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Hi lboll, I am from China too, Beijing. Which city are you in? I don't have much suggestions as I am still struggling with this for my son, not yet figured out the way to go next. I put my son on antibiotic for about 70 days already, Sammy dose. I did see obvious improvement at begining, he had backslide after I tapered down his other psych meds. So you said your doctor is willing to try high dose antiboitic for your kid? I was not able to find one willing try it that way. As far as I know there is regular Augmentin but is not easy to get, there is no Augmentin XR in China. you can email me to share information.

Is Danny still ON Risperidone? My son when he was ON higher dose psych med, he would have foot twisting, waist twisting.... I am quite sure it is caused by those meds for my son. If I lower the dose, it would be much better. Now my son has real bad mouth opening, I am not sure what it is, I hope it isnot TD.

Thanks Alex. I will need to read this further to have better understand.

Thanks MomWithOCDSon

I only have Amoxicillin/Clav which is made locally and I thought it is similar to regular Augmentin. I upped the dose on my own decision. I am not able to find doctor who knows PANDAS in Beijing and no doctor here agrees with high dose antibiotic for long term. What all doctors here give me is WARNING, WARNING WARNING about antibiotic for long term, all I can do is to read this forum, learn what you had in here, sent emails to Moms/Dads here to seek helps. I don't know what I am doing is right or not, but for me my son does look like PANDAS and his ASO is high which I need to deal with it anyway. When I started seeing his improvement, wow, that was amazing improvement, never never seen that before, OK in the morning for school, yelling less, crying less, he was even voluntary to help us do housework, vacuum every rooms for us, reasonable way to ask if he could buy a Lego or transformer .... my son weighs about 170 lbs ( over weight casued by long term psych meds for his TS+OCD/self injury+mood issue) pretty tall than average. I guess 2000mg/day antibiotic is not his upper limit dose yet if dose per body weight. One thing I should mention is when I started him "Augmentin", Aripiprazole was also added by a doctor, at that time his mouth biting was real bad, we wanted to get that under control right away no matter what. I know those changes together would make things confusion. but his biting was real bad. Was aripiprazole doing right thing at that time? --- I questioned this as he had that couple years ago, no good response. Now I am thinking maybe aripiprazole+antibiotic both were doing right thing, I don't know yet. That's why I put him back on aripiprazole lower dose couple days ago, I will see what is going to happen.

Before “Augmentin”, I did try him Azithromycin ( Zithromax, made by Pfizer Licensed from PLIVA) for 38 days. Really did not see anything. After I put him on "Augmentin" for maybe 5 days, I really could tell myself at that time " it's coming, the improvement starts showing up".

Before “Augmentin”, I did try him Azithromycin ( Zithromax, made by Pfizer Licensed from PLIVA) for 38 days. Really did not see anything.

Hi, Question about Augmentin and Augmentin XR: Does Augmentin we talk here on the forum most mean Augmentin XR? Are there any kids taking regular Augmentin (not XR)? The difference I can only see between them is Clav acid ratio is different. XR contanins very low dose. Maybe it is NOT that simple between them! Ok, my question is any of you take " regular" Augmentin for long term? If so, do you see continuous improvement as Augmentin XR does? My son have been on Amoxicillin/Clav acid ( 2000mg/day -- 2000mg Amoxicillin + 285 mg clavulanate per day) for 65 days so far, we did see obvious improvement after started it for couple of days, then I started tapering other psych meds down. Now His backslide is almost to where he was. Crying in the morning for school, wakes up with irritable mood at night, mouth opening & face hitting, sometimes when he is upsetting, he hits wall with his head, not happy, moaning. His mouth biting ( he often had this in the past -- cheek/mouth biting, tongue biting) is not obvious yet -- this is good. I am thinking maybe the Amoxicillin/Clav does not work any more? Or maybe he has drug-resistant bacteria in his body already? Although the antibiotic I am using is not exact regular Augmentin, but I guess it is similar to it. OR maybe he does need some psych meds besides antibiotic? He is still ON Paxil about 7mg, I put him back on aripiprazole 5mg two days ago. Not seeing anything yet. Thanks, Jack

So, Paxil made you do the jaw popping? Any experience for Paxil weaning off? His cheek/mouth biting is creeping back a little bit, this is so fearful, sigh...

familyof4, how did you fix face hitting for your son? Is it one of PANDAS symptom?

peglem, I am quite sure his mandibular joint is hurt already. but I think it caused by his mouth opening and hitting. It does not look like he is trying to depressurize her ears either. He said he does not feel anything wrong in ear. well, maybe I should find dentist to check it. was your dd ON any meds at that time she did mouth opening/jaw popping? Thanks.

Hi, Does any of PANDAS kid have mouth opening? My son has been doing that for more than a month. After I started him on "Augmentin" 2000 mg/day two month ago, he showed obvious improvement, then I started to taper down slowly his psych meds and SSRI med. About maybe a week or two later, he started the mouth opening --- as wide as possible, then after mouth opening each time he hit his face with fist. At that time his mood was still good, so it did not bother him at all. We continued tapering down those meds, his mouth opening always there, face hitting always there as well, till now his psych med is weaned off completely only still ON about 8mg Paxil ( Seroxat, SSRI med). During psych med tapering down, his mood was getting upsetting/irritable gradually. Now his mouth opening still there but not as wide as before, but it is still there, and jaw movement also shows up. This jaw movement is so frequent. face hitting is still there. He said he does not feel good the muscle and joint on face. This upsets him a lot. His mood is getting worse. What are these? Tic? OCD? or tardive dyskinesia? Does any of you ever experienced this? Thanks, Merry Christmas to you all. Jack

My son has been "jaw popping" and "teeth grinding". Has your son been doing "jaw popping" and "teeth grinding" always or it comes and goes? Have you found the solution?

Thanks a lot Buster. You might know my detailed situation from EAmom (really appreciated her all helps ). ASO is only one check item I can get locally which is some kind of connections with PANDAS. But from all his symptoms in the past years, he fits PANDAS which I think. Now, he had some backslide after big improvement and looks like it is "still" there. I think this is good at some point as it is not getting worse further. well, I am still tapering down those SSRIs and Psych meds very very slowly now. But I am thinking and thinking if mega dose antibiotic starts working on the root of this illness, nothing can stop it to impove further, right? So it should keep forward more or less? Maybe something is caused by his long term SSRIS and Psych meds? it built up a "not good" some balance in his body and now it's unbalanced???? For those meds the reason we feared to get rid of them in the past years was just b/c his mouth biting, cheek biting. It was sooooooooooooo bad, there was always a big ulcer (just smaller a little bit than a dime)in his mouth, sometimes on his tongue..... When we started him SSRIs med first time many years ago, just 1/4 tablet(about 5mg), he told us he did not want to bite any more right after taking it several hours. From then on, we were on SSRIs board.......... Afterward, we've never seen that kind of helps any more. It did had some help, just some, not good enough, higher dose would make him so bad in his mood. he asks repeatly " is it OK, is it OK, doesn't it matter, doesn't it matter" in the morning for school, We have to answer " it doesn't matter!", anything more we answer would be not good for him. Is it a OCD? Anykids here have mouth opening? Thanks, Jack

Thanks. We did not test ASO right after IVIG. Not try steroids burst yet.

No, he did not have his tonsils out. His tonsils not look good, it is big and the surface is not good either.

sorry, title is too long, did not show up entirely.

Hi all, Last Friday I got my son’s blood check result back. His ASO is 394 IU/ml ( normal range here is: 0-200). So still pretty high. He had been on 2000mg Amoxicillin/ Clavulanate for 33 days when he had blood draw. Should I see his ASO decreasing after a month of high dose antibiotic? Or it will take longer time to see it? During Sep and Oct, he was ON Azith for 38 days ( sometimes 500mg/day, sometimes 250mg/day) , we did not see obvious changes with Azith. At that time we checked his ASO, it was 387 IU/ml ( normal: 0-200). We did 2 times throat culture as well, all negative. Other result from blood check last Friday: Liver and kidney function result shows OK. IgG 12.70 g/L ( normal 7.00 --- 17.00) IgA 1.52 g/L ( normal 0.70 --- 3.80) IgM 0.67 g/L ( normal 0.60 --- 2.50) We don’ t have AntiDNAse B test locally. He is still currently on 2000mg/day antibiotic (40days total already) which is similar to Augmentin, it contains 2000mg Amoxicillin and 285mg Clavulanate Potassium total. Augmentin XR is not available locally. So why his ASO is still very high? Does this mean those Antibiotic does not help for him? In some cases, does the improvement relate with ASO? When we switched to “Agumentin” from Aztih, after 4, 5 days, we saw obvious improvement: crying less, yelling less, morning for school got much better, mouth biting got better. Then I started tapering down Psych meds and SSRIs med. During those dose tapering down, looked like his progress stopped and had some backslide, also he started mouth opening. It is a very wide opening, the opening movement is not real quick, opens his mouth to a “high-point”, maybe the muscle/joint on face does not feel good, he hits his face with fist sometimes. This upsets him and cries a little more. Now he is still on Paroxetine ( Seroxat made by gsk) about 8 mg/day ( SSRIS med), Tiapride 25mg/day (psych med). Those dose is pretty low already for him as he weighs 165lbs ( overweight maybe caused by long term psych meds). He is pretty tall than average though ( 1.66 meters). He is turning 13 yo in Jan. What he is doing right now is still not too bad, not as bad as where he was years in the past. But looks like it “dwells” there, not go further forward. Mouth opening still there, cries sometimes, still hate homework. Always concerns school things and always asks “ is it OK, is it OK?” in the morning for school. I started him Advil several days ago. First two days 800mg/day total, now 400mg/day divided 2 times. Not see anything yet. We did IVIG locally on July 9th 2009 per Dr. K’s protocol. Did not see anything obvious improvement at that time. Any insight will be appreciated! Thanks, Jack

Hello Angela, Is your DD still on Advil? so do you think all the improvement should owe to Augmentin XR? Or Advil helps some? What dose of Advil do you use? times/day? Thanks, Jack

I got that too, confused me a lot and upset while my son is doing backslide! Jack

Thanks Coco, I wish I could. Thank you Elizabeth! EAMom, thank you so much. I spent you a lot of time, each of your replied email were so helpful and put my heart back in from my throat. Appreciated! Thank you all, Happy Thanksgiving! Jack

I just want to say thank you all from bottom of my heart for giving help to my son – turning 13 yo in Jan boy in China. Thank you Diana, EAmom, Cheri, Chrisw, Worried Dad, NacyD, mati's mom and all others. Thanks this forum. Thank you Dr. K for your email early this year to help my son!. Long long history – 7 years already! We are still struggling with this, we have no way to dx for PANDAS and we have no doctors to guide us locally, but this forum, all of your post and emails have helped me a lot and will continue to help me for sure! We are doing Sammy dose of antibiotic ( locally made similar to Augmentin) for about 4 weeks so far, some improvement showed up, there has been two weeks period that yelling, screaming and crying did not went out from our window to bother the neighbors!!!! Some other improvements as well! Well, he is still on ssris med and other psych meds which I have started tapering down the dose currently slowly. He still has some issues, biggest one is mouth opening and often he hits his face after mouth opening. He has some backslide this week slightly somehow. Hope the backslide stops and make a “U” turn to go forward to improve………… I will post details when it gets clear-cut after I wean off all those drugs(SSRIs and psych med). Hope I will have the chance! Hope all of our kids will be back to us from PANDAS, they will be as lovely as our Panda Bear! not PANDAS! Color picture maybe for Panda Bear is her dream forever, but our dreams are hopeful! Just want to say to you all THANKS for GIVING! Turkey is coming out from your oven soon later, Have a nice Thanksgiving. Jack

Cheri, so sorry to hear about your dh, hope everything works out. Miss you a lot. you gave me huge help, sometime just like on-line support in the past when I was on this board. Thank you, thank you thank you. I have been being on PANDAS board always now, my son gets improvement a little bit right now, hope he will continue. Moms overthere give a lot of help too. all of you are soooooooo sweet! Take care Cheri, Jack

Thanks Isabel, the probiotic I have in hand is Biostime Probiotics (made in France) and the other one is CVS pharmacy Probiotic which I bought in the US. They are not kept refrigerated. I will search more about it. Hope your ds will see improvement soon. thanks, Jack