New here! Anyone have info on Augmentin and tics?

[Scrapmaxx]

Hello Everyone!

What a great forum. I've been doing research with my pediatrician for the last two years re: PANDAS, tics, auto-immune. My son was dx'd in January 2007. Usual story- school troubles, anxiety, tics, OCD behaviors. The only thing that really keeps the tics and behavior under control is Augmentin BID. I have him on fish oils, Amino Acids, Magnesium, D-3, Kirkman's Super Nu Thera mulit-vitamins, Calcium and melatonin so he can sleep at night, Mag Sulfate cream, Mindlinx, Three-Lac, and digestive enzymes.

 

Basically, his gut is a mess. The last stool report came back +3 yeast, bowel inflammation, pathogenic bacteria (even on Augmentin), and low pancreatic output (duh). I was all convinced that I needed to wean him off the Augmentin- it's been 2 years non-stop except for short trials of a week or less. Thought I had it all figured out; weaning him off slowly was going to do the trick. So last Friday (5 days ago) I dropped his dose by 1 ml both in AM and PM. Within 2 days I started noticing him blinking. Tonight he was eye rolling and blinking as he became more tired. I AM SO FRUSTRATED! (sorry).

 

Has anyone had this experience? I can't take him off the Augmentin without all kinds of tics and behavior issues starting up. What's the secret? I know that we are still trying to detox his mercury levels (very high) and I'm wondering if this is interfering or affecting the tics. His diet is so good. No wheat, dairy, or eggs. Limited sugar. Eats a lot of fruit tho'.

 

I'm looking for someone who could shed some light on the anti-biotic "addiction".

 

Thanks so much for your time,

Scrapmaxx

[Chemar]

Hi and welcome

 

does your child have a PANDAS diagnosis?

 

if so you may find most help on our PANDAS forum

http://www.latitudes.org/forums/index.php?showforum=17

 

if PANDAS, then the increased symptoms off the antibiotic seems to be what happens, which is why so many choose to use prophylactic antibiotics ...and of course the antibiotics in turn mess with the GIT so a lot of fine tuning is needed with probiotics, candida cleansing etc

 

let me know if this thread would be best moved to the PANDAS forum

[Dedee]

Hello and welcome,

 

It sounds very much like PANDAS. Has your doctor given you that diagnosis? I can understand your concern about antibiotics for long periods of time. My son has been on Amoxicillin for about 19 months now. However, I can't even consider taking him off at this point. When we initially took him off, it was very similiar to your situation. Within 48 hours he would begin with tics again. Once we started them back they would stop after one to two days of the antibiotic. So we just wait, and try to be very aggressive with probiotics, etc. Sounds like you are doing a great job with his diet. The specialist that we took our son to said that it may be that he needs the antibiotic until the late teens. Although she did say that we could attempt to take them off every couple of years, but if there was a reoccurance of symptoms to start them back without hesitation. Evidentally you have some real issues with yeast. I'm am not an expert in that field, but there are many here who deal with that as well. Maybe they can help you out. Stick around, and you will get some great information.

 

Dedee

[Worried_Dad]

Hi, Scrapmaxx:

 

My son was first diagnosed in July of 2007. When we started antibiotics, we saw a sharp reduction in tics. His illness smoldered for about a year on amoxil, but the tics remained mild. When our local docs advised us to stop the abx, things went downhill pretty fast, and within a few months he had his worst, most violent explosion of PANDAS symptoms ever.

 

The way it's been explained to us by folks like Dr. K, the antibiotics can hold the illness at bay but often don't allow a child to fully recover; they don't get back to 100% with abx alone. (That's what our son experienced, anyway.) If your son seems to do well with abx and supplements alone, that's great! We tried every dietary regimen and supplement on the market, but for our son, nothing really seemed to do the trick. And we, too, worried about the effect all the abx would have on our son's gastrointestinal system. It definitely caused problems in that area.

 

That violent symptom explosion in August made us pretty desperate. We decided the potential benefits of IVIG outweighed the risks for our son (he was completely crippled and miserable), so we went down that path. But certainly if you can avoid the risk and expense of IVIG and stabilize your son's condition with abx and diet / supplements, that's a big win.

 

We have been told by some docs that many kids seem to outgrow PANDAS after puberty, when their immune systems change in fundamental ways. How old is your son? If he's doing pretty well and isn't far from his teens, you may be on the home stretch.

 

Good luck, and welcome!

[pmoreno]

Hello and welcome,

 

It sounds very much like PANDAS. Has your doctor given you that diagnosis? I can understand your concern about antibiotics for long periods of time. My son has been on Amoxicillin for about 19 months now. However, I can't even consider taking him off at this point. When we initially took him off, it was very similiar to your situation. Within 48 hours he would begin with tics again. Once we started them back they would stop after one to two days of the antibiotic. So we just wait, and try to be very aggressive with probiotics, etc. Sounds like you are doing a great job with his diet. The specialist that we took our son to said that it may be that he needs the antibiotic until the late teens. Although she did say that we could attempt to take them off every couple of years, but if there was a reoccurance of symptoms to start them back without hesitation. Evidentally you have some real issues with yeast. I'm am not an expert in that field, but there are many here who deal with that as well. Maybe they can help you out. Stick around, and you will get some great information.

 

 

 

Dedee

 

 

What I'm not understanding is how going off the abx will suddenly bring on symptoms unless there is strep around at the exact time that the abx is stopped? Any answers out there?

[colleenrn]

Pmoreno,

In the case of my two oldest children, before they had their tonsils and adenoids removed, the antibiotics would kill enough strep to decrease their symptoms, but not fully eradicate it. The "leftover" strep would then recolonize and we would see an increase in symptoms. That lessened after the T & A.

Colleen

[Dedee]

PMORENO,

 

In response to your question on why do antibiotics work if there is not a current strep infection. I can tell you that many physicians told me that it simply would not work because my son did not culture positive for strep. My answer to them was that I do not know HOW it works, I can only tell you it DOES. My son was on and off antibiotics about four times while we were trying to establish this pattern. Again, not quite understanding how his symptoms could completely disappear so obviously within 48 hours of starting the antibiotic and come back within 48 hrs of stopping it. We kept a spread sheet and the results are so obvious. Even the teachers noticed. I am in the medical profession and realize that this does not seem logical. I only know what I live and see every day. When we took him to see Dr. Murphy, she was not at all suprised. She said they see it over and over in these kids and while it is not completely understood, they recognize it as a therapy. She said some hypothosize that it has to do with decreasing the antibodies that continue to attack the brain even after the infection is gone. My sons Anti DNase was over 3,000 at the time of our initial visit and it had been 6 months since his last strep infection, so he obviously has antibody issues. Just like so much with this illness, much can be observed and documented but not fully understood (at least not yet). That's why PANDAS research is so important. This board is a huge step in helping families struggling with a medical profession that is so often closed minded and misinformed. Thanks for all you do.

 

Dedee

[pmoreno]

PMORENO,

 

In response to your question on why do antibiotics work if there is not a current strep infection. I can tell you that many physicians told me that it simply would not work because my son did not culture positive for strep. My answer to them was that I do not know HOW it works, I can only tell you it DOES. My son was on and off antibiotics about four times while we were trying to establish this pattern. Again, not quite understanding how his symptoms could completely disappear so obviously within 48 hours of starting the antibiotic and come back within 48 hrs of stopping it. We kept a spread sheet and the results are so obvious. Even the teachers noticed. I am in the medical profession and realize that this does not seem logical. I only know what I live and see every day. When we took him to see Dr. Murphy, she was not at all suprised. She said they see it over and over in these kids and while it is not completely understood, they recognize it as a therapy. She said some hypothosize that it has to do with decreasing the antibodies that continue to attack the brain even after the infection is gone. My sons Anti DNase was over 3,000 at the time of our initial visit and it had been 6 months since his last strep infection, so he obviously has antibody issues. Just like so much with this illness, much can be observed and documented but not fully understood (at least not yet). That's why PANDAS research is so important. This board is a huge step in helping families struggling with a medical profession that is so often closed minded and misinformed. Thanks for all you do.

 

Dedee

 

Thanks, Colleen and Dedee for your helpful answers. Yes, this is an ongoing struggle of questions and answers. I just wish the mainstream docs would get serious about this and would start learning about it and that we would see some real research studies out there. Just from what I've seen on this forum and a few others, there are tons of parents with children like ours out there and we're all like sailors in a boat without a captain. We can try to support each other, but there are so many different opinions and treatments that haven't been scientifically approved yet. What can be do to be heard collectively? I know that autism is getting a lot of publicity (which well it should) and people are working on research - it seems like that should happen for us too. Pat

[worriedmom123]

Hi,

any update on your children? my ds was diagnosed a year ago and the second we lowered his augmenting, all symptoms came back within days.