Dedee

cwmom, Sorry to hear of your son's problems. I do agree with the others that it is always a good idea for a culture anytime there is a reoccurance of symptoms. My son also takes amoxicillin 250mg twice daily. If he were to miss a full day of treatment he would show symptoms even if there was no exposure. Dr. Murphy said they don't have a complete explanation of why some children are so dependent on antibiotics to control symptoms, but it seems to be a common theme with PANDAS children. On that same note, we have had one episode of tics returning without missing any antibiotics. We switched to Augmentin for 14 days, (even though the culture was neg.), then back to the regular maintenance dose of amoxicillin. It did seem to help and after about a week of the treatment he was mostly back to baseline. I think that in some cases the consistency of antibiotics is as important as the type. On the subjet of the titers. It is very difficult to say for sure what that indicates for him. My son had an antiDNASE level of 3,000 six months after his tonsilectomy and the start of his antibiotics. His pediatrician couldn't believe it. I think you really have to watch for the trends in the titers more so than the level itself. PANDAS kids have such abnormal responses from their immune system and it appears differently in many of them. That seems to be why it is so hard to find one concrete treatment. So many of them will respond differently to each therapy. I guess that is part of being an individual. Hope to hear that your son is better soon. Dedee

Wow, as if you don't have enough to worry about. Now you are supposed to worry about EVERY child in the class room. I mean I understand that you do have to have some resemblance of order for children to learn. But really, can parents not be more supportive? They just don't realize that they could be only one illness away from your current situation. I wish people would just stop to think before being so judgemental. As far as the doctor, well, just because their isn't currently a commonly accepted cure doesn't mean we stop trying. If that were the case, we would still be in the dark ages when it comes to medicine. That is the only way we learn, we move forward, sometimes in an clumsy manner and by trial and error, but WE KEEP MOVING. If we don't, what hope is there? I just hate the "we don't know what works so let's do nothing" mentality. It takes the courageous parent, child and doctor to work toward a cure. Good for them! Dedee

Thanks for posting this article. I hadn't seen it. I sent it to my pediatrician. I love the sharing of information we have here. Have a great day! Dedee

My son did that for quite a while. So much so that we ended up at a pediatric urologist. Of course they couldn't find anything wrong. That was before we found out about PANDAS and got an official diagnosis. When we went over that with Dr. Murphy she said it was a common occurance with PANDAS kids and they should be strep tested when this occurs. Sometimes it occurs, (just as behavioral issues) right before the symptoms of illness and sometimes it correlates (sp?) more directly. In any event, I think it is absolutely worth testing. Is your son already on antibiotics? If so, that may be less likely. Oddly enough my second son, who is not PANDAS, but has some anxiety issues, also has this issue intermittenly. I'm not entirely sure but his seems to be more of a compulsion to go back and forth to the bathroom. He never gets much out but insists he needs to go. I try to say as little as possible and it will eventually pass. Sounds like your son is really bothered by this, so I would start looking for possible causes. Sometimes it helps to increase fluid intake somewhat to flush bladder of irritants (that was the urologist only suggestion). Hope things improve soon. Dedee

I just had to say how sorry I am that you all are going through this. When I read your post, it just gave me such a sick feeling to know how much your family must be suffering. I can only imagine how stressed you are. I am sure your heart is breaking for your daughter as you struggle every day to find help for her. It sounds as if you are going through all the right channels and exhausting all resources. My goodness, can you imagine what this childs life would be like if she didn't have such determined parents. I always think about that when I read some of the posts on this board. What about the poor kids who never got help in the past, before anything was understood? Or even now, so many parents still just take the first doctors word and that's it. It is so awesome that she has you to fight for her. I know you are exhausted. I just wish I had something to offer that would help. I will pray for your family. Dedee

Hello and welcome, I am glad you were able to find this forum. You will find much support and information here. I was wondering what the current state is for your son. Are you going through a mild phase that is something he is able to live and thrive in? If the symptoms are still severe to the point that his everyday life is affected then I encourage you to find a physician who is knowledgeable in PANDAS and other issues of this type. There are several references here on this forum. I realize many have to travel, but I assure you it would be worth it in the long run. Even if your current physician agrees it may be PANDAS, that is not helpful unless he is experienced in treating these children. You would find much comfort in finding a physician with experience in this area. I suppose I have stressed that enough. I am so glad you are being active in your childs care, he is very lucky to have such a dedicated mother. Good luck with your journey. Keep us posted. Dedee

T.Mom, I am so sorry that your daughter is having such a tough time. This is such a hard age and adding something like PANDAS just seems so unfair. It does sound promising that she responds to antibiotics. As far as literature on outgrowing it, most of what I have read does not get real specific. It does say that this is a childhood illness and in most cases does not carry into adulthood. We took our son to Dr. Murphy who has done a lot of research on PANDAS. She told us that we should expect to see him begin to get better in the late teens with complete resolution by the early twenties. She said some kids will be completely better by 17 or 18, while others may take till 21-22. She did give us definitive hope and indication that this would resolve with age. I'm not sure if that is exactly what you are looking for. I don't know of any research or studies that have been done on symptom resolution in regards to age. I think there is still so much emphasis on research for cause and cure right now. Let me know if you find any good articles. I think we would all like to know when we can expect to see some light at the end of this dark tunnel. I hope things turn around for your daughter. Keep us posted. Dedee

I am sorry to hear about your son. I am glad you found someone who could help and was knowledgable on PANDAS. My thoughts are that maybe you should not worry so much about the infectious disease guy and just focus on someone who treats PANDAS. I have been the ID route with someone who was supposed to be "the best", and they acted like I was crazy. The trick is to find a physician who has the knowledge and a treatment plan and can get you on the right path. There are several different antibiotics that could work for your son. Just because one stopped working doesn't mean there isn't something better that will help. There are different options available to you now. You need to be get information on them all, by physicians who specialize in PANDAS, and make an informed decision. Good luck. Dedee

Hi Amy, I can't say much about IVIG as I have no experience with that. I do have a PANDAS son on antibiotics who has twice been exposed to strep. This second time is a guess. Several weeks ago he started having severe tics after a year and a half of practically none at all. We think, but not sure, that he may have been around a kid at school at the same time this child had strep. I started him on 5-HTP, and my pediatrician agreed to increase (and change) his antibiotics for two weeks and see what happens (he cultured negative). I can't really say for sure which has helped but the tics are about 90% improved. When the two weeks are up we will go back to the regualr maintenance dose of amoxcillin 250mg twice daily. Seems like everything is trial and error with this illness. It is so frustrating. I hope things go well for your daughter! Dedee

Thanks for the replies. Michele, you are so right, that when they are having these burts of tics it is all I can think about. I keep running it through my head what could have caused this flare up, what should I do, etc. It seems to have gotten worse with some whispering that is repeatative. Although my son denies that he is having tics, it is pretty clear since they got to the point where it was 4-5 times per minute. Last night seemed to be a little better. I am hoping that the 5-HTP may have started working. We also started a full dose of Augmentin yesterday, that his pediatrician thought might help. Maybe he will be better tonight. Faith, the 5-HTP helped my middle son who was have a lot of anxiety issues. Constantly asking me if everything was ok. Lots of sleeping issues. No real rituals or anything. Mostly just needing constant reassurance. I started him on 50mg of 5-HTP and he seemed to get remarkably better in about 3 days. I still have him on it and he is a different child. I'm not sure if this is what has helped with my PANDAS son's tics. It may have just been a good evening yesterday. I guess we will see tonight. Blessings to all - Dedee

Gosh Pat, I have absolutely no suggestions for you, but I wanted to say how sorry I am that Gaby is having such a tough time. This has been such a hard battle. I do agree that when you add several things or change several things at once that it tends to confuse the issue. It's just always so hard for me to wait long enough to see if one thing is working because I want so badly to do something that works NOW! I haven't heard of the patches that you mentioned. What are they for and did you get them from your DAN? Praying that things settle down for you soon. Dedee

Linda, Thanks for your reply. So is it by prescription or by certain vendors? I am going to have to do something soon. He has added another tic last night, where he whispers something in a sort of rhythmatic tone. I am calling the ped today for guidance. Thanks again. Dedee

Hello Everyone, I am looking for input / opinions on some supplements. I have had my youngest son on 50mg of 5-HTP for a few months for anxiety and sleep issues. It has really seemed to help. However, he has been complaining of frequent headaches and I read in an article last week that some people will have headaches as a side effect of 5-HTP. It is really hard for me to remember exactly when the headaches began, but it seems as though it was around the same time as starting it (although I could be off). I have had his eyes checked, taken him in for physical, and no one can find any real reason. He gets them about 2-3 times per week. More than a nine year old should. I usually give him some children's motrin and it goes right away. The 5-HTP has made an incredible difference in his mood / anxiety, but I hate to think it would be causing these headaches. Has anyone else had any experience with this? Also, I had been looking into Kavinace for my oldest son (PANDAS), for his tics that have suddenly came back. I looked it up on the neurorelief web page but couldn't find any pricing or how to order. Has anyone had success with this for tics or is it used mostly for anxiety type issues? I appreciate any help anyone can offer. Dedee

Here is a link on 5-HTP. It is discussed more for OCD, and anxiety, but I seem to remember that some people have found it helpful for tics. I could be mistaken. I do know that it worked wonders for my youngest who is not (oficially) PANDAS, but has anxiety and sleep problems that had gotten pretty bad. Within a week of starting the 5-HTP he was a different child. I guess I was hoping for something like that for my other son. Probally wouldn't work the same for tics, but I figured it was worth a try. I get mine at vitacost online, they have resonable prices and I get my fish oil there also, so it is convienent. Dr. Raysahelian / 5-HTP Review Dedee

Well, I guess I should have known not to get to comfortable. This darn illness just doesn't let go. My son has been basically symptom free for over 18 months now, since tonsillectomy and starting daily antibiotics. I thought we had it licked. I noticed last month that he was having some head jerking tics, but they were mild and not anything that others would notice. It has gradually worsened to what I would call frequent. He is still very good at hiding it, and makes it look more like he is stretching his neck. Only one person in my family has noticed, so I doublt that school friends have picked up on it yet. He hasn't mentioned it and I haven't said anything, because in my experience it makes him so self-conscious that he does it more. His mood is still good, no behavior issues. He hasn't been sick this year, no strep in our house in probably 6 months (his brother). I am considering if I should bring the issue up and take him in for a culture / antibody levels. The other possibility was to first try some 5-HTP and see if we get any results with that. I just don't think it is related to illness, because he usually has associated behavior / anxiety issues when that is the problem. I had really good results when I used 5 HTP with my youngest son, but that was more for anxiety and sleep issues, not tics. Anyone have any thoughts? Dedee

Thanks for posting. Very interesting. Wish I could send it to all the doctors that are such non-believers

PMORENO, In response to your question on why do antibiotics work if there is not a current strep infection. I can tell you that many physicians told me that it simply would not work because my son did not culture positive for strep. My answer to them was that I do not know HOW it works, I can only tell you it DOES. My son was on and off antibiotics about four times while we were trying to establish this pattern. Again, not quite understanding how his symptoms could completely disappear so obviously within 48 hours of starting the antibiotic and come back within 48 hrs of stopping it. We kept a spread sheet and the results are so obvious. Even the teachers noticed. I am in the medical profession and realize that this does not seem logical. I only know what I live and see every day. When we took him to see Dr. Murphy, she was not at all suprised. She said they see it over and over in these kids and while it is not completely understood, they recognize it as a therapy. She said some hypothosize that it has to do with decreasing the antibodies that continue to attack the brain even after the infection is gone. My sons Anti DNase was over 3,000 at the time of our initial visit and it had been 6 months since his last strep infection, so he obviously has antibody issues. Just like so much with this illness, much can be observed and documented but not fully understood (at least not yet). That's why PANDAS research is so important. This board is a huge step in helping families struggling with a medical profession that is so often closed minded and misinformed. Thanks for all you do. Dedee

Hello and welcome, It sounds very much like PANDAS. Has your doctor given you that diagnosis? I can understand your concern about antibiotics for long periods of time. My son has been on Amoxicillin for about 19 months now. However, I can't even consider taking him off at this point. When we initially took him off, it was very similiar to your situation. Within 48 hours he would begin with tics again. Once we started them back they would stop after one to two days of the antibiotic. So we just wait, and try to be very aggressive with probiotics, etc. Sounds like you are doing a great job with his diet. The specialist that we took our son to said that it may be that he needs the antibiotic until the late teens. Although she did say that we could attempt to take them off every couple of years, but if there was a reoccurance of symptoms to start them back without hesitation. Evidentally you have some real issues with yeast. I'm am not an expert in that field, but there are many here who deal with that as well. Maybe they can help you out. Stick around, and you will get some great information. Dedee

Erica, I am sure you struggle with the decision. Especially since your child does not seem to be overtly affected at this point. The problem is, you have no way of knowing how he will react to future strep episodes. My experience has been that it ranges from mild symptoms to full blown explosive tics and behavior changes. My son went undiagnosed for years. His OCD was being treated with SSRI's and no strep prevention. Over the years he would develop strep and have a range of reoccuring symptoms. The worst happened two years ago, after he had suffered from four strep episodes over a four month period. The first three didn't cause huge issues, only an increase in anxiety, study problems, sleep issues, the usual. However two days into the last episode he got up one morning with abrupt onset of explosive tics. He had never had an issue with tics before this day. It was devestating for him and our family. Thank goodness we were able to get a proper diagnosis and treatment, and find support here. So in a way, the tics were a blessing in that it led us to a treatment plan that has made a huge difference for our son. My point is though that you can never predict how a child will react from each episode. It is frustrating to think of all my son had to go through for years before we got the proper diagnosis and treatment. I think it is easier to prevent the episode than to try to reverse the damage that can occur as a result. Each situation is different and we all make different decisions based on what we feel is best for our kids. Good luck with your decision. Keep us informed. Dedee

Amy, What great news! Such a wonderful time of year to enjoy your children. I am praying this lasts and continues to improve for your daughter. Hope you have a great holiday! Dedee

Can you tell me where I could purchase this movie. I have working contact with our "Director of School Nurses". I will purchase the first copy and let her view it to see if they can get more copies for the rest of the schools. This is a great tool to help our children. It is, so many times, at school that they suffer so much emotional trauma. Thank you for posting! Dedee

Yes, we use Amoxicillin for our son. He takes 250mg twice daily. He has been on this for about 19 months now and is doing very well. Dr. Murphy suggested that we stick with the milder antibiotic as long as it is working. If we start seeing any symptoms coming back we will switch to something stronger. We feel very fortunate that it has worked so well thus far. Keeping our fingers crossed. I hope you get good results. Dedee

That is awesome! I am so glad you have found something that is helpful. Sounds like an interesting physician. You said he is expensive. Does insurance not pay? It's great to hear of other resources out there. Thanks for sharing! Dedee

EAmom, Can you provide me with the link for the article above that you referenced. I would love to print the entire thing for my pediatrician. It's always good to have, in case I need it later. If you already have, I apologize. Thanks. Dedee

My kids have always complained of headache and stomach ache when they had strep. In fact my second son who isn't "officially" PANDAS but does show some tendencies has frequent headaches even when he isn't sick. Many children who have acute strep illness will also complain of headache and stomache ache. So that is very interesting that many of our PAMDAS kids have that as a long term complaint. Hmmmmm.... Dedee