffering from this disease –even after the actual triggering illness is over. As such, some physicians have found the following particularly helpful for new, sudden onset cases:

 

■Use antibiotics for 3-6 weeks initially. Use of augmentin has anecdotally been found to be more effective at a relatively high dose as well as the cephalosporins (cephalexin, cefdinir) and azithromycin. Consider using probiotics but not at same time of the day; allow 2-3 hour window between. If no improvement is seen after 3-4 weeks, a physician may consider an alternate class of antibiotic treatment. If symptoms completely remit, a trial off the antibiotic may be attempted. If symptoms return, additional treatment may be warranted.

However, in many cases, a physician will see a child a several weeks after the initial onset, or in a second exacerbation. In that case, some clinicians have recommended the following:

 

■A throat culture can still be very informative at this point as well as antibody levels. Then treat with antibiotics as above while waiting for the results. If there is a marked reduction in symptoms, gradually wean. With a recurrence, antibiotics are reintroduced and continued as needed. Try to gather retrospective information, ask for detailed pediatrician records to be forwarded and nail down the exact timing of testing and labs. Since prior testing may have been limited, a trial of antibiotics appears to be low risk.

 

If the doc won't go for a longer trial of abx, even if your child reacts badly to stopping them, I agree with trying a phone consult, or making an in-person appt with another PANDAS specialist.

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Thank you for all your help.

 

I will try the phone consults. Like I just said in PM to Hugs2day, we live in Pittsburgh, PA which is known for its exceptional hospitals and people come from out of state to get medical help and I cannot find anyone to help my son with a streph infection, very sad.

 

Someone told me the other day, that if a celebrity's child had this problem, doctors would be all over it and they would be talking about it in the media. This is so true and disgusting.

 

Thanks again,

Linda

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