Lisa1981 Posted January 19, 2011 Report Share Posted January 19, 2011 Good day to all, My daughter has been diagnosed with TS or Pandas 11 days ago and I don't know what to do. She is 7 years old (will be 8 in 3 weeks). The hospital first though she had TS however, the culture they took in her throat came back positive for a streptococcal infection. She was put on Apo Amoxicilin and was getting better (practically no tics). Last night, her tics came back (they never really disappeared but they were less apparent). Her face, her shoulders, her head all started to “react” again and she started the throat clearing thing (this one had stopped completely)... She is a strait A student even though she has an Oppositional defiant disorder (unless it was a major outburst, it could be controlled, just lots of repeating), she is now afraid to go to school (let’s face it, kids can be cruel) and she is also too tired to go. My poor princess can't sleep. Does anyone have any ideas or suggestion as to what I can do to help her… Will these go away when she finish’s her prescription, is there medication for this, does it sound like PANDAS, could it be something else... I do have an appointment with her family doctor but that not for a while . I’m at a complete lost since I’m at the starting point, Please help me, I’m willing to try anything for her. Link to comment Share on other sites More sharing options...
Fixit Posted January 19, 2011 Report Share Posted January 19, 2011 (edited) Seems like pandas to me.... you can slip back a little.and hopefully keep progressing forward...nothing is really a straight line around here... you may also have to try different abx..too soon to tell.. .with my new panda, tics remitted in 9 days as this was his first episode....we had 3 days tic free..and then got slammed with mono...don't know how long that one will take to remit...my doc told me months for mono....which i figured, but was nice to hear from a professional...but makes me extremely sad. ps..mono may have been the trigger all along...as he never had strep before, that i can note...and his first strep was 6 weeks prior to mono..and i think it can take that long to get igms and symptoms strep and mono have a high co-infection rate more in...if you have mono you have strep too...not so much the other direction Edited January 19, 2011 by Fixit Link to comment Share on other sites More sharing options...
momcap Posted January 19, 2011 Report Share Posted January 19, 2011 Hi Lisa1981, YES, this sounds exactly like PANDAS! Some of the more experienced people will hopefully chime in with some advice. I'm not much more than a newbie myself. But this forum is a great place to learn about PANDAS and find yourself supported by others who are living it too. Check out the first topic that is pinned at the top of the forum. It's full of helpful information. There are some great websites devoted to PANDAS - pandasnetwork.org and pandasresourcenetwork.org, to name 2. It is possible, if it was caught very early, that your daughter could be well again after being treated with amoxicillin. But, it's more likely that the healing process will be just that, a process. And it will probably require stronger antibiotics. Some have had success with Augmentin, Biaxin, Zithromax, among others. If amoxicillin doesn't work (and it sounds like it is already failing) then INSIST on trying something else. The same antibiotic doesn't work for everyone and it could be a trial and error process to find what works for your daughter. A knowledgeable PANDAS doctor is worth his/her weight in gold. If there is any way for you to connect with one of these experts, it may save you a lot of time, and get you to the right treatment for your daughter more quickly. My heart goes out to you and your family! Link to comment Share on other sites More sharing options...
peglem Posted January 19, 2011 Report Share Posted January 19, 2011 I'm a bit unclear. Apo? Did the tics come back after the course of amox was finished or while she was still on it. I'd be willing to bet the ODD is a PANDAS symptom as well. Here on some links to informational threads that will help you get started (all found on the "Helpful Threads for PANDAS" pinned at the top of the forum) http://www.latitudes.org/forums/index.php?showtopic=6265 http://www.latitudes.org/forums/index.php?showtopic=6266 http://www.latitudes.org/forums/index.php?showtopic=6688 If you need help finding a PANDAS savvy doc, let us know what area you're in and maybe we can help there as well. Link to comment Share on other sites More sharing options...
butterflymom Posted January 19, 2011 Report Share Posted January 19, 2011 (edited) = Edited February 3, 2016 by tampicc Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted January 19, 2011 Report Share Posted January 19, 2011 Good day to all, My daughter has been diagnosed with TS or Pandas 11 days ago and I don't know what to do. She is 7 years old (will be 8 in 3 weeks). The hospital first though she had TS however, the culture they took in her throat came back positive for a streptococcal infection. She was put on Apo Amoxicilin and was getting better (practically no tics). Last night, her tics came back (they never really disappeared but they were less apparent). Her face, her shoulders, her head all started to “react” again and she started the throat clearing thing (this one had stopped completely)... She is a strait A student even though she has an Oppositional defiant disorder (unless it was a major outburst, it could be controlled, just lots of repeating), she is now afraid to go to school (let’s face it, kids can be cruel) and she is also too tired to go. My poor princess can't sleep. Does anyone have any ideas or suggestion as to what I can do to help her… Will these go away when she finish’s her prescription, is there medication for this, does it sound like PANDAS, could it be something else... I do have an appointment with her family doctor but that not for a while . I’m at a complete lost since I’m at the starting point, Please help me, I’m willing to try anything for her. Hi Lisa -- Please check the pinned threads at the top of this forum; there is a ton of information there for you . . . much more than we can repeat here. In short, given the identified strep connection (how cool that the hospital actually went there for your DD!), PANDAS does seem like a very real possibility. As you read through some other threads here, I think you'll find that PANDAS can manifest not only as tics, but also as raging, so it's possible that even your DD's ODD is actually born of PANDAS, rather than an inherent part of her wiring. If she started to improve on the Amoxicillin and then began to digress again, it seems likely that the Amoxicillin isn't powerful enough to address the infection adequately. You'll find that most PANDAS families have greater success with treatment doses of either Augmentin or Azithromycin; you might ask your doctor about either of those. Inability to sleep soundly or fall asleep is also something of a "classic" PANDAS symptom; many of us help our kids with over the counter supplements such as Valerian Root and/or melatonin. Both are easy to purchase at your local drug store and seem to have no negative side effects. Once your DD is taking the appropriate antibiotic, her sleep will probably improve, but you might try adding one or both of those supplements in the meantime. Valerian root, we find, can help your child feel restful and fall asleep, and the melatonin will help sustain the sleep. And, finally, I would suggest that you pick up a copy of "Saving Sammy" by Beth Alison Maloney. Other than the individual stories you can find here, it's the most complete disclosure of what PANDAS can look like I've found, and it also covers how, initially, Sammy's doctors put him on penicillin and he seemed to improve, but then he fell back again. They eventually settled on Augmentin XR, which is a time-released formulation of Augmentin (Augmentin being a combination of amoxicillin and clavulanic acid). Many families have great success with Azithromycin, too, even though that's a different class of abx. But since Augmentin XR is time-released and Azith has an exceptionally long half-life, there's some theorizing that it's the duration of the abx in the system that facilitates the healing. Unfortunately, you're not going to get that benefit with amoxicillin since it's half-life is quite short. Good luck to you, and welcome! Link to comment Share on other sites More sharing options...
peglem Posted January 19, 2011 Report Share Posted January 19, 2011 *BAM* another thought just hit me...make sure nobody else at your house has strep (many people have asymptomatic strep so you can't just rely on symptoms) because if your daughter got worse again after improving it may mean she was re-exposed. Because PANDAS is caused by the antibodies to strep (rather than the strep itself), and even just exposure to strep causes the immune system to produce antibodies its worth seeing if other people in the home (who were exposed to your daughter's strep before it was treated) may be triggering a relapse. Link to comment Share on other sites More sharing options...
Lisa1981 Posted January 19, 2011 Author Report Share Posted January 19, 2011 (edited) I'm a bit unclear. Apo? Did the tics come back after the course of amox was finished or while she was still on it. I'd be willing to bet the ODD is a PANDAS symptom as well. Here on some links to informational threads that will help you get started (all found on the "Helpful Threads for PANDAS" pinned at the top of the forum) http://www.latitudes.org/forums/index.php?showtopic=6265 http://www.latitudes.org/forums/index.php?showtopic=6266 http://www.latitudes.org/forums/index.php?showtopic=6688 If you need help finding a PANDAS savvy doc, let us know what area you're in and maybe we can help there as well. , Apo is written before the amox on the bottle... Her tics came back while on the medication (she is still on it) She has to take 8.5ML 3 times a day. Finding a PANDAS savy doctor wont be easy in my area, but I didnt know they existed. I did read the threads and i did click on a few of the links but I find that hearing about people that are living it is sometime better then reading what a 3rd un-concerned party has to say (life experience beats text book) In reply to your second post (where you stated she might have been re-expose)...OMG, you are right... I'm thinking now that she may have been (I started the throat clearing....but I'm a smoker and I blamed it on that and the cold weather we have been having lately where I live) Thank you so much :-) Edited January 19, 2011 by Lisa1981 Link to comment Share on other sites More sharing options...
Lisa1981 Posted January 19, 2011 Author Report Share Posted January 19, 2011 Seems like pandas to me.... you can slip back a little.and hopefully keep progressing forward...nothing is really a straight line around here... you may also have to try different abx..too soon to tell.. .with my new panda, tics remitted in 9 days as this was his first episode....we had 3 days tic free..and then got slammed with mono...don't know how long that one will take to remit...my doc told me months for mono....which i figured, but was nice to hear from a professional...but makes me extremely sad. ps..mono may have been the trigger all along...as he never had strep before, that i can note...and his first strep was 6 weeks prior to mono..and i think it can take that long to get igms and symptoms strep and mono have a high co-infection rate more in...if you have mono you have strep too...not so much the other direction Thank you it's encouraging Link to comment Share on other sites More sharing options...
Lisa1981 Posted January 19, 2011 Author Report Share Posted January 19, 2011 Hi Lisa1981, YES, this sounds exactly like PANDAS! Some of the more experienced people will hopefully chime in with some advice. I'm not much more than a newbie myself. But this forum is a great place to learn about PANDAS and find yourself supported by others who are living it too. Check out the first topic that is pinned at the top of the forum. It's full of helpful information. There are some great websites devoted to PANDAS - pandasnetwork.org and pandasresourcenetwork.org, to name 2. It is possible, if it was caught very early, that your daughter could be well again after being treated with amoxicillin. But, it's more likely that the healing process will be just that, a process. And it will probably require stronger antibiotics. Some have had success with Augmentin, Biaxin, Zithromax, among others. If amoxicillin doesn't work (and it sounds like it is already failing) then INSIST on trying something else. The same antibiotic doesn't work for everyone and it could be a trial and error process to find what works for your daughter. A knowledgeable PANDAS doctor is worth his/her weight in gold. If there is any way for you to connect with one of these experts, it may save you a lot of time, and get you to the right treatment for your daughter more quickly. My heart goes out to you and your family! I didn't know I could insist on stronger medication... that’s a very good advice, you are right, it does seem to me like its failing or she has been re-infected.... ALL OF YOU have given me very good advice (changing medication, Valerian Root Etc). Based on what I read, I can link the ODD with PANDAS.As for the ODD, we are seeing a social worker and I have great support from her school. That has helped her behaviour her step father said to me last month that the change in her behaviour was unbelievable and he was proud of her (she would laugh at me hysterically when I tried to play wii with her and she got a certificate from the school for Exemplarily good behaviour). I'm very happy about what I have read and I will try to find a PANDA "specialist" (wont be easy where I live) I didnt even know they existed... You guys are GREAT Link to comment Share on other sites More sharing options...
airial95 Posted January 19, 2011 Report Share Posted January 19, 2011 Remember, all kids react differently to differnt abx - so you might have to try a couple to see what works best. That's where having a PANDAS savvy Dr (or at least a Dr. whose willing to learn) comes in handy. I would also suggest tracking your dd's symptoms and improvements, keep a journal, a log, something. I use an excel spreadsheet that is based on a system another parent on here (Buster) suggested. It may help identify blips in the road vs. when an abx is failing. In our case, it helped identify his sensitivity to exposure and lets us know when we might need to get the family tested again. Good luck! Link to comment Share on other sites More sharing options...
butterflymom Posted January 19, 2011 Report Share Posted January 19, 2011 (edited) = Edited February 3, 2016 by tampicc Link to comment Share on other sites More sharing options...
peglem Posted January 19, 2011 Report Share Posted January 19, 2011 I did read the threads and i did click on a few of the links but I find that hearing about people that are living it is sometime better then reading what a 3rd un-concerned party has to say (life experience beats text book) Just wanted to let you know, those threads are authored by Buster (with input from others on this forum) who is dad to a little girl who had life threatening anorexia due to PANDAS. He is careful to provide links to the science behind the info because that is often needed to get doctors to believe and help. I understand what you're saying, though, about wanting to hear actual experiences- just didn't want you to think Buster was an outsider! Link to comment Share on other sites More sharing options...
SarahJane Posted January 20, 2011 Report Share Posted January 20, 2011 Good luck on your journey. You are among good company here (even tho' none of us wish we were here). You mentioned that your dd is ODD. Does he have that dx? If so, as you learn about PANDAS you may think about how it manifested & if it showed up after an illness. (I'm with peglem on this one...it's likely PANDAS symptom & you might find other things she does that are PANDAS as you learn more.) But, if your dd is asymptomatic to strep (which I'm thinking she is since they did a swab to find it), it'll difficult to assign the mental illness symptoms to a physical illness when you didn't know it happened. IF you see a lot of symptoms at school but not always at home, it could be she's being exposed at school. But the symptoms could be seen both places too. I agree that you should find a doctor that's at least familiar with PANDAS if you can't get to one of the experts (they're mostly in the east & one in Chicago...not sure where you are, but if you give a general location someone here might be able to send you in a direction). Since your hospital (was she in the ER?) even uttered the word PANDAS, that's a good sign & maybe they can send you in the right direction. Note: SSRIs and other drugs are not particularly recommended for PANDAS...the kids usually do worse on them. While there's no cure, antibiotics, steroids, & IVIG treatments (or PEX) are typical treatments. And many of the kids have co-infections, which you'll find as you do more research here and on the other sites (or someone else will chime in with something else regarding this topic). Link to comment Share on other sites More sharing options...
TexasDad Posted January 25, 2011 Report Share Posted January 25, 2011 Good day to all, My daughter has been diagnosed with TS or Pandas 11 days ago and I don't know what to do. She is 7 years old (will be 8 in 3 weeks). The hospital first though she had TS however, the culture they took in her throat came back positive for a streptococcal infection. She was put on Apo Amoxicilin and was getting better (practically no tics). Last night, her tics came back (they never really disappeared but they were less apparent). Her face, her shoulders, her head all started to “react” again and she started the throat clearing thing (this one had stopped completely)... She is a strait A student even though she has an Oppositional defiant disorder (unless it was a major outburst, it could be controlled, just lots of repeating), she is now afraid to go to school (let’s face it, kids can be cruel) and she is also too tired to go. My poor princess can't sleep. Does anyone have any ideas or suggestion as to what I can do to help her… Will these go away when she finish’s her prescription, is there medication for this, does it sound like PANDAS, could it be something else... I do have an appointment with her family doctor but that not for a while . I’m at a complete lost since I’m at the starting point, Please help me, I’m willing to try anything for her. Lisa, from all the research I've done and our own experience, I would find a way to start high-dose antibiotics (details can be easily accessed online) immediately and keep her on it for at least one month, but not much longer if there isn't pronounced improvement. In that case, you really need to consider IVIG. I'm not a doctor and other parents here have more experience, so you'll have to take in all the information and seek the best medical care you can find. IVIG seems to have the most success when administered as early as possible. Link to comment Share on other sites More sharing options...
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