CZL

Hi Isabel I am "new" here b/c I had few posts in the past, but I read this forum everyday and email with moms here many to seek help. My son has been suffering this for 7 years. Long history for short, I am doing my son Amoxicillin/Clav acid as well for about 3 weeks so far. just upped the dose to 2000mg/day last evening ( from 1800mg/day ). Some improvement has been showed up after I put him on Amoxicillin/Clav, but he is still on some other meds ( SSRIs and Psych med ) which there is one I started him at mean time with starting Amoxicillin. I am currently tappering those dose down slowly. I am not 100% sure yet to attribute the improvements to Amoxicillin/Clave acid until I wean his those med off. He is turning 13 next Jan and weight 170 lbs --- a lot of weight gain from those long term SSRI and psych med in the past years. He is taller than common as well. I have a question, Did Dr. Latimer recommended a probiotic for you? Or you found some on your own for your ds? which kind, brand? Besides probiotic what else do you give your kid to help keeping the balance in the body? I do give my son probiotic which is available locally, last night and this morning, he had loose bowels, not very bad though. I am scared as I don't have doctor helping me, we are in Beijing, no doctor knows PANDAS. this forum and all moms and dads here are my doctor! Appreciate your help, Jack

Hello Momtocole1, Sorry to hear that. Hope everything gets under controlled soon. We are also in bad situation.............. Just would like to know the total dose of Augmentin/day which he is currently ON and his body weight, bid? Thanks, Jack

500mg dose Zithro a day ----- so usually 500mg once a day or divide it to 250mg -- twice a day? Any difference? Thanks, Jack

Is he still on some meds ( SSRIs, .. ) ? Hope he will improve a lot soon. Jack

Hi EAMom, all Very sorry for not reply in time, I have bad time these days………… This is about my son’s history ( not finished yet ): ( excuse me if some of the words are not correct ) My wife water broken 1 week early than schedule, after 24 hours in the hospital, had Caesarean birth. Infant period ( this is what we recalled after doctor diagnosed him ): Cried often --- maybe this meant nothing for a baby. But we did had hard time for this at that time. Less crept --- normal baby often did that, that is caused by something in the brain, right? Sleeping at night was not good always, and it was very hard for him to fall into sleep by himself at noon also ----- sometime during weekend we had to put him in the car and drive around to help his noon sleep. After he was able to walk, we remembered once we went out or went downstairs, he was upsetting when we put him on clothes and shoes. Started Kindergarden @ 4+ years old: first day whole day, was crying a lot, he had his towel ( brought with him from home ) in hand all the time in the first day. Did not play with any other kids for anything. We had to let him to stay at home for couple of days, then sent him again, a little bit better gradually, but every morning, he would cry, he was anxious for this “separation”. He cries almost every morning and always before got into the kindergarden, he would say to us “ be the first one to pick me up in the afternoon”. (I don’t know how to say this.) @ 5 years old, we found he had daytime urinary frequency showed up sometime, he felt he had urine, but most time just a little bit. He said/ask himself why I always went to toilet. This did not last very long time, maybe only a week. He also started have stomach (abdomen) ache often, we went to see the doctor, but nothing was found. ( actually maybe this was the abdomen tics ??? --- maybe started Tics already, but we did not see it. ) When he was writing, his neck/head was often backwards. And his neck often had something ( not so comfortable ). When he wrote, for example to write English letter, he often confused “b” and “d”, and “B”, he often wrote it as “ ”. For Chinese character, we use several pieces to consist of one character, he usually misplaced the piece left and right. He does not do these right now ( now he is 11 yo), but another strange thing is right now when he writes on the paper, he starts from the middle in the paper, then on the right side usually does not have enough space, for the next line he also starts from the middle, does same thing. The right side paper is just so “crowded”, the left side is almost empty! Same year @ 5 yo, one day we found his shoulder was jerking real quick which he did not even noticed himself. We asked him he said he did not know and then he said he did not know why he was doing that. We did not know either why he did that, we thought maybe it was not big deal, would go away. But we were totally wrong, it was not gone, ---------- To Be Continued once I have time -------------------- Hi EAMom, All, We had very bad days during our 3 days holiday. My son is doing tongue biting very badly, and tongue scratching with teeth. We had to put him back ON relative low dose SSRIs med for this urgency today. I feel very very bad. Last night he did not sleep almost because of tongue biting and very big mouth opening. He was so upsetting and sore. And also last night he said he had sore throat a little. And in the morning, I went to the hospital to get the throat test result ( we shifted today due to our dragon boat festival ) . The test result: 1. Throat culture test : Normal. ( it shows “normal bacterium grows ----- sorry I don’t have correct word in my dictionary for this ) 2. Blood test for ASO: anti-strep “O” test, 298, normal range: 0.0-200.0 IU/ML. I saw a doctor also to ask the test result and mentioned her PANDAS, she said she knows PANDAS, but in China, Research for PANDAS is not common, so …. She said due to ASO 298 is high then normal, that means my son had strep infection at least in past 6 months. She prescribed Penicillin for injection which is for long term effection ( 1 month ). She is surprised why the doctor I saw before did not ask us to do this check, this is the common check. I don’t know either, maybe my son’s symptoms is more no doubt to be TS and OCD+depression. This doctor today does not know why my son had this happened after he had Azith. She said first choice for strep is Penicillin, if one can not have that, Azith is the next choice. Right now my son is still doing tongue biting, after penicillin and SSRIS med back on, no improvement yet. ( maybe a little but hard to tell ). Now, I have following questions: ( I am new for PANDAS, I still need time to get to know some of more information about this, I will do that ) 1. PANDAS diagnosis: depending on this strep test result and ones symptoms? Then according to these make conclusion by experience doctor? What about chronic PANDAS dx. 2. So PANDAS is: brain is infected by step and triggered out the potential Neuropsychiatric Disorders, including TS? 3. If symptoms like my son has does not responsible well for meds or all supplement ( which I have already tried ), that is because of STREP? And Autoimmune system has the problem already? 4. No.1 thing to do is kill strep with antibiotic? And meanwhile using either drugs or Supplements for existing OCD/mood/TS….？ 5. Strep has genesis from tonsil??? Can I just simply cut it off to avoid next infection? 6. My son just had Penicillin injection which is for long term effection ( 1 month ) today, is it GOOD? BAD? I mean its persistent period is 1 month, if I don’t see any improvement, should I ask doctor give him another kind of Antibiotic? 7. For PANDAS, it is more complicated for treatment than TS, is this correct? Just that’s all for now, I am totally stunned already. I do need time to read all post in here and get to know more information. Sorry this is so long.... Thank you all for your help, Jack

Hi EAMom, Sorry for late reply. my son doing bad these days.............. The Azith I used it is made by PLIVA, trade name: SUMAMED, Azithromycin. It is light blue color. Jack

Hi EAMom, all My son was not doing good today, mood even worse, tongue scratching ( by teeth ) worse ( he started this yesterday ). the existing ulcers did not get worse further which is lucky. I don't know if this is caused by Azith, but we did not change anything else. So I stoped the Azith, I will wait for the throat test result to see what to do next. I can only say my son is so oddness from all others. I don't know why. I will find time to talk about him. we have a note which we made for almost past several years. We are in holiday right now ( "dragon boat festival" ), but holiday is not for our family, we only have "battle and struggle" during holiday even for each weekend. he cries a lot, groans a lot all day. We all exhausted. I will be back to tell details about my son soon later. Thank you all for the help and information. Jack

Hi all, I maybe was in tourette forum this morning, so did not find your replies -------- time difference --- no, there is no time lag in here ---- what a dizzy in my brain recently! Chemar ---- always thanks for all of your help. P.Mom ------ Thank you. We ourself often think of it as well why my sons' symptoms are some kind of different with other TS kids I met in hospital locally in Beijing. I've ever asked a doctor in internet who is in Taiwan and good at tourette's. He told me my son is not PANDAS, he said it must be a sudden worsening symptoms .... So we did not consider this any more. But, what he does is really some kind of different with other TS kids here I met. He does not have a sudden onset of symptoms, but biting his mouth for more than a year already, his mood is always bad like what I have mentioned in the post. I did remember when he started kindergarten, he cried every morning... EAMom ----- Thank you so much for your help and your detailed email. That is really helpful for me. I just noticed right now there are new emails from you which I have not opened yet, I will read it after this post. Thank you so much. Christie ----- Thank you so much for the information, will check the website. Yesterday I have my son tested in hospital for "throat culture" and a blood test which relates the strep. I will get the test result in couple of days. I will let you all know the result. I started my son ON Azith from yesterday, 375mg/day ( once a day ). today is day2, after he started Azith from yesterday, he told us ( yesterday and today ) he feels stomach upsetting and sometimes stomach ache --- I don't know if this is normal and caused by Azith? My son just told me a moment ago he is scratching his tongue a little bit --- this is scaring me, I did not ask him any more about this as if do so, maybe he will focus on this. If that happens. could be really bad. Five years ago, he bite his tongue badly and had to be in hospital. They used high dose meds to control it finally. michele ----- Thank you so much for the detailed information. I need to read your reply carefully and do some search to get know more about this. This time doctor just gave us Azith for 7days ( 375mg/day dose). I think after the strep result comes out, if it 's positive, I need to find a proper doctor to talk more about this. I am worried if they can give longer term dose of Azith. Normally doctors here don't do it. Thank you all for your help. We live in Beijing, it is not easy for something, such as seeing a doctor ( relative good one ) is hard. We were never told to do strep test before. ..... oh, by the way, do you know if all supps which my son is currently ON conflicts with Azith? Any one has experience on this? So if his strep test is positive, that means it is PANDAS then? that means it will be more complex than TS??? Thanks all for your help, Jack

Hi all, Thank you all so much for all of your input! Maybe becasue of time difference, I did not find your replies this morning. Just found them! I was little bit of busy today, I will read carefully for all of your reply and I will get you all back soon. Appreciate all of your help, Jack

Hello All, I posted following in PANDAS forum, I think I should post it here as well, maybe any of you here has good suggestions, thanks everyone! ------------------------------ Hello All, My son has TS, diagnosed alomst 6 years ago, he has almost all kind of tics --- vocal, yelling, "dirty word", " repeatable certain word", urinary frequency, neck jerking, shoulder jerking, eye blinking.... some of them showed up after he started meds, such as dirty word, repeatable certain word, shouting. He was ON ton of med in the past almost 6 years, including SSRIs med. His reaction for those med always were not good enough to be accepted by us and obvious side effect showed as well. Now he has been having mouth biting for alsmost one year, there are several ulcers in his mouth, he asks us why he always wants to chew his mouth (cheek), he knows he should not do this, he wants to control, but is not able to do so. this annoies him so much. Also his mood is bad, cries a lot. Everymorning, once waking up, he cries --- he said the ulcers in the mouth are so sores ( I guess this is the one reason for crying, but not all ). Everyday, after school, he starts crying from start of doing his homework to the end of it. We told him, he is not necessary have to do it, but he does not agree with this, he forces himself to sit there to do it with crying and we have to sit there along with him to help his homework as well every day. This has been being like this always for many years. about 10 days ago, his meds were completely weaned off ( gradually ). In the past 6 years as I said we tried ton of meds, including: Haldol, Tiapride, Topiramate, Olanzapine, risperidone, Zoloft, paroxetine..... some of them we just tried for a very short period. But Haldol, Tiapride, zoloft and paroxetine we took them a relative long period. Like I said, all meds effect did not perfectly control his symptom, just controlled part of it and obviously side effect ---- for example, sudden upsetting with no reason, twisted his whole body, hit his head with fist.... we tried a couple of times to stop his meds, but failed becasue of his symptom got worse, we feared. Doctors here emphasized us many times we should not stop meds.... they said he has TS+OCD+depression, anxiety....... This time, we finally weaned off his med completely and during weaning off the med, we put him on the Inositol, vitamins and after his SSRIs med was stopped we put him on 5HTP as well. Well, this time he did get worse also -- that is his mouth biting, in the past there was only one or two ulcers he bite in his mouth, now there are 4 or 5 them he bite. His bad mood is still there unchanged like before. we give him following right now: He is 11 years old, weights 170 lb. morning: 2g inositol, 200mg Pantothenic Acid, 1 teaspoon Natural Calm. Noon: 2g inositol, 1 tsp natural calm. evening: 2g inositol, 50mg 5HTP, 50mg B6, 1 tsp natural calm We have not seen any improvment yet from above supps. He has been ON inositol for about 50days while I started weaning off his meds. He now still has some tic, like vocal, but it is OK, comes and goes, not bother him much. just two big problems still there: mouth biting (inluding mouth opening, not always, I should say often has mouth opening), mood issues like I mentioned above, also looks like he would be very upset to do something which he should do on himself, such as after homework done, he would not pack up everything on the desk, the desk was jut so mess, once we require him to do this, he would be so upset, another example after he drinks, he would put the cup where ever he sit, even on the room floor. Anyway, two main issues -- mouth biting including mouth opening ( opening his mouth as far as he can, musle tension casuing pain on cheek) and mood issue are almost kill all of us now. We are yelling to each other so often becasue of he does not listen to us most of time for anything. we know we shuld be patient enough for this "sick kid", but how hard it is . We must find a way to get this under controlled. Do you think it relates PANDAS? He does have tumid tonsil, sometimes has tonsil infection, after infection, he had sore throat, and got fever sometimes. We live in Beijing, we almost went over all related hospital already in the past years. I don't think Doctors here know much information about PANDAS, neither its diagnosis. So my quesitons is I assume my son is PANDAS, what is the easiest treatment way should I take? Just give him azithromycin? So azithromycin is easiest and efficient way for PANDAS then? For how long time to use azithromycin to start seeing the improvement usually ? Is there a simple bood test to see if he has any kind of virus? Strep is one virus, what any other kind of virus I should look for in the blood test? Doctors here may don't knwo PANDAS, but if there are some virus in his body, they got to find right way to kill the virus. Or maybe I just ask doctor to prescribe azithromycin, just give a try. Is injection better than tablet? how many days for one period of treatment? How many days usually I will start seeing the improvement? Appreciate for any input for that who has such experience on this. Thanks, Jack --------------------------------------------- My son is just unhappy everyday. This is biggest issue for us. Maybe this is really caused by his mouth biting and the thought to bite the mouth. I am ordering SAMe, ST. JOHN'S wort, D-phenylalanine, will take a while to receive them. After his meds were completely OFF, he started waking up several times during sleep at night, once wakes up, he will feel upsetting, sometimes cries, but he still can get back to sleep in 20 or 30 minutes. we tried him low dose of Melatonin also ( I got Puritan's Pride 1mg Vegetarian formula melatonin, I tried 0.5mg/night for him), looks like this triggers his vocal tic and does not help much for his sleep. Appreciate all of your help and advise ! Jack

Hello All, My son has TS, diagnosed alomst 6 years ago, he has almost all kind of tics --- vocal, yelling, "dirty word", " repeatable certain word", urinary frequency, neck jerking, shoulder jerking, eye blinking.... some of them showed up after he started meds, such as dirty word, repeatable certain word, shouting. He was ON ton of med in the past almost 6 years, including SSRIs med. His reaction for those med always were not good enough to be accepted by us and obvious side effect showed as well. Now he has been having mouth biting for alsmost one year, there are several ulcers in his mouth, he asks us why he always wants to chew his mouth (cheek), he knows he should not do this, he wants to control, but is not able to do so. this annoies him so much. Also his mood is bad, cries a lot. Everymorning, once waking up, he cries --- he said the ulcers in the mouth are so sores ( I guess this is the one reason for crying, but not all ). Everyday, after school, he starts crying from start of doing his homework to the end of it. We told him, he is not necessary have to do it, but he does not agree with this, he forces himself to sit there to do it with crying and we have to sit there along with him to help his homework as well every day. This has been being like this always for many years. about 10 days ago, his meds were completely weaned off ( gradually ). In the past 6 years as I said we tried ton of meds, including: Haldol, Tiapride, Topiramate, Olanzapine, risperidone, Zoloft, paroxetine..... some of them we just tried for a very short period. But Haldol, Tiapride, zoloft and paroxetine we took them a relative long period. Like I said, all meds effect did not perfectly control his symptom, just controlled part of it and obviously side effect ---- for example, sudden upsetting with no reason, twisted his whole body, hit his head with fist.... we tried a couple of times to stop his meds, but failed becasue of his symptom got worse, we feared. Doctors here emphasized us many times we should not stop meds.... they said he has TS+OCD+depression, anxiety....... This time, we finally weaned off his med completely and during weaning off the med, we put him on the Inositol, vitamins and after his SSRIs med was stopped we put him on 5HTP as well. Well, this time he did get worse also -- that is his mouth biting, in the past there was only one or two ulcers he bite in his mouth, now there are 4 or 5 them he bite. His bad mood is still there unchanged like before. we give him following right now: He is 11 years old, weights 170 lb. morning: 2g inositol, 200mg Pantothenic Acid, 1 teaspoon Natural Calm. Noon: 2g inositol, 1 tsp natural calm. evening: 2g inositol, 50mg 5HTP, 50mg B6, 1 tsp natural calm We have not seen any improvment yet from above supps. He has been ON inositol for about 50days while I started weaning off his meds. He now still has some tic, like vocal, but it is OK, comes and goes, not bother him much. just two big problems still there: mouth biting (inluding mouth opening, not always, I should say often has mouth opening), mood issues like I mentioned above, also looks like he would be very upset to do something which he should do on himself, such as after homework done, he would not pack up everything on the desk, the desk was jut so mess, once we require him to do this, he would be so upset, another example after he drinks, he would put the cup where ever he sit, even on the room floor. Anyway, two main issues -- mouth biting including mouth opening ( opening his mouth as far as he can, musle tension casuing pain on cheek) and mood issue are almost kill all of us now. We are yelling to each other so often becasue of he does not listen to us most of time for anything. we know we shuld be patient enough for this "sick kid", but how hard it is . We must find a way to get this under controlled. Do you think it relates PANDAS? He does have tumid tonsil, sometimes has tonsil infection, after infection, he had sore throat, and got fever sometimes. We live in Beijing, we almost went over all related hospital already in the past years. I don't think Doctors here know much information about PANDAS, neither its diagnosis. So my quesitons is I assume my son is PANDAS, what is the easiest treatment way should I take? Just give him azithromycin? So azithromycin is easiest and efficient way for PANDAS then? For how long time to use azithromycin to start seeing the improvement usually ? Is there a simple bood test to see if he has any kind of virus? Strep is one virus, what any other kind of virus I should look for in the blood test? Doctors here may don't knwo PANDAS, but if there are some virus in his body, they got to find right way to kill the virus. Or maybe I just ask doctor to prescribe azithromycin, just give a try. Is injection better than tablet? how many days for one period of treatment? How many days usually I will start seeing the improvement? Appreciate for any input for that who has such experience on this. Thanks, Jack

So useful information Chemar, Thanks. I am going to put my son back on 5HTP again later soon. I have terminated his SSRIs med today ( tiny dose for about 20 days already ). I am hoping this time it will improve his sleep ( waking up at midnight several times ) at least. Thank you so much for all of your help. Jack

Hi Everyone, thank you so much for the information and encouragement, I won't give up for sure. all meds were given by his doctor, actuatlly they suggested high dosage to control his mouth biting and mood issues. We were just so scared not to follow this. this was not we did not listen to the doctor, we did tried the dosage they prescripted for a long enough time, the result was totally unacceptable. At that time I even wanted to take those meds in person to try -- I wanted to feel those meds myself as little kid hard to tell what was wrong. But the doctor stopped my "stupide" idea. To put him on SCS is my own idea. I consulted this with some people, they don't trust this, but they don't think there would be side effect. I did not have my son to wear this evey day, but I wear it on evey day as I want to know what that is. So far for myself I have not found anything wrong. For my son, have not seen obvious effect. Maybe just like meds, different people has different result. we did try the Topiramate(topamax) alone, the dose was not low, up to 100mg gradually, No, it did not work. Anyway, I am decreasing my son's meds vey slowly. Those meds are real drugs for my son. I hope I will be able to get rid of meds finally and use some natural ways for him to try. Thank you, CP, myrose, momaw And thanks Chemar for all of your help,

CP, Thanks for your reply . What lovely boy and big improvement you have! My son is 11 years old right now. His moods are so bad. Every morning once he wakes up, he will cry. Eveyday when he comes back home from school, once he starts his homework, he will cry. We tell him if he does not want to go to school, he can stay at home, if he does not want to do homework, he can just not do it. We just don't want him have any stress from those as long as he feels good. But he knows he should get up for school which he does not like to go, he knows he should do homework which he does not like to do... He would cry instead of any othe way. We don't understand why. Last year he stayed at home for couple of month, but he still had bad moods. A lot of folks ( Tics parent, not including doctors ) think this is casued by meds, of course some of them is caused by this OCD --- mouth biting, a ulcer in his mouth, it is so painful for a 11 yo kid, hoho..... I don't know what correct way is to improve him, so that's why I want to try to get rid of meds, that will be a big challenge for us because of his mouth biting! the SCS, see their website, http://alpha-stim.com/ . So far I have not seen any obvious improvement yet with SCS, now I just don't know it is good or bad for long term use. Don't want to have side-effect --- I hope there is not. Thanks for all of your help

Hi everyone, Does anyone know SCS of Alpha-Stim? This is a prescribing device, I bought it in this Feb. I have been hoping this could help to improve my son's moode problem. So far, I have not seen any obvious effect yet, this is disappointed a little bit, but it is OK, just I don't want to have any side-effect for long term using. Does anybody know this? My goal is to get rid of any meds for my son, right now he still takes Zoloft, haldol and Topiramate as I mentioned in other topic. I understand to decrease dosage very very slow, I do also know this process will be very very hard as well becasue his mouth biting/grinding. I have ordered inositol, vitamins, it is on the way to me ... I believe I will have a very very hard time to go while weaning him off the meds. Thanks,

Thank you for all of your help. I have talked to a doctor and he said it is not TD.

From the symptom I described above, it is TD??? I do know Haldol can cause TD, but really I don't know what it is exactly. I heard some kid with Tics do have mouth opening, but I don't know it goes fast or slow.

Dear all friends here: "irreversible movement disorder " ----- I am just scared by this ! Maybe my son has this already!? My son 11 years old, has TS for almost 6 years. He had all kinds of Tics --- eye rolling, shoulder shiver, vocal.... He has tried all kind of meds so far. Right now all other tics are not severe just the very bad thing is he has mouth biting, mouth opening, mood issue -- crying often, depression. He right now taking Zoloft 40mg/day, Haldol 1mg/day, Topiramate: 25mg/day. I also put him on Natural Calm Kids for couple of months already. His weight is 170 lb. I hate any meds, but..... I am planning to decrease the meds and hoping I can get rid of them. I have talked a friend here and will try the experience she shared with. I have started salts bath already. Now, my question is his mouth opening ----- He opens his mouth to a utmost slowly, he does this very open, is this "movement disorder"? I noticed if I increase the dosage of Haldol, this could get better. Is movement disorder really irreversible??? His mouth biting maybe is kind of OCD, he bites his mouth inside around last teeth, suck and bite by both upper and lower teeth. He also often has chin moves left and right then teeth touches the side around --- this causes ulceration and sore. Looks like his mouth opening, mouth moving right and left, biting are mixed together at most of time, he has this for about a year already. Thank you every one for all of your help. What I can do if this is "movement disorder"?

a lot of parents in China use cupping for our kids Tics. We do cupping at home by ourselves.