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About CZL

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  1. Happy thanksgiving day! Hope all kids get better, all parents can relax and do something as normal parents!
  2. 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,
  3. 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!
  4. 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...
  5. 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.
  6. 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,
  7. 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.
  8. 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.
  9. 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.
  10. 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,
  11. Hi all, Please, regarding questions I have about long term antibiotic and what I did. Thanks,
  12. Thanks. His dose is 1.2million. Maybe not high enough. But this is only dose doctor could give.
  13. 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,
  14. 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.
  15. 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).
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