How do I know antibiotics are working?

[MPatti]

I am fairly new to this forum (I posted my intro previously) but will give a recap of how we got here – my 5 year old son had the MMR, chicken pox and flumist vaccines at his 5 year well visit on January 10, 2014 and the day after started exhibiting a motor tic. Shortly thereafter he started exhibiting some other symptoms but they were definitely mild (wet bed a couple of times, some weird crying bouts, restless legs). Was fortunate enough to see Dr. L almost 3 weeks after onset and diagnosed with Pandas (pediatrician ran some blood work and it showed a positive strep screen). He was put on Augmentin and given a steroid taper. Some symptoms got better (hard to tell because with the exception of the tic all symptoms were/are mild) and some no change so after 30 days on Augmentin he is now on clindamycin. Tic is just as bad as ever.

 

I have done A LOT of internet research and have spent tons of time reading this forum (such a great resource!) and understand that especially for this initial pandas episode symptoms would likely improve over time even if he wasn’t on an antibiotic. So here is my question – how do I know the antibiotic is working and it is not just a case of the symptoms improving on their own over time? If the antibiotic is not working is this the equivalent of him being untreated? I would hate to put all of these high doses of antibiotics in his body unnecessarily, but I want to do everything I can to mitigate this. Dr. L has ordered a bunch of blood work to test for co-infections and we should have those results next week.

 

Any advice would be greatly appreciated! Thanks for reading!

 

 

[3bmom]

For us when there wasn't big improvement on antibiotics, we had better gains with an anti-viral, Valcyclovir . I found it interesting that my non-PANDAS son was put on this for 5 years for multiple cold sores right after his 2 year old vaccines.

 

Hang in there you have a great Dr. Very lucky!

[jenann]

Hello Again, My DS 5 has been doing better on antibiotics (Augmentin for 11 1/2 weeks now), we had the same symptoms after the flumist. I really don't know if it was the antibiotics or not, but it's taken a LONG time. I don't know that anyone could tell me for certain that he would have gotten better without antibiotics "on his own." I've asked myself that same question. But…my mommy gut tells me otherwise. I believe he has been helped by them. FYI-His flumist was late in October 2013, and I still see a tic from time to time. My DS also had the restless leg symptom as well, and I'm seeing that at bedtime. He has missed a LOT of preschool due to separation anxiety, and is still showing some OCD. But he has improved. Maybe about 75% back to baseline. We are just starting his taper from Augmentin and will go to prophylactic PEN VK after. This frightens me. I'm worried it will all come back! I don't think this answers your question.. but I wanted to let you know that I struggle with that same concern as well and wanted to let you know our experience so far. I am also afraid he will have another exacerbation and the antibiotics won't work the next time.( I've read that that can happen.) I am also waiting on the results from the research being done on IVIG for PANDAS/PANS. Praying for us all….what a nightmare!

[MPatti]

3bmom - Thanks for the advice about anti-virals - I am going to have to ask about that. I assume there is no blood test for virals?

 

jenann - Hi! I am so glad I am not alone in the way I have been thinking! Good luck with the taper - I hope all goes well! I am waiting on the results of that research as well. It is so scary that so many of us have similar experiences after the flumist - if I only knew then what I know now . . .

[nicklemama]

My son had his initial episode two days after flumist. Let me tell you from experience, they may get better for a short temporary time, and my son did, but if you get no treatment like my son, for an entire year, you will know what it does to a child to not be treated with abx for PANDAS/PANS. Its not pretty and the consequences are a more chronic PANS that, four years later, has not fully resolved. Its been a long road to get my son to a point of doing pretty well. Its been costly in terms of dollars and in terms of lost relationships and opportunities and losses of things that little boys are supposed to experience.

[pr40]

your question is like that question about obama and economy. did he help? how can you tell? well, not getting worse should be considered a form of help. the same with abx, if your kid is not getting worse, that means that what you are doing might be helping.

if you want to test this hypothesis, stop abx for a period of time. see what happens. for us, stopping abx for ds meant almost instant exacerbation. for dd, the effects were more muted.

also, the reason that your child is taking abx is not exactly to get better but to prevent further bacterial infections. abx seem also to have some anti-inflammatory properties and as well as ability to influence glutamate regulation. and thus the question would be if abx are doing these things and not if abx is making your son better.

with conditions like this one, you can expect that your child will have better and worse periods and you want to see what will, over a longer period of time, stabilize his system. no one thing will do it.

[MPatti]

nicklemama - thank you so much for your reply. I am so sorry it has been such a long road for your son. It breaks my heart that we are all going through this and have to watch our children suffer with this.

[Mommy2MCL]

It took us 6 months to start researching PANDAS.. My daughter is not vaccine triggered but Strep /Myco. After Strep last Feb, she woke up one day in April with eye tics... We went to doctor after doctor... And no one suggested PANDAS...We even got a tourrettes diagnosis.

 

My daughter was put on antibiotics in August and October. Both times her tics lessened. I saw a correlation but couldn't figure it out. Up until August our only PANDAS symptom was the overnight onset of tics. With each flare and the incorrect antibiotic she gets worse and we have seen the OCD come out. With a combo of Zith and Augmentin she was on the way to recovery.

 

So I guess my answer is if you were to go off the antibiotic, do the symptoms worsen or come back.

 

Ours did...

[airial95]

Keep a daily log of symptoms and rate them every day. We used a 0-9 scale (0-3 being somewhat normalish, 4-6 being very difficult, 7-9 being non functional) This way you can track improvement/backslides objectively and can quantify what is working/not working. We often wondered if it was really the abx or him just growing up and maturing but when we would look at our logs it was unequivocal that he wouldn't have improved without the abx. The log also helped us identify patterns associated with new infections and exposures that have been invaluable as well.

[jenann]

Keep a daily log of symptoms and rate them every day. We used a 0-9 scale (0-3 being somewhat normalish, 4-6 being very difficult, 7-9 being non functional) This way you can track improvement/backslides objectively and can quantify what is working/not working. We often wondered if it was really the abx or him just growing up and maturing but when we would look at our logs it was unequivocal that he wouldn't have improved without the abx. The log also helped us identify patterns associated with new infections and exposures that have been invaluable as well.

airial95-Thanks- Great advice, I am starting antibiotic taper with DS5 and I like your idea of rating the symptoms. I have been keeping a daily journal since this whole thing started for us. And yes, when I look back I can see how much improvement there has been. But I've just recorded the symptoms and I use descriptives like "horrible, many tics, etc" and not used a rating scale. I will try this because when flipping through months of pages it will be easier to look at number ratings with symptoms rather than reading it all. It's also useful info. to bring to Dr. appt's. Thanks for the reminder to watch for patterns as well. Great Info.!

 

Mpatti- Yes, we went to the Dr. to get our children vaccinated to prevent them from getting sick, with the best intentions. Unfortunately, for me and my DS it backfired with the "live flumist" My DD7 had it at the same time and is fine. No PANS/PANDAS for her. How could we have known? But.. Do I wish I could turn back time and not have gotten it for him? Yes. BUT... Maybe this is a warped way of looking at this…. Could it be that possibly the storm was already brewing and having this full blown PANS exacerbation was a blessing in disguise? To be able to catch it early on in his life???I don't know?

 

nicklemama- Thanks for the post with your insight.. and I'm so sorry you, your family and your son has had to suffer so much….You are an awesome mom and thanks for helping us out with your experience and wisdom here on this forum. Praying for healing…and discoveries in research.

[airial95]

I found using a numerical scale helped keep the emotion out of it. If I had a bad day at work, or was particularly stressed or in a hurry, his compulsions/fits might seem so much more severe in the moment because of what I was feeling. But when I was forced to rate how he was overall that day - it took that factor out of it. We created an excel spreadsheet that we used to graph patterns by symptoms and daily "scores" - it made many patterns jump out at us. The main thing we noticed, was that with continued treatment, and CBT, our flares from subsequent infections were always slightly less severe than the previous one. If his "daily score" during his last flare was in the 70's, the next time around they were in the 60's, next one was 50's. So each one became more manageable. It also gave us a boost of confidence to see that what we were doing was working.