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croatian mum

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  1. And here we go again.. 2 days ago I wrote here how good my son finally is doing. After prednisone things got much worse; it took 14 days for him to feel better. His improvement lasted exactly 7 days,and than his younger brother got sick with some stomach virus; (diarrhea, vomiting) and fever. (His brother is still sick). So, when my Ds 12 also got fever we tought that he will get this virus from his younger brother; but he didn't. His fever lasted only 1 afternoon. But at the same time his brother got sick; and he got the fever all his tics in full strenght came back again!!! So, what could it be? This can not be a coincidence.. This is the 3rd time that his tics got worse after having fever for few hours. He is still on Augemtin. Could it be that his body reacted to the virus? My only logical explanation is that this virus had a negative effect to his immune system; and for that reason all the benefits and improvement from the steroids are vanished? Am I wright? So, what do we do now? Any advice?
  2. Glad to let You know that my son's tics have improved. They are still present but much much better. It took 14 days to see some small betterment, but he is feeling better He still has tics but they are not that frequent as they were. So, yes; I think that steroids have been helpful.
  3. so, for everybody who have been hepful; but also for the others reading this post; I only want to let You know that my son's vocal tic has improved!He still has some eye rollig; neck tics; but the most terrible scream-tic is much better. It took exsactly 14 days after prednisone to see some changes. He still tics; and we usualy have one good and one worse day; he tics sometimes even for hours; but than he calmes and his tics are not as near as they were. so for everybody here; for Your answers and for those who pm me; a big thank You for Your support!It was a horrible month of despair; craying; feeling lost..I really admire his strenght to go true this.. hope he will stay in this condition at least for some time untill we prepare all the med.papers for new IVIG.
  4. Well, in our case he get's better for 1-2 hours every 2 days(meaning that he tics every 8-10 seconds; and that he is able to said 1 sentence whiteout the scream); and than our hopes go up. If one day he is better, the next day he tics constantly. It goes up and down, but generaly maybe some improvement in 2-3%. That's all. Today is day 13. Still hope one day he will woke up and the tics will be gone.
  5. Oh, sorry (my english is not that good). He is still not getting better. He tics much less now as while on prednisone, but still even worse than before we tried prednisone. I see some minimum changes in his mood and behavior; he seems like more calm the last few days and that's all. he still has this horrible loud vocal tic. I bought him Flaxseed oil; B6;and he is getting Nystatin for candida. Dr. told us it may take up to two weeks to see some resluts; so we are now day 10 after prednisone. We will wait for a couple of days and than I will write to our pandas dr. again.
  6. Thank You all for Your answers. Today is day 10., after prednisone. Still no improvement in tics. There are moments when his mood and behavir are better;and I'm allready starting to have some hope and than the hiperactivity kicks again. And than everything is a battle..he runs, he jumps; he is talking constantly whiteout control; explaining all the details. And he speaks so loud just to hide his loud tic which is absolutely immposible - so he sounds even worse. On the other side; now when I'm thinking back, he is maybe more calm the last two days. He also didn't go to school; and after beeing at home for 7 days; he decided to go. It is the same like with Teri's daughter. ''On the way to school he tics like crazy and told me he is trying to get them all out before school because she holds them in at school.'' The same when he comes back from school, he tics all the time. he also told me that he can not hold them in school for long time, and that he tics is school also; and that he's fine with it because everybody allreday know he has tics..But, the truth is that he will never admit to me how embaressed he really is because of them. But I know it - I know him so good to know. About the tics - don't know what else to do. It's hard to be here and pretand that nothing is going on while the whole house is one big echo of his scream. I'm also waiting for them to stop, hoping that one day he will woke up and they will be gone. But as soon as he says good morning the tic is here. I'm reading a lot of posts on this forum, and for most of people here there was a happy end and steroids have helped;but we see nothing; no changes at all, maybe just the frequency of his tics is not that often as while on steroids. Now he tics every 5-7 seconds. While on steroids it was every 2 seconds. He is exhausted; tired; don't know how much more of this he can take. So, there is not much we can do right now. You all gave us hope we will wait for few more days and pray. Thank You all..
  7. Thank You for Your answer. he was on 40 mg of pred. daily (1mg/kg). We have tried ibuprufen before steroids but only for 2 days with no results; and since he was so really bad; we decided to try the steroids because he needed something to make him feel better, but it only got worse. So, You are saying that it is possible to see results later? But we see no change at all. Some parents reported about slow improvement every day was better, but we have no changes at all. Only at the beginig of steroids he had 1,5 hour of beeing tic free. That's all. Your answer gives us hope. I'm just not shure how long will he be able to go on like this; he is really suffering..and we are too. Looking at Your own child in such a difficult situation and not having anything to make him feel better is the worse feeling ever... big hug to You too
  8. Hello again, as some of You know; my ds 12 had prednisone for 5 days for his loud (scream) vocal tic.During prednisone his tics were much worse. We are now 7 days post the last day of prednisone; and he is not getting any better.Our PANDAS doc. said to wait from 7 - 14 days after the treatment. His tic is still so loud; he screams 'ahh' sooo loud; like he is in a big pain all day long.. he also takes 2 x 1000 mg Augmentin; flaxseed oil; B6; nd Nystatin (4 times a day) for yeast. Are there any of You who got better after some time after prednisone? It's been 7 days after the treatment; he is totaly exausted; tired of all the squeeking and screaming. I'm just guessing - but; if steroids have been helpful and even if it takes time to see the small steps improvement- wouldn't we be able to see at least some small improvement ? We are really desperate now. Can we still hope and wait for 1 more week or do we need to do something ..?
  9. well, he was diagnosed with pandas, but I mean that this worsening of symptoms is giving me doubts now. I just read now that children with Lyme or some other infektions may have worsening while on steroids; so, maybe this is what we are dealing with. And to Chemar; my son is NOT taking ANY supplements; we were using a lot of supplements 2 years ago; than we stopped. He is not eating most of the food (absolutely no fruit; absolutely no vegetables).Today I went to tha pharmacy and I bought flaxseed oil and vitamin B6. I also want to give him B complex; but didn't want to give him too many new things right now. Which other vitamins would You recommend? What about magnesuim and Zink?
  10. I don't know. he is getting worse every day..I'm more and more confused about it because we see some tics we haven't seen in years. Maybe the doc. just decided to try prednisone to have a more clearer picture of what is going on..because, if this time his tics will improve whiteout antipsychotics (like Orap); it will be a miracle. don't know what else to say. we are shocked and whiteout explanation of what is going on here..
  11. No, there is no history of Ts in our familly.No one. I'we got an answer from dr. today; he told us that this can happend sometimes; and that we should continue with the treatment. Don't know, we still see no relief, so I'm worried that this was a trial for my son, but on the other side, a I have confidence in our dr. so hope it will be ok after the treatment.
  12. tank You, we just got in contact with our doc. he said that this can happened sometimes and that we should continue with the treatment. Hope to have good response at the end of steroids
  13. Yes, I did write to our doc.But it's sunnday; and he's not working today; so tomorrow he will probably answer, but there is a time difference about 7 hours - so I won't know anything before evening..and the question is - do I give it to him tomorrow or not..and tomorrow is soposed to be day 3. And the strange thing also is that yesterday and today he had exactly 1,5 hours of beeing tic free. Like they never existed..not a tic. It happened yesterday on the afternoon and today again. After 1,5 hour they all came back as strong as before. Strange.Don't know how to xplain this. And to Chemar: I highly respect Your posts/comments. I was reading them regulary before pandas diagnosis and learned that You really know a lot about it; and You have been helpful to us. (You didn't know it because I was not a member than so I never wrote ..)
  14. My son is now12., got pandas diagnosis 1 year ago; from dr. K from USA. Before that he was diagnosed with Ts here in our country in Europe; at the age of 8; treated with Risperidone, Orap; haldol ecc. The docs here have never heard about PANDAS. Than we got pandas diagnosis from dr K. who we had a chance to meet. And we had IVIG 7 month ago and after IVIG he was more or less tic free - some smaller motor tics but no vocal tic at all. Than his vocal tic came back; and we raised abx dose and they were gone in 3 days. he was fine untill a month ago when his vocal tic came back again.(and his vocal tic was and still is our biggest problem). So,for 6 month after IVIG he was meds free exept of abx. The best time in last 5 years..he has some smaller tics and movements..but nothing that anyone would notice exept me. And the thing is - this time he got his tics back on the same day his younger brother got fever and was sick. So, I was thinking that he was reactive to his brother's condition..since we saw no betterment in vocal tics; we tried prednisone as dr. K adviced us..and his tics went to the roof. I wish to think that maybe this is how is soposed to be; but still he had an immediate reaktion to steroids in worsening. I would like to think that maybe it is a hidden infektion or blame something else, but from what I'we seen - he just reacted very bad to steroids. What are the reasons -I don't know.. So, if it's Ts or Pnadas? A million dollar question for us.. we have no labs here, no doc. here.. watching his symptoms during the year he could have both. He fits all criteria for pandas but also for Ts. so, not an easy situation. I don't know, I'm so confused..any help would be appreciated
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