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Thanks, everyone. We did get the lyme re-tested via the Western Blot, and we are awaiting those results. My daughter has been on antibiotics, during the course of her life, far more than the average child. (for varying reasons, including several strep infections pre-tonsillectomy). Recently, for mycoplasm and lyme, she was on Azith and then Biaxin since the end of January, so it has been longer than a month. Again, with lyme, there are several different opinions on how long to treat. I remember my daughter having two tick bites - her PANDAS symptoms were present before them - however, I'm certain the co-infections in her system play a huge role in her behavior. Tonite, we all pretty much cried ourselves to sleep over here. I'm so fried. Her outbursts are SO angry, her words are really mean, and her physical strength is amazing for a 7 year old child. And things that used to help her are now becoming triggers. We take her often to a local farm (my husband's place of employment) where she has unlimited access to all the animals, streams, etc. But now she is becoming "obsessed" with it - ie. if we are there 7 hours, it's not long enough.. Lastly, I am just so at my wit's end (as it's summer) on how to deal with her and my younger daughter together. She's downright mean to her sister - not always - but much of the time. Again, this behavior subsided on Biaxin - it's just a tough drug on the gut - Our next venture is to see an allergist (Monday) to determine if these play a role. I find, from what I have read, that in many of the PANDAS cases, October is a bad month, and May and June are problematic. This definitely coincides with allergy seasons. There may even be something at the farm which is not good for her (though overall that is her place of refuge..) Thank you all. I'll keep everyone in my thoughts and prayers. Noelle

Hello, everyone. I'm updating (and venting) about my 7 year old daughter. She has seen Dr. T a few times now and was on Biaxin (successfully) for about 3 months. In mid May, I got worried about Biaxin, as it's not a favorable choice for long-term treatment, and I weaned her off. It doesn't take long for things to go haywire, does it? First, it's just an occasional rage episode, and then, as time goes on, things just get progressively worse, until you realize this poor child needs treatment. Here's the frustrating thing - Some doctors say antibiotics, some say IVIG, some say IVIG doesn't work long term, and some say antibiotics don't work long term. So, at the risk of making her a guinea pig for research, I'm left wondering... WHAT WORKS???? She tested positive for mycoplasm, lyme, and had high normal strep titers. We recently ran the bloodwork again, looking for a possible Hyper IGM problem, which may contribute to a weakened immunity. So, without a doubt, her symptoms are illness-related. Yet my husband is now pushing for Tenex.... I'm not sure if I agree. Why mask a problem you are trying to solve??? It's so easy for these docs to write scripts.. but they are not the little bodies these scripts are affecting.. I'm so frustrated - I wish there were a doctor out there who could be "on call" for discussion. So few even know their stuff with this - to ask for that, I know, is out of the question. My daughter's pediatrician, at her most recent appt, spent most of the time arguing with me over Dr. T's bloodwork orders, saying they were unneccesary and costly (we needed her to ok them through our insurance). How can you put a price tag on a child's health? I'm ready to find a new pediatrician for her, that is for certain. Just feeling sad.. My daughter is ruling the roost again (really her illness is) and it's turning us upside down. She lashes out at everyone, without cause or good reason, as if on a rage cycle, and behaviorally, I know she can't help this, but how do you ignore the scratch marks on her 3 year old sister, or her throwing phones, or kicking and biting? I am left with my hands tied, my husband angered, and my daughter worn out. I think the next antibiotic (for mycoplasm should her levels be high) may be Azithro.. But for how long, and what, if anything else, should I be looking into???? Thanks, and best wishes to everyone else who is living this ######. Noelle

My daughter is a young second grader, having only turned 7 in September of 09. She has missed just shy of 30 school days this year from PANDAS related problems. She just took her PSSA tests, and scored in the top 3% of the nation! And she is always bringing home great grades, despite focusing minimal time on homework. Yes, I think you are on to something here..

I have just read my sister's post here, and am writing through tears. I have seen firsthand the heartache this family has gone through because of this illness. And, as Katie gets near adulthood, there is less and less "control" any of us have over her decisions. When she is in this distorted state, her perceptions are so twisted, and it is nearly impossible for any of us to get through to her. She didn't find comfort with my family.. she's back home - She's really fighting going to Dr. T on Sunday.. and yet she knows she needs help. But the defiance and the rage and the walking on eggshells through life to keep her from cracking.. it's maddening for everyone. And to top it off, the medical industry should be ashamed of itself for what a poor poor system they have in place for a crisis situation! So you are left to your own devices, you pray and you pray, and you hope that somewhere out there, God hears. My thoughts are with my beautiful sister, her family, and all of you going through this.. May the road to recovery rise up to meet us all!

My local pharmacist has been very helpful with any over-the-counter meds for my children. I'm sure one can help you with that. Also, my 3 year old little girl (her 7 year old sister has PANDAS) has been acting strangely for about a month or so. Her tantrums, when they happen, are inconsolable, she has become increasingly agitated and defiant, and she has a really fine raised rash on her cheeks (hardly noticeable). I am wondering the exact same thing as you - is it her terrible 2's coming late, or is something more going on? I don't want to ignore it, and I'm not yet ready to label it. It doesn't hurt, though, to get some blood tests done. Good luck!

My local pharmacist has been very helpful with any over-the-counter meds for my children. I'm sure one can help you with that. Also, my 3 year old little girl (her 7 year old sister has PANDAS) has been acting strangely for about a month or so. Her tantrums, when they happen, are inconsolable, she has become increasingly agitated and defiant, and she has a really fine raised rash on her cheeks (hardly noticeable). I am wondering the exact same thing as you - is it her terrible 2's coming late, or is something more going on? I don't want to ignore it, and I'm not yet ready to label it. It doesn't hurt, though, to get some blood tests done. Good luck!

My daughter flares up right before a fever onset, and then, during fever, she is very very calm.. Within days after, her symptoms flare up. I noticed that same rash on her stomach when she was about 2 and 1/2.. Could that be a strep rash, I wonder? At the time, my pediatrician said to take Motrin for it We've since changed docs. Currently, my daughter (now 7) is on Biaxin and doing just wonderfully. She's being treated for micoplasma and lyme, which are co-contributors to this illness. I'd put my money on everything you describe as PANDAS. Try a course of antibiotics, and take notes on behavior. Don't lose heart if first antibiotic doesn't cut it. You'll read here that most people have tried a few different ones before they find the right one for their child. Good luck!!!

Getting back on antibiotics for lyme while you get in to see an ilads doctor as soon as possible is the best thing to do. Amoxicillin is great for lyme but it is not enough for co-infections of Bartonella and Babesia. Where there is lyme there is often Bartonella or Babesia. Bartonella causes neurological symptoms that can look like PANDAS. Babesia can also cause neurological symptoms. The tests are not reliable for the co-infections so it is critical to have your child evaluated by an ilads doctor. Go to Ilads.org and email the contact person, Barbara Buchman, and request the name of a local doctor. Feel free to PM me if you have any other questions or want my ilads doctor's name. Dr. Fallon would be great too if you can get in soon. Thank you so much! Can you tell me, also, what dose you think is an appropriate one? And, is it ok, IYO, to start right after she finished the Biaxin script? I have a script of Amox. waiting, and I will pick it up today. Also, can you tell me if Lyme tampers with the immune system? It's looking like my dd may have something called Hyper IGM, and I'm wondering if her antibodies and immune system became further compromised due to Lyme, as opposed to it being a separate issue. Either way, I'm looking at strep being the first problem (not so much now since she had her tonsils out), Mycoplasma, Lyme, and possible Hyper IGM. You'd think the docs would get this kid in soon, huh? Thanks to you and this forum, at least I can get pointed in the right direction. As for the dose of Amoxicillin, it depends on the child's weight and age. My kids have taken between 3 and 4 400 or 500 mg tablets a day. Yes you can start it immediately after taking another antibiotic. You do not want to give the spirochetes any opening to multiply in the body so getting on the antibiotics asap is important. Don't forget to give your child probiotics though-they are just as important and you need to take enough of them. Lyme definitely compromises the immune system. I don't know what the hyper igm is. Some LLM doctors are booked for a while so hopefully you can get in to see one soon. You should read Cure Unknown and order the Under Our Skin documentary from underourskin.com. Between the book and the movie you will learn a ton about Lyme. It helped me a lot to read that book when my son was first diagnosed. The documentary was nominated for an award. Again, many many thanks to you for such great information. Dr. T called yesterday - he informed me that Biaxin does, in fact, treat Lyme - I was not aware of this, so, it's my mistake to think it wasn't a drug that can be used for it. And my daughter did so well on it for Mycoplasma - her rages/ocd etc. almost totally went away - that he's starting her up on that. For sure, I'll still see a Lyme doc, but also I'll need to get in with an immunologist. I'll still check out that website again, though, and definitely look into those books. Hyper IGM basically is when the immune system IGM's are high, and IGG's are low, when the reverse is supposed to be true - I guess one is not converting to the other - I'm still a bit confused myself, but I know that in boys, it's a very very serious condition, and in girls, much milder. But I'm wondering if between the Mycoplasma and the Lyme - if these illnesses caused the immune system to be compromised, or the reverse. I'll keep you posted, and many thanks! Noelle

Thank you! I'm a bit confused on that site looking for docs. However, I am close to Geisinger Danville, which is a good hospital. But getting in soon is where I need my ped or Dr. T's help!! I will continue to look on the site, and pm you with any questions. Noelle

Getting back on antibiotics for lyme while you get in to see an ilads doctor as soon as possible is the best thing to do. Amoxicillin is great for lyme but it is not enough for co-infections of Bartonella and Babesia. Where there is lyme there is often Bartonella or Babesia. Bartonella causes neurological symptoms that can look like PANDAS. Babesia can also cause neurological symptoms. The tests are not reliable for the co-infections so it is critical to have your child evaluated by an ilads doctor. Go to Ilads.org and email the contact person, Barbara Buchman, and request the name of a local doctor. Feel free to PM me if you have any other questions or want my ilads doctor's name. Dr. Fallon would be great too if you can get in soon. Thank you so much! Can you tell me, also, what dose you think is an appropriate one? And, is it ok, IYO, to start right after she finished the Biaxin script? I have a script of Amox. waiting, and I will pick it up today. Also, can you tell me if Lyme tampers with the immune system? It's looking like my dd may have something called Hyper IGM, and I'm wondering if her antibodies and immune system became further compromised due to Lyme, as opposed to it being a separate issue. Either way, I'm looking at strep being the first problem (not so much now since she had her tonsils out), Mycoplasma, Lyme, and possible Hyper IGM. You'd think the docs would get this kid in soon, huh? Thanks to you and this forum, at least I can get pointed in the right direction.

Hello. I have had a recent Western Blot test done on my daughter and she has tested positive for Lyme. She has definitely had two tick bites over the past 2/3 years, as she is outdoors often and loves hiking.. She never developed a rash, or had any joint pain, high fevers.. nothing of the sort. We had suspected PANDAS prior to the bites.. (no one was listening at that point) but I do remember her exaccerbations got worse shortly after the first bite. I'll have to look through medical files to get more info. on dates for you. Dr. T requested the recent bloodwork - Said he'd get us in with Dr. Fallon - I cannot get hold of either of these docs since. My daughter was treated by him for Mycoplasm with a month's course of Biaxin - (just finished) she did well on it. But I'm scared to death of the Lyme. My pediatrician thinks a course of Amox will work - that is a joke to me - since my child has been treated with Amox and Augmentin many times (for other reasons) since last bite. Wouldn't it have coincidentally been effective against the Lyme? I could really use some input here. Thank you so much.. Noelle PS Sorry I don't have the bloodwork in front of me - she tested 3-10 negative on first part of test, and 2-3 positive on second - hope this helps. Thanks!!

Oops! Sorry for the double post! It's late, and I'm tired!

We also just finished a 30 day course - 500 mg daily - for my 7 year old. She was greatly improved, especially in her rages, which all but subsided. Through the Western Blot we learned she also tested positive for Lyme - now I don't know where to go from here. The pediatrician suggested amox, which she called in by phone - I don't think that will do anything. Add to it, my dd has been bitten twice by a tick (she spends alot of time outdoors), but the last bite was well over a year ago. Since then, she's been treated with amox. and augmentin (for other things). If it had inadvertently worked on the Lyme, would she still test positive? I'm so confused. Also, re: Dr T - he called us today, and I missed the call!!! I think the poor guy is really overwhelmed, so we need to be patient. But it is difficult when we aren't getting answers from any other doctors.. Hopefully, he'll get some help in his office (think he may have done that already) and get us all situated. Good luck.

We also just finished a 30 day course - 500 mg daily - for my 7 year old. She was greatly improved, especially in her rages, which all but subsided. Through the Western Blot we learned she also tested positive for Lyme - now I don't know where to go from here. The pediatrician suggested amox, which she called in by phone - I don't think that will do anything. Add to it, my dd has been bitten twice by a tick (she spends alot of time outdoors), but the last bite was well over a year ago. Since then, she's been treated with amox. and augmentin (for other things). If it had inadvertently worked on the Lyme, would she still test positive? I'm so confused. Also, re: Dr T - he called us today, and I missed the call!!! I think the poor guy is really overwhelmed, so we need to be patient. But it is difficult when we aren't getting answers from any other doctors.. Hopefully, he'll get some help in his office (think he may have done that already) and get us all situated. Good luck.

So sorry to hear your daughter was so ill. Glad to see she is perking up. Funny you should mention the toe thing.. What is it she does? My daughter talks about feeling the need to curl her toes quite a bit - and is pretty fussy about shoes. I was just wondering if its a similar behavior. Also, did you get any immune bloodwork done? My daughter is sick frequently, too - we are looking at a possible immune suppression, but need more bloodwork to pinpoint it. I hope your little girl is much better tomorrow. All positive thoughts coming your way! Noelle

Mycoplasm seems to be a rough one to treat - Biaxin is the only effective treatment we've seen with our daughter. And with this being her last bottle of it - honestly, I'm not sure what to do next either. I've heard that steroid bursts can increase vocal tics and tourette's like symptoms, and this could also be the "getting worse before getting better" that alot seem to talk about. We haven't done steroids, so I don't speak from personal experience.. I hope you get some answers from doctors soon. Alot of us are waiting on callbacks from Dr. T (me included). Maybe these docs are just getting really inundated? Leaves us in the dark, though, for sure. Good luck. Noelle

Your reply brought tears to my eyes - I currently have a 7 year old dd - and her three year old sister has witnessed far too much on the rage end. While we try and keep one from the other during rage episodes - (which are currently in remission thx to Biaxin and Dr T.) sometimes, being alone with both, it's near impossible. When my husband is home in the evenings - it is more tolerable. Strangely enough, though I worry so much about my younger daughter and her perspective on things - she is absolutely crazy about her big sister, and just tries to correct her if she says something "mean". Sometimes the innocence and love of the little one brings my oldest daughter out of a rage, and into a fit of laughter.. I guess God knew what he was doing here... Good luck.

tired mom, About the cursing is it intentional? That is or was our #1 tic .Is your ds tics or anger? Melanie I would have to say it stems from the ocd and a high level of anxiety. She has not used foul language since starting Biaxin. <Melanie - My daughter (7) also has foul language usage and anger - also very controlled under recent script of Biaxin.

I AM SO HAPPY FOR YOU!!!! That makes me ask a question..... Could it be a progress if things seem good early in the day but slide as the day goes on? Early parts of the day can seem so good...then comes the afternoon or evening and things seem to ramp up....or is it just me hovering over him??? OH..he had a filling that fell out yesterday....and the hole in the tooth is black.....going to the dentist at 1pm....any thoughts??? Could this have been the cause of all this cr@p? And why, as the year went on he was getting worse!!!! It's the first molar....he's 10....should i just have them or let them pull it???? TEETH TEETH TEETH!!!!!

My daughter has been on a bit of a backslide since I posted last. Yesterday, she missed school, and had a meltdown in the morning. She remained agitated through the afternoon, but by early evening, was actually in good spirits. Today, she had a REALLY good morning - no issues - and is back at school. Even through the bad days (and yesterday, I admit, I did break down and cry), things are not near as bad as they were pre-Biaxin. So I KNOW it's working. I remain hopeful. I just thought I'd post some good news!! Have a great day, everyone!! Noelle

I used Buster's chart idea and made it my own. I listed her typical behaviors and I rate them every day on a scale of 1-9. then I use excel to see them on a line graph. It makes me feel better and its quick once you set it up and play with it for a bit. Glad to hear things are picking up for Noelle. I was wondering if there is a post somewhere with a suggested chart - or where I might find Buster's chart. I am also wondering if any of your kids have allergy triggers. Mine does and I know I we have bad days in the spring when the pollens first start and in the fall with the molds. Also have bad days after certain foods. I am wondering if anyone is charting these and seeing these as triggers. - Thanks I'm not familiar with Buster's chart either - maybe someone can get us in the loop! BUT - very interesting you should bring up allergy triggers. My daughter spends alot of time at a dairy farm on the weekends... and, she is usually really symptomatic upon coming home, and for a few days following. This weekend was no exception - she went yesterday to the farm, and today, she was about a 5 on a scale from 1-10. My hunch is there is some allergy trigger there, in the barns, with the cows, or in the ponds.. I just don't know for certain.

I haven't read the book, but, boy, do I live what you are saying! My daughter, 7, has alot of morning issues - esp. with clothing, ie. socks being "glumpy" - and shoes - she has worn the same pair of crocs just about all year. And we are often late to school. Her dad's been taking her (thank God - she is a bit better for him) but if he gets stressed that he'll be late for work, that sets the ball in motion! This morning I had to take my daughter - and she didn't even make it there. We were running late, and I took her for a ride beforehand to calm her. But when we arrived at the school, she had a major meltdown. I thought about my options, even thought about getting someone from the school to take her in. But, when your child is in the fetal position screaming that they will die if they go to school, what do you do? So, I turned around and came home. Second grade isn't as important as my child's health. BUT, at the same time, we want to teach our children coping skills - something they will certainly need later on in life. (Add to it you don't know when they are testing our parenting weaknesses!) These kids really have a rough time with any onset of stress or deviation from routine. We also often try to tiptoe around certain situations, anticipating in advance what may be a trigger. But sometimes you just don't know what's going to set her off. Good news is, after she came home and rested, she had a relatively good day... Wouldn't it be nice if they could just say "I'm really really tired, Mom. Can I just stay home?" I feel for you, and I may just get that book! Good luck!! Noelle

That sounds like my husband! lol But, seriously, my child, though not symptomatic at school, when she is in that state of mind, absolutely will pick fights with me, or anyone else around her, and, if something else is going wrong at home, she most definitely will feed into the negative. And when she's not symptomatic, her reactions and responses are much much different. So I can see where you are coming from!

Thank you for your concern and words of encouragement. Today was better - she did alot of fun things today and only acted out while she was winding down from her day. BIG difference from yesterday. I'm keeping a daily chart here, and will keep everyone in the loop. Thank you!!!!