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Everything posted by deby

  1. Take it easy Lynn, I'm sure that he is really tired. I'm sure that tomorrow he will be much better, and you'll be able to enjoy your vacation. And if he tics a little tomorrow , don't worry, enjoy your time with the family, relax, he'll feel that you're happy and he will more relaxed too. When you come back home then continue your research. Enjoy your vacation!
  2. I think his problem is a minor OCD, that makes him be perfectionist. When he makes a mistake while reading, he gets frustrated and then he yells (tic).
  3. Dear Cheri, Dr T decided to switch to Azithromycin , looks like there is more success with that antibiotic. What I understand it could be that yesterday he had an Herxheimer Reaction. Today it looks like he is a little better than yesterday. In the other hand, it could be that all those abs are not working, and it just that he has some allergy to something, that some days he is better than other days. Everything could be, nothing is clear at this point. We are trying different directions, we don't discard pandas specially because it actually showed his titers extremely high and my other son has a positive strep culture. Now my problem is how i find if he has allergies. I think I'm going to start eliminating one thing at the time, maybe I'll start with dairy that seems that lots of kids are sensitive. Thank you for you interest!!! Deby
  4. We switch Azithromycin since the doctor (Dr.T) thought it is better for pandas, but yesterday was worse and it might be related to Herxheimer Reaction. Today his tics were not so bad, but his mood was edgy. I don't know, it is so hard to tell if it is working or not. I think I'm going to stop with CBT, my feeling is that it is not helping in his case. I need to do some research on allergies, I'm trying to find the trigger for his tics, and till now I can not point to anything in special.
  5. I'm a little overwhelmed about how to proceed with the supplement/ allergy discovery/ triggers discovery etc I was wondering if maybe a nutritionist or environmental doctor could help me. Maybe try some homeopathic approach. Any recommendation for a doctor around LA.?
  6. Thank you! We are doing some epson salts and natural calm, but I'm still not sure if they are helping. He started having some lose bowels so, maybe it is too much magnesium.
  7. Does Cognitive Behavioral Therapy help kids with tics? How doe it work, what do they do at the session? My son is 8 years old and I'm not sure if I should do that. Some doctors say to try to ignore the tics, sending him to CBT maybe is worse. What is your experience with CBT?
  8. My ds8 started having tics 1 month ago. One thing that I've noticed is every time that he needs to read he starts with the vocal tics. The thing is that he was a pretty good reader. In one hand i don't want to put pressure on him in the other hand he need to continue reading. What he told me today, that when he has a mistake he gets really frustrated. Could be this a start of OCD + TS?
  9. Hi Lynn, We tested for ASO,ANTI DNASE-b,mycplasma,Lyme and others, but those are the basics. I'm not sure either about Pandas. My son titers became high, and we run throat culture in the family and some of us had positive for strep. So we definitely had it in the family. Does the strep the reason for my son's tics? I have no idea. He is on abs, in the beginning i tlooked like he improved, then we switch abs, now it looks like he is going downhill. Is it bcause of the abs, or is it a wax and wane process? It is really hard to tell. Nobody knows. It is really frustrating. Deby
  10. We're still investigating what could be the cause of my ds8 sudden tics. We found that he had an infection so we started treating him with abs (it looks like it is PANDAS). Anyway, so far no improvement, there were some better days and now some bad days. I'm continue to check if there are other ways that I can help him. The "head of immunology of UCLA" was a disappointment, he recommended us to give him Neurotin, and some abs. I'm not going to give him any medicine, so far it is very hard for him, but he can continue doing the regular things (school/play/etc). Questions: 1) What is the best allergy test ? 2) What is your experience with therapy? we started sending him to therapy, and we're not sure if this is a good idea. some people say it is better to ignore the tics, and if during therapy they talk a lot about the tics, maybe it makes the things worse?
  11. Hi Dawn, I'm happy that you found another puzzle piece,I'm sure that you'll find all of them. I hope that Evan is doing better. I wish him a fast recovery! Deby
  12. Thank you dear friends for you advise. I was hoping that I will see improvement faster,but I guess the reality is that it takes long time. I don't know why my DS8 is not eating at school, food that he used to like, it doesn't like any more. He wants to get out from the class ASAP to release his tics.Many things could be.
  13. Thank you Kim for sharing this. I had problem opening the first link, and to tell you the truth couldn't understand the other 2 links either. I still have lots to learn
  14. Dear Mary, Did you change abs in this period? which one your dd is using? Thanks, Deby
  15. It could be, he had some stress at school (state tests) and we put some pressure on him.
  16. After checking my DS8 for titers and discovered DNASE >1360 we started giving him augmentin. After 3 days he started having some improvement and I was full of hope that we are on the right way. Today, again, he had a bad day with his tics. When I come to pick him up from school his tics were already pretty bad. Then I discovered that he didn't eat anything during the day.(and actually he barely had breakfast) I read that hunger could be one of the triggers for tics. Can anyone tell me how long it took to your PANDAS kids to show some improvement from the abs?
  17. Thank you for sharing you story, I am happy that your kids are doing better after such a nightmare. I wish a fast recovery for your kids, and that PANDAS will be behind you. Thank you for all your help, 2 weeks ago I was hopeless,heartbroken. I am still very worried about my son, but now, thanks to you, I have hope and a path to follow. Lets hope I am in the right way!
  18. Thank you for sharing this. I had psoriasis for 20 years, since it was always very mild it never really bother me. My question is , if this is the root of the problem, why it happened to my son at the age of 8 and not before? I'm going to an immunologist (he is the head of UCLA med center) on Monday, I'll discuss this issue with him.
  19. Thank you Cheri, still the way is very long, some days he seems better, and then again he has a burst of tics. Overall looks like he is doing better, but it is too soon to talk.He is with abx only 5 days, hopefully it will help. Thank you again!
  20. Hi Lynn, Did you have your son tested for ASO titers/Anti Dnase? I've tested my son and all those tests become extremely high. He didn't have any sign of strep at all, and yet looks like he had/has some sort of infection. We started antibiotic on Sunday and (I don't want to open my mouth and talk too much) he is doing better. His tics are much less in frequency and power. His behavior is more relaxed and less nervous. I just wanted to point this to you, maybe he has an infection that causes his tics. If you want i can give you the list of the blood tests that I did. I also took my son to a neurologist and the old school doctors don't believe in infections causing tics, but there are more and more kids that are been identified as PANDAS, and antibiotic and other methods really cured them. Deby
  21. I'm new at this, so I am not sure if I should do this test. My son's ASO levels were high and the DNase levels were extremely high >1360. Should I do this test? how much it costs? how long it takes? is it ok to do it while he is with augmentin? Can this test gives more information than testing for titers? Thank you!
  22. Hi Dawn, My son recently started with tics, and we suspect PANDAS. I was searching the forum, and I got to this post. I have psoriasis for 20 years and also I had really bad strep infections when I was a child, that eventually they went away after a long treatment of antibiotics. Can you explain to me why all this could be related to my son PANDas? Thank you! Deby
  23. Hi Wendy, We got the blood test results back, ASO=139 DNASE-B = 1360! super high Mycoplasma low. That means that probably he had strep around 8 weeks ago. We are going to see an immunologist on Monday, in the meantime he was on AMOX, but my ped change it today to AUgmentin. -With your knowledge, for how long he needs to be with antibiotic? -the motor tics look better, but now the vocal seems to be worse. Any idea/advise? -Can the high titers could be the reason for other infection that it is not strep? -Do you think I should do any other recommended tests at this point? Thanks! Deby
  24. Thank you EAMom. My son's symptoms are tics. We started Amox before getting any result from the test bloods, just because we were suspicious of PANDAS. He gave us AMOX for 10days. If it doesn't help do you know if we can switch right away to Augmentin or Azitromycin? I don't have a good Doctor yet, my ped is very nice and tried to help but he doesn't know much about PANDAS. We'll see how it goes. Thanks!
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