CZL

Happy thanksgiving day! Hope all kids get better, all parents can relax and do something as normal parents!

My son has been screaming for about more than 3 weeks now, that is loud and heart-broken screaming. Often extreme loud screaming just after he lies down for sleeping. Looks like he is doing not too bad when he is outside, maybe he controls a little bit better when others are around. Is this a tics or OCD? Any kids had that? How did you deal with it? Thanks,

Lorazepam (Rola, sp?). I was scared to give it to my son every night at that time. we found Seroquel did not do anything good including for sleep, actually it bothers sleep. psych meds always add more symptoms on original symptom. I got him OFF all the psych meds including SSRIs last August during summer break, it did not get worse, actually it is a little bit better than he was, but still struggling, terrible disease!

We ever tried ton of meds for my son, including Seroquel (QuetiapineFumarate). we did not see any positive reaction when my son was on Seroquel, always showed some strange symptoms, tried dose from 12.5mg to 50mg. Also, his sleep was bad ( hard to fall asleep )at that time. He had to take other meds(sleeping pill) to help his sleep...

Hi lboll, Ever tried to go to any hospital for local ( such as RuiJin hospital in Shanghai)? Maybe you can try to talk to doctor there and show them the Parkway doctor's prescription also show them Dr. T 's email to get Ceftriaxone injection for a couple of days? Maybe very possible to find such doctor who is willing to help patient like you in Shanghai... Soooooooo hard to wait for your doctor's back.

Angela, so happy to hear your dd is doing quite well right now. you mentioned vitamin D2, or it is vitamin D3 you takes? Should I test my son's blood to see if his vitamin D deficiency or just take it without any problem? thanks,

Hi Cheri, a question about vitamin D3 daily. If I don't know whether my son is Vitamin D deficiency, is it OK to take D3? What dose daily is OK? Many PANDAS kids take D3 maybe they all have tested the blood and found D deficiency. always thanks for your help, LeLe, hope your son gets better soon.

lboll, 1. Add probiotic as well while doing antibiotic ( I am also too new about this). you can search probiotic on TaoBao ( if you don't know, ask some local friends, they all know Taobao), you can get some probioitc on-line which is made in US, price is much higher than it in the US though. 2. I don't know your situation, I hesitate to say, but I do really want to suggest, if I were you I would go back to the US to see dr there right away. What I have had so far is always frustration+desperation.

I don't know how the carrier is defined. I've never tested my ASO before, just not long ago, did once and it was high. Yes, after strep infection, ASO would be high. But I did not notice when I got the strep. I guess maybe my ASO is always high. Doctors here said maybe very high percent of adult have high ASO, if it does not show anything wrong with it, don't need to care about it ( I don't know if this is correct or not). I am just thinking not to infect my son if I have strep.

EAmom, thanks. I will throat culture myself ASAP. I started taking anitbiotic on myself. Should I do that before throat culture? culture first. If you start abs b-4 the culture you might get a false negative. I got my throat culture result, it says " No Pathogen Growth", so that means no strep, right? I put myself on Azith right after I had my throat swabbed, total 10 days ( 500mg/day for 2 days, 250mg/day for the rest ). I should do it longer? Does it mean I am a carrier? What do you usually do for the strep carrier? Thanks,

Hi all, Please, regarding questions I have about long term antibiotic and what I did. Thanks,

Thanks. His dose is 1.2million. Maybe not high enough. But this is only dose doctor could give.

I have not found one yet. They all have regular augmentin, no XR. please email me if anyone tried one and without any problem for Augmentin XR. Thanks,

Hi lyme mom, Thanks. Please once you have chance to see your doctor, ask about benzathine penicillin ( is it same as bicillin??) shot monthly for PANDAS.

Worried Dad Have you ever tried to up the XR dose to speed up the improvement? Curious if it is just working at right dose, neither higher nor lower(absolutely).

We switched from high dose antibiotic ( amoxicillin/clav ) to pen injection 1.2million I.U monthly by doctor. I don’t know what the pen injection monthly will do for my son. I will see. For me, pen injection is more like Prophylactic dose , maybe it will be OK for re-infection from the strep, but would not do anything for current symptoms – I hope I am wrong and it will do something to help my son. Please post if anyone has some comments on pen injection monthly other than painful only. And anybody know how much it releases everyday equivalent the ?mg of amoxicillin about? Also I have questions for you who are doing long term high dose antibiotic: 1.When your doctor prescribes high dose abx for long term, does doctor prescribe something else which must be taken along with abx? Or doctor just say “ taking some probiotic as well with abx”. That’s it, nothing else? 2.What risks might happen during high dose long term? I guess there are maybe many of them potentially, but in generally it will be no big problem? 3.So taking high dose proper probiotic will eliminate major side effect coming from abx for sure? Regarding the probiotic dose, the higher the better? What is the right dose? 4.Some side effects from abx if occurs would be un-reversible or it would go away once OFF the abx? Above questions might be stupid or so complicated to answer, they are just always in my mind and bothering me, scaring me, fidgeting me everyday while I put my son on high dose abx without doctor’s guide. Well, if I saw his 90%-100% improvement with abx I would feel a lot of better, but it was not, I did see some improvement but not that big improvement though. And I found he would be doing better with antibiotic along with a pscy med (for example: Aripiprazole ) as well. Either one alone would not do big help. This confuses me also why it is that? Still need time to figure it out exactly. When I did my son high dose amoxicillin/clav, I did following as well: 1.probiotic --- Culturelle, one capsule at the noon and one other probiotic in the evening 2 hours away from abx. Some yoghourt which contains some probiotic as well anytime he wanted in the day. 2.monthly blood check for liver, kidney function, ASO, blood routine examination, routine urinalysis. So far nothing wrong were found, just this ASO is still high, @390 always for about 6 months ( normal is 0-200). Well I should mention as well, we did IVIG last July, before we did that his ASO was 290, after IVIG and with abx, his ASO was always around 390. Don’t really know what that means. Throat culture twice, always neg. 3.Omega 3 -- Kirkland Fish Oil/omega3 Concentrate, one capsule tid. 4.Vitamin D3 – 2000 IU, once every other day. 5.Sometimes Epsom salt bath Just about that. Is there anything I must do and missed??? I need to collect all information in case I need to go back to high dose. Thanks

But anybody tried one with successful? right quality and not deceptive? I know maybe 99.999% of you would not do it that way.

Does anybody know any where can do online shopping for Augmentin XR ( not regular Augmentin)without doctor's prescription? Just want to know this information in case I have to do it. Thanks, Jack

EAmom, thanks. I will throat culture myself ASAP. I started taking anitbiotic on myself. Should I do that before throat culture?

I tested my son's ASO again after 35 days from last time. this time his is 385, He has been on antibiotic for 80 days when he had blood drawn this time. His ASO was 394 last time. I tested myself as well, it is 322. normal range here is 0-200. I've never tested my ASO before, I should do that earlier. Am I the strep carrier? Should I put myself on high dose of antibioitc long term? my son's ASO is not coming down for long time becasue I am maybe a carrier and he is infected always? Thanks,

Peggy, you couldn't do it any more just because of extremely painful? Actually my son did that once ( yes, he feared it becasue of pain ) before I tried any other antibiotic, but we did not see anything in that month. The doctor prescribed this injection just becasue of his ASO was high, his throat culture was negative for twice in the past.

Peggy, you couldn't do it any more just because of extremely painful? Actually my son did that once ( yes, he feared it becasue of pain ) before I tried any other antibiotic, but we did not see anything in that month.

So it is effective for PANDAS healing just like what Azith/Augmentin does? the spectrum of anti-bacterium is narrow, maybe just work specific on strep and don't need to take any probiotic and does not have any other side-effect --- or it means it is most safe antibiotic than others? Yes, it is very very painful. Does it need high dose than standard for PANdAS ?

Want to know some more about benzathine penicillin injections, get one injections every 28days. It is said it is more effective for preventing from strep infection and safe long term??? Any PANDAS kid tried this with success or failure? I noticed on this forum very few tried this, any more explanation on this? Thanks

We have tried both regular Augmentin and Augmentin XR. Our best results were with the XR, but our son was taking that 1,000 mg. dose not once each day but twice, so he was actually getting 2,000 mg. XR while on the dosage. Not only were his symptoms improved on the XR versus twice daily dosing of regular Augmentin at 875 mg., but the XR did not seem to upset his stomach or gut nearly as much. Interestingly enough, the prescription of Augmentin XR we were given did have a "split line" down the middle of the enormous horse pill, and no one warned us against breaking them in half. So once we'd completed 10 days on the full dosage, we did try cutting him back to what we thought would be 500 mg. Augmentin XR twice daily. Didn't seem to be any negative side effects of breaking the pill, but now I'm wondering if it was completely ineffective because by doing so, we'd breached the special outside coating? So, when taking sammy dose, only takes Augmentin XR, any dose below that should be regular Augmentin? Any more input about this?