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Everything posted by deby

  1. I was reading your post, and also my son tics became really bad on May , just the weekend before the state tests.The same as you, we put on him some pressure, we made him practice, and I was angry at him that he doesn't listen. I feel bad now, but at that point he wasn't sick, and that is what parents suppose to do, we suppose to push our kids to get good grades. Today, everything change, now I want him to be healthy and happy, he is very smart and I hope he will realize some day that it is important to study and that will com from himself. Anyway, this is my understanding from this disease. Our kids have the tic disorder, the same as your son, my son had it very mild (shirt sucking, and once in a while fingers licking). Then they got strep (in your case could be skin strep, in our case we didn't have any symptoms), then they got stressed (school) all these factors aggravate tics. Because the aggravation was so bad and sudden, that why people from this forum ask if he had strep, that can make it very bad and sudden. We made blood draws. I recommend: Throat culture (rapid and 72 hr) (for you all family) blood test: ANTI-DNASE-B titers,ASO titers LYME, mycoplasma (to check for co infections) We got the blood results and even my DS8 didn't have any symptoms, he got extremely high titers. My husband and my other son became positive on strep too. We all got abs, and my DS8 is already having 25 days of abs. He is doing really good (knock on wood!), almost no tics. Together with the abs, as Chemar (Cheri) (thank you!) recommended, we added magnesium (as natural calm and epson salts). We took all the artificial foods, we eat organic. I hope this helps! Good luck!
  2. I wonder if the rash that you are talking is impetigo (skin strep) that can cause a sudden aggravation of the tics. http://www.medicinenet.com/streptococcal_i.../page2.htm#toce I would do a blood test and check his ASO & DNASE-B titers.
  3. It took us around 10 days to see improvement, but it is not going in a straight line, some days are better, then suddenly it got worse, and the better again. I also changed his diet (eating only organic) ,added Magnesium,multi-vitamins and omega-3. As EAMom recommended I also recommend doing a 72hr culture (not the rapid test) my husband and my other son came positive for that. Our house was a strep incubator! Good luck!
  4. Do you know if omega 3-6-9 is good for pandas? I've read somewhere that omega 6 is not good for pandas since it is inflammatory.
  5. We switched from Augmentin to azith and by Dr. advise we just started the new antibiotic the following morning.
  6. I don't want to talk, because the last time that I said he was better, he became worse the following day. But if you asked , we are on our 20th day of abs and he is doing better, his motor tics went from tics every 20 seconds to 1 tic every couple of hours. The vocal tics we heard them now only at the end of the day before going to sleep. I'm afraid of being happy, I'm afraid of falling again to this nightmare, I'm afraid that this is the waning and waxing thing that people with tics have. I hope that I'm afraid in vane and that everything will be fine!
  7. dear bubbasmom, I'm glad your son is doing better! those are really good news! How your doctor decided which abs to take? some doctors give abs for so long without changing, some change the abs after 10 days. In the first round, when you gave your son 3 different abs, did you see your son getting better gradually or only after the last antibiotic? What was the order of abs,do you remember? Thanks!
  8. Thank you for your responses, is it ok to give the steroid while with abs? any abs? Why some people give only 5 days and some continue for 1 month?
  9. In our case my husband and my non PANDAS son were positive for strep, and I had high ASO too, now we're all in augmentin but the regular dose. I would like to know what the doctors will suggest you to do.
  10. I am praying for your son's recovery and that tomorrow will be easier. I'm new at this and didn't know that IVIG is such a hard experience, but what I read it really helps. Hang on, you already passed the hardest part!
  11. I can not find the thread that talks about abx are known/thought to have anti-inflammatory properties, do you remember which abx? or could you point me to that thread? thanks!
  12. It depends how Pandas/TS manifests, in my DS8 case, he has screaming tics, and he was getting in trouble at school, the teachers thought that he was doing that on purpose. So we had to talk with the teachers. So many people don't understand the situation and they can not believe that the kids are not doing those things on purpose.
  13. My DS8 is the same as yours, he has also the screaming tic and 1 motor tic. How your son is doing? is he allergic to anything? did you do IVIG or steroid burst?
  14. Definitely, my son really tried hard to hold his tics during school. In the beginning (when his tics were milder) the teacher didn't notice them at all. During the bad days, she noticed the tics, but it wasn't bad at all during school. Then he comes home, and he can not stop doing them, constantly, every 30 seconds.
  15. So that is my point, after a regular dose of abs, ok, maybe a little bit longer, the body doesn't have the infection any more. The problem is that the immune cells are confused and still fighting a "now longer exist" infection. That's why IVIG is the only solution. Am I right? If so, why still PANDAS kids are months and months on abs?
  16. I'm new at this Pandas/meds/abs world, could you explain to me what is prednisone and why the doctor decided to give it to her?
  17. My sudden DS8 started with vocal/motor tics one month ago. After blood testing (DNASe titers extremely high) and a consultation with Dr T, he started abs 13 days ago. First augmentin, then azitromach. Then we test the whole family and mu husband and other boy were positive on strep and I had high titers too. Now we are all on abs. So, I believe my DS8 infection is gone, but still,we don't see improvement. Now I don't what I should do, continue the Pandas approach or not. So the question that probably everybody is asking , why the long term high dose abs? what infection are we trying to kill? I understand why the preventive dose is administrated, so those kids don't get a new infection. Are there any Pandas kids that got cured only from abs? Is IVIG the only solution?
  18. Thank you Cheri. I am aware of Herxheimer, but he is already 13 days on abs, I don't think he has an infection any more. I don't understand the concept of Pandas, why a longer abs is working. I understand the concept of preventive abs,so we don't want the kids with low immune system to get a new infection, but why high dose? the infection is gone, the only thing that remains are the titers, and that can take months to clear.
  19. We started giving him over the counter probiotic 3 days ago, but I've order one that was recommended from custom probiotics. I emailed Dr T yesterday, asking if I should switch back to the previous abs. Luckily the school is almost over, since he is having a hard time at school. I hope that he will get better over the summer, without the school stress.
  20. Hi Cheri, The abs are not working, and yes, he had very high titers, I had high titers, and my husband and my other son had a positive strep. But at this point, after 15 days of high dose abs, he shouldn't have any infection in his body, and his tics are not better. Pandas is controversial, some people believe and some not. I don't know what to believe. I don't know if I should continue giving him more abs or not. Deby
  21. Cheri, Could you explain to me what is biofeedback? Thanks!
  22. Hi Cheri, I've noticed that, but sometimes other people reply! What is your experience with hypnotherapy? Since regular therapy doesn't seems to work for us, a friend of mine pointed me to that. Just curiosity... Thanks, Deby
  23. Hi Heather, I was thinking I might try the hypnotheraphy with my DS8, he was having similar tics like your daughter, and they might be related also to stress. How is your daughter doing? Did she recover 100% Hope she is doing fine. Thanks!
  24. I'm not an expert, and I'm very confused too. This "tics" nightmare started for us 1 month ago and there is a lot of information about Pandas and nobody can say that they are sure 100% that Pandas is the cause of these behaviors/tics. What I am starting to think is in the case of my son, he had the neck injury, that was a real trauma for him (we call 911, the firefighters came , 2 huge trucks, the tied him from head to toe,and took him to the emergency room). That trauma together with stress (we put a lot of pressure on him regarding school and state tests) I believe lowered his immune system. Then probably he got some kind of strep (it didn't manifest, but we got really high titers). and then he got the tics. I started last week with a chiropractor that I really trust. He will go once a week for now. In the beginning none adjustments will be done, just more like a massage. The chiropractor said that he has like a ball of stiff muscles. First he need to make that muscles relaxed. I'm sure that muscle tense also cause him pain, so definitively we need to treat that. Then we will check if he will need other adjustment. In my next session I'll ask him what is the next step, if we need to do MRI or other test. I'll let you know what he says.
  25. Thank you for your advise, you are right, I've tried therapy and I think it is making things worse. I'm going to try different approaches. I think I need to concentrate to try to find the triggers, maybe going to a nutritionist/environmental doctor. Thank you!
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