reactive

This makes me mad too. But, if this physician has her own practice, she bills though her own business. I will ask some of my peeps in the business side of my clinic how this can be challenged...if a patient does not pay their bill, they can be sent to collections...

OK....I guess as someone else has said maybe this will just have to be a learning experience...but WOW. Traveling three hours and not seeing the physician? I do not understand. Did you ask when you were all there where is the doc and ask why you did not get to see her? Now, I am a nurse practitioner (OBGYN) and I also noticed on Dr. T's site that he has a nurse practitioner...it may be his wife or they may be related but I'm not sure as they have the same last name. But it seems to me, in many specialty practices the NP can be used to get the history and even initial exam, ect. but then the doc still sees the patient. Now, in my practice, I am pretty independent, see my own patients, and bill for my own services. But what I do is not exactly rocket science, per se, I see uncomplicated patients and any whiff of a big problem I refer out. State laws and insurance issues dictate a lot of that. If this place did not take insurance, and depending on the laws of the state, the NP could absolutely bill for his or her services. Medicaid and Medicare give NP's provider numbers. Private insurers vary, some will credential and let the NP bill directly; and for those that don't the practice bills under the doc even though the doc did not see the patient ("incident to" services). Lesson learned, you need to know what you are paying for. If an insurance company is involved you have more clout after the fact, in a way, to appeal your charges. With this situation, you may have to just pay...I have worked in health care for a long time so I can imagine if this were me I would be demanding to see the physician at that first encounter...I can picture how hot headed I would be if this happened to me...and I am a NP. Oh, and by the way, Medicaid and Medicare reimburse NP's at 85% of the physician rate. Seems to me you should at least be getting a discount!

does your child have tourette syndrome? if not, then the burst should hopefully not cause a tic increase. it is the increase in TS people that is the concern, or in those suspected as possible TS Well...I think our situation is a little "complicated" . I have earlier posts on here. Lets just say, my ds9 had a HUGE onset of debilitating OCD, tics, hallucinations, joint and leg pain, staring, spitting, arms waving, jumping and humming and arms flapping, ect at age four. He was completely and utterly incapacitated for about 6 weeks, could not go to preschool. It then took several months for symptoms to go away. Huge onset was 2 weeks after respiratory infection but at that time rapid and culture for strep neg. ASO only test done by neuro at onset. This ASO was neg. So, we were told not PANDAS. Our neuro says TS. Ever since then long hx strep, recurrent strep, tonsils out, strep in family, over last 5 years sx increase with strep or exposure...he does great in summer and bad Dec thru MArch. So now we are looking into PANDAS again. I have autoimmune reactive arthitis and had many strep as a kid. I realize my ds may have TS but no one can explain to us why if that is the case why so severe at age four and why the joint and leg pain and had to be carried at times back then. So I am not sure if he is plain TS. He has many PANDAS symptoms but since the strep was not found at age four it has been discounted by our neuro. My gut tells me more is going on but I could be wrong. My son was sick with a virus again 2 weeks ago, neg fro strep again, my mom watched him for us one day and 2 days later she got a really bad impetigo (SP?) rash. Stuff like that happens to us every now and then. ????????

Thanks for you quick reply. It is such a hard call, for us anyway. I don't want to make my son worse but I also think he may have PANDAS and I feel I may never know unless I go this route....Dr. K would probably have us do it...I would never spend thousands of dollars on IVIG without a burst...Dr. K would probably not order IVIG without the burst I imagine? One option I was thinking of is doing the burst and stopping it if tics exploded and not keep him on the rest of the days. I still am unsure -now I am scared...I was convinced now is the right time for a burst that is why I called the doc earlier today for a rx but now that I read these posts I'm not sure anymore. I think I was thinking if the tics worsened some oh well we will deal with it; but the possibility of them increasing for a year...I did not consider that.

Chemar: Can you elaborate more on your husband? When did he do his burst? And how long has he been worse? My ds9 has increasing tics over last few days. I am struggling with this also and just earlier today called the neurology office to ask for a steroid burst. I don't know if they will give it to him. We were given a rx for risperdal on Friday 2-12-10 but did not yet start it. Over the weekend my ds9 tics increased even more and last night they were really bad. He was crying about his head bobbing and his eyes darting. We have a lot of PANDAS symptoms too...and plan to see Dr. K. I thought now would be a good time to do the burst to use it as a test before even seeing Dr. K. Two things happened this weekend. First, his last day of Omnicef for an upper resp. infection was this past Sat. but on Fri night we started veramyst from the allergist which I think has a little steroid in it. I stopped the veramyst after Sun so he got that for 3 days, just in case that was increasing the tics. But after no antibiotics he is getting a weird "strep smell" again...our family doctor smelled it on him in Janauary and gave him antibiotics for it even though rapid strep in throat was negative (I have a prior post on here about that). So I don't know if tics increasing is due from veramyst, stopping the antibiotics or stress (going to doctors and talking about tics seems to increase tics) I want to do the burst as the test to see if I get info from that for Dr. K. But I don't want to make him worse permanently...I can't tell from your post about your husband how long after the burst did symptoms worsen...are you saying it is permanent? I don't want to mess up here and make him permanently worse if he is TS.

It is standard of care to treat women in premature labor for group B strep. So a lot of early babies get treated. But if a c-section is for another reason, emergent,ect. they don't always have time to give antibiotics. Then the pediatrician or neonatologist decides if baby gets tested and treated. It depends on the circumstance. I think it is nice that your doctor tested you at your physical when you asked, but knowing you were positive did not help you, did it? When tested, as many as one in four women will be positive for group B strep. It can also show up in a urine culture. That is why, in my earlier post, I mentioned that it would be hard to make a connection to PANDAS. By default, as many as one in four PANDAS kids would have a positive mom when they were delivered. And that is if they were tested, as you mentioned. And also, you cannot account for the negative tests that may have actually been positive moms, as in the earlier post in this thread about the mom who had a baby develop meningitis after her negative test. My goal in even posting on this thread is helping everyone see that every branch of medicine has its own research and protocols; in this case obstetrics (which I happen to know more about than PANDAS). I want every parent of a kid who may have PANDAS to know what they are talking about if they bring this group B strep issue up at any doctor's visit. With the different strains of strep, and differences in virulence, some patients with recurrent strep would need to be under the care of someone in infectious disease in difficult cases; it seems to me. And, if you think the doctors you have talked with so far don't know much about PANDAS, I will tell you most providers in OBGYN have probably not heard of it.

Research has shown for a very long time, since the late 1980's and early 1990's that newborns can get meningitis and or sepsis from GBS at delivery in the first month of life. So, your story is not unusual. See my other post about the transient nature of GBS. You probably had it, but were negative when your test was done. See ACOG for info on GBS in pregnancy.

[/quot OBGYN's go by the guidelines from ACOG (American College of Obstetricians and Gynecologists). They have a website...check it out. Scheduled c-sections do not require antibiotic for GBS, but if you are in labor and then get a c-section that is a different story. However, some physicians and midwives may order antibiotics anyway; that happens. The protocol for GBS prophylaxis is actually a little more complex than just a dose...where I work you need 2 doses 4 hours apart and needs to be completed before delivery...so many hospitals treat baby if all antibiotics are not in.

I just want to add again, that rectal and vaginal group B strep can be transient; that is why it is checked at approx. 36 weeks. Which means, if you are positive at 36 weeks you probably will have it, but if negative at 36 weeks you could be positive later and it is not caught. They want check for it late enough to catch a positive, but no too late that you will deliver before the test result is in...that is why they pick 36 weeks. Even though I personally doubt a connection, even if there is it would be hard to know in every case due to the transient nature. If you are negative at 36 weeks and don't deliver until 40 or 41 weeks, you would not know with 100% certainty you did not have it. I myself, personally was negative with ds9 who may have PANDAS but positive in ds5 with no symptoms of PANDAS. IV antibiotics are not given for the newborn benefit in +GBS women for scheduled c-sections...if you get antibiotic in the IV during your c-section it is for your benefit not the baby.

OK, I feel like I would like to chime in here too. I respect Diana's comment, she knows so much. On the other hand, my ds9 is one of those kids that as you say, does not fit into the "neat little box". My son had such a severe and debilitating onset of symptoms at age four, my husband and I both had to stay home with him for weeks and at times we had to send my infant son to the grandma. I did not do any scoring as you say, but I would call that a sudden onset. At the time, when I looked back, he did have a tic here and there. But, I think it was me being observant, to be honest and not to toot my own horn. But I know a mom who had no idea her son was having tics until I described what my son was doing. Our neurologist at the time suggested PANDAS (which is where I learned the phrase), but then later stated he could not have it as his ASO was not elevated. But, they did not check him for strep as he was checked for strep at the ped office 2 weeks prior. I really feel his strep possibly could have been missed. We have had a lot of strep in the family over the years. Heck...my son was at my mom's 2 weeks ago when sick and 2 days later my mom came down with impetego. How does a 60 year old woman come down with impetego??? She had never had it before... Our doctor is understanding and gives my ds9 antibiotics in 10 day courses liberally, but we are not on daily. I want to see Dr.K first. However, back to when my son was four....anytime I question whether or not my son could have PANDAS, and that happens a lot as I am just not SURE, I remember that my son, at his worst, also had horrible leg and hip and knee pain...I would have to CARRY him to the bathroom to pee...it would come and go just like the other stuff, the staring and being "gone" ect. And so, whether strep IS the cultprit or not, we can sometimes find it and sometimes not, you can't tell me a kid with "regular" OCD and tics would get joint pain. As you can see , we are in the opposite side where we can pinpoint the sudden onset but could not find the strep at the time. So another thing to consider. Also, I would like to point out in our case, that it did take a few months at age four to get back to baseline as this was 5 years ago and did not get antibiotics or IVIG or ANYTHING. So, while I admit until I see Dr. K and he can say for certain this is PANDAS, if it is or was, my son got back to functional level on his own but it took a few months. I don't want to offend anyone here who has done IVIG, but I do see a timeline with some kids who did IVIG and got better, back to baseline, and those kids' timelines match my son without the IVIG. So I do wonder if some kids would have improved on their own without it. I am just playing devil's advocate again as this is a new science. I just wonder about it. My son does great in summer but not so good December thru March. One of the mom's of a daughter in my son's class told me on the phone last week her dd had strep last week and she can't get rid of it, she has had it X3 over last few months and her tonsils are already out. This is a kid my ds9 is in class with five days a week. He is really ticcing and obsessing now...neuro gave us a Rx for risperdal on Friday but I'm not going to give it to him. Sorry this is so long but I wanted to add.

I feel like I should reply to this. I have worked in OBGYN for the last 19 years, the first 7 as a labor and delivery nurse and the rest as a OBGYN nurse practitioner. Group B strep can be found in the vagina or rectum of women, pregnant or not. It can come and go; you can be positive for one pregnancy and not in another. It is standard practice to test for group B strep about a month before delivery. If the woman is negative, no further action is needed. If the woman is positive, it is recommended the woman get antibiotics by a standard protocol before delivery; if the woman labors too quickly and all the antibiotics are not in, most hospitals then treat the newborn. Group B strep can cause sepsis in a newborn; babies can get septic and die very, very quickly. The chance of sepsis and newborn death is low, even with positive strep test, but the antibiotic use in all positive women at delivery has slashed the numbers of newborn morbidity and mortality. It is a risk benefit thing. This form of strep is not the same strep that causes strep tonsillitis or step throat. Even though I am a PANDAS believer, and think my ds9 may have PANDAS or some form of PANDAS, I do not see the connection to rectal/vaginal group B strep.

One would think that this plasma could not be used now. I remember a news story awhile back about something similar happening with H1N1 vaccines and the truck they were in being stolen; and since the controlled environment could have been compromised, they could no longer use them...

Harmony: How do you test for a strep infection in the sinuses? I really want to know because I think that may have happened to my ds9 last month; when our doctor gave him antibiotic for strep "smell" and negative throat culture. You could smell the strep on him, he continually has sinus snorting and such, hard to sleep ect. But last month was worse and the smell. The smell went away after antibiotics.

This is more of a question really. I have tried to figure out from prior posts but did not find...If a child has been dealing with PANDAS symptoms for a long time, as in our case like 5 years, could it have been from mycoplasma all along? Are we saying that a child could get mycoplasma and it was never caught and treated so that is why they continue with symptoms off and on? And if you test now, it will show past infection?

Our experience: ds9 with explosion of PANDAS like symptoms age 4. At age 6 had recurrent strep throat X8 so scheduled the surgery; ended up with 9th bout of strep throat before tonsillectomy done. He still got strep throat sometimes and as he is getting older it seems to be less...so having strep less has given him less PANDAS symptoms. So, I think it indirectly helped. I feel he would have been worse if it was not done, but I realize I have no way to prove that. When I spoke to the surgeon about my son I presented him as OCD/Tourette's/PANDAS. She told me that even though you can still get strep after tonsils out, and even though not everyone believes it PANDAS, it was her experience that these kids did much better after the surgery; and that if it were her kid, she would do it. And those surgeons do a lot of these; they crank them out!!

Buster knows more about Kurlan than I do. But I did contact him by email 5 years ago when my son then age 4 was in crisis. He seemed helpful at the time, but I did not ask him about PANDAS only OCD stuff. I had been searching for a place to take my son as I could not see a psychiatrist for 8 months at that time, and as I said, we were in crisis (think Beth Maloney). I ended up finding a psychiatrist in Pittsburgh. My opinion; Kurlan is a mainstream psychiatrist who does not feel PANDAS exists. I think he feels strep could trigger OCD and tic exacerbation, but I don't think he believes it could CAUSE it. This is from what I have read about his work. He is the most vocal and well known physician trying to "debunk" the strep connection. So, think of Swedo on one end, Kurlan on the other, and everyone else kind of in the middle.

Hi Josh's mom: I replied to your first post this past weekend. I still stand by what I said before about getting to one of the specialists if you can; even if you need to pay for the visit yourself. If you can verify the diagnosis...and get somewhat of a plan, you could take that information back to your physician who first mentioned PANDAS and collaborate on the follow up care. I know it is easy for me to say, pay over $300 for a visit, but we have dealt with a lot of stuff over the last 5 years and I have really good health insurance, but some of my son's issues have not been covered, as I said in my earlier answer to your first post. Your insurance may not do this, but my insurance will not cover anything related to developmental delay; and if yours is the same, and since your son is 6, you may have some of those issues too since he is in early elementary. That $300 or so visit with one of the big three COULD save you a lot of money in uncovered visits and copays later...trust me. I have not yet seen Dr. K, we are preparing, but this is what I have been doing: I have been securing all old records (you may not have as many since your situation is recent). I have tried to read as many posts on here and info on PANDAS network. Dr. K wanted my ds9 to have antiDNas B titer done as he has never had in the last 5 years, he has only had 3 ASO titers; one elevated and 2 not elevated; so I got the ped to order it and had it drawn. I also have an appt with the neurologist who first told me about PANDAS to let him know what we are doing. Also, after reading all the posts and PANDAS network I am taking my son to see an immunologist this Friday and I found a list on a prior post on what labs to ask for. The immunologist is the only specialty we have not yet seen. I am doing all of this ahead of time before seeing Dr. K so I have everything I need and am doing all this with providers under our insurance and having labs done at our facilities. It should make our visit with Dr. K more complete. Imagine if you do go to see Dr. L and she orders all of this stuff; and then she wants you to come back again for follow up later or a phone consult. It could save you time and money to do a lot of this ahead of time. Can you see the doctor who first told you of PANDAS and ask for some of this testing? Sorry this is so long. But I really think after 5 years of living with this in our family seeing one of the big 3 is the only way to go. My opinion, of course. But, our ped and neurologist believe in PANDAS, but they do not know how to treat it. Plus the neurologist may have drawn our initial ASO titer 5 years ago at the wrong time, I have just now learned. We have not planned on doing the CAM kinase II test, we are not sure about that, I may quickly ask Dr. K his opinion before we go, Dr. K only wanted the antDNas B titer....

Over the last five years, I have noticed that my ds9 with most viruses, especially with high fever, tics get better. Some viruses increase the tics...I guess it depends. With strep, the tics increase for us even with fever. For some reason, starting the antibiotics with strep does not decrease them, it is almost like when strep turns it on, it has to "take it's course". That is how I know he may have strep...he will have a constant vocal tic that suddenly increases. He has not had strep as often in the last three years due to his tonsillectomy. I wasn't sure why the symtoms decrease with fever...after reading the forum I wonder if it is the fever or the ibuprofen I give him for the fever...

...Are you sure you're talking about Dr. L. here? ... ..not sure its cool to state something like that. Isn't your child a patient of hers? I am pretty sure Dr. L. is VERY dedicated to helping these children.......that's something we should all stay focused on. Just a comment here really, I seem to always have some kind of personal example of our own in these instances...but as a parent it is our job to protect out children. And NO healthcare provider is perfect. They can all have a "bad day". When my ds9 was 4 and we were in crisis, we could not see a psychiatrist for 8 months, but we could see a psychologist in a few weeks. This lady was CRAZY. And I left there so upset, knowing she was wrong. So, I moved on and traveled to see a psychiatrist in Pittsburgh and also had a few email exchanges with the anti-Christ ( Dr. Kurlan...now of course I never got anywhere else with PANDAS as it is rare to find someone to treat it... The point is I found out later through colleagues that the crazy psychologist had a few issues of her own...a major illness. I had gone as far as to complain to the dept of psychiatry in that hospital, and I got a call of apology from that director; she knew something was wrong with this lady but told me to do anything they have to document the complaints. It really ticked me off though that they still let families in crisis see her... and I also found out through these colleagues that before her illness, she was THE BEST TO SEE. Just food for thought... devils advocate really...all of us parents need to keep focused on our paths and children but use our gut instinct if you think the doctor did not understand the story...that is why I am preparing so hard for my visit with Dr. K...I have five years of medical records from OT, speech and hearing, ER, complete pediatrician chart, developmental pediatrics, neurology, psychiatry and urgent care place to secure, organize and send to Dr. K before we even see him...plus write my own account of the last 5-6 years, plus all the school info, state tests, and handwriting and drawing samples. It is truly mind boggling. So I feel for you when you question if you gave the story of your son accurately enough...

Hi Josh's mom...I am pretty new to this forum and there are many many more persons on here better versed in this than I am. But, I saw your message and wanted to reply asap. Please read as many of the prior posts on this forum as you can. Get on pandasnetwork.com and read all of that. Read any and all of Buster's information. You will note that there are three PANDAS experts they talk about here...Dr. K, Dr. T and Dr. L. Dr. L would be closest to where you live...or you could travel further or do a phone consult with one of the others. Reading more will give you an idea of which physician may be the best fit for you regardless of travel or distance. For what it is worth, if I were you I would try to arrange to see the specialist asap instead of wasting any time. I feel if the word PANDAS is mentioned just get to one of them. We are now just getting set up to see Dr. K, but my 9 year old son has dealt with a lot of this since age 3 or 4. What a lot of wasted time!! We have dealt with many issues over the years and some of them were not covered by insurance (and I have great health coverage). I just recently got 2 bills, one for a $115 visit and the other for a $171 visit that was not covered...So I figure $350 to see Dr. K is nothing as at least this guy can tell me something!!

Sorry, I am still learning how to use this forum and have not yet figured out how to take away the quote. I am interested in your story in that you have a psychology degree, so you would know what you are talking about with mental health. That gives you an edge. Our situation is similar in that when my son was four and had his explosion, it was the neurologist who mentioned the word PANDAS or I would not have known what it was...but the ASO titer was negative so it was dismissed as a possibility. I know now that first, maybe actually checking for strep may have helped and second, an antiDNAse B titer could have helped...but when to draw....this was five years ago. Kind of a missed opportunity? We were given celexa for him but began to see a gradual improvement, so we never started it. I think that was the best decision we made, as if he started that SSRI it could have made him worse, or if he got better we would have thought it was the SSRI. Now, it took another month until he was functional and many more months for symptoms to resolve, but I'm still glad we didn't start the SSRI. I feel that the last five years have given me more reason to feel this could be PANDAS for us as I have had the benefit of seeing his response to strep over the last five years. And his symptoms do increase with strep. But, I also feel we are so lucky, as although this is hard to deal with at times, I am hearing many other stories on this forum in which the children are much more severe. I think of all of you in that situation frequently...as all of you who have seen the severe flare know how hard and heartbreaking that is. My husband and I still tear up sometimes when we relive some of those moments of the past. I have asked my son, now 9, and he does not remember that time or doing those movements, ect. He has issues now, and they come and go, but nothing as debiltitating as the first time...not sure why? My dh's father was diagnosed as bipolar, but we cannot ask him details about his diagnosis or if he had frequent tonsillitis or strep as a child as he passed away ten years ago. But hearing the story about your father has intrigued me...

And one would think that if they had bipolar they would not grow out of it, but if they were PANDAS they might. My question would be, and maybe someone out there knows this, how common is it to diagnose bipolar in a child vs. adult?

When I read this I was picturing all your kids in line for cod liver oil like on the Little Rascals....

Yes. We actually had problems with this early on, before the most severe flare. Our ds could not tolerate the lawn mower, sweeper, ect. He would hold his ears and scream and cry. This started at age 3 or so I am guessing...his biggest PANDAS like flare was at age 4.

DO NOT LEAVE THIS CLUB, I REPEAT DO NOT LEAVE THIS CLUB. OK, sorry for that. But really. I read your post. I am NOT an expert. But I work in healthcare; I am not a physician but I do see patients. And I can tell you a few things I have learned over the years. Dr. T if you are reading this you may know what I am talking about. First, sometimes doctors talk out loud what is buzzing around in their heads. Many differential diagnoses may be spinning around their brain and they come out their mouth. That is not always a good thing. For example, I went to see my doctor years ago for dizziness. My doc did a neuro exam and I did sway a bit with my eyes closed. He started saying how I needed all these tests to rule out neuroma (tumor) and multiple sclerosis, ect. After all was said and done I had fluid in my inner ear, but I was a wreck for a few weeks. In addition, although I work in OBGYN, I work in a clinic and we have a VERY large mental health population. I have seen many patients over the years with bipolar disorder. Many of these patients have anxiety and sometimes OCD as a comorbid condition. Most patients I have seen with bipolar disorder that are severe will stay awake for days at a time and not sleep talk really fast, try to buy a bunch of stuff even though they have no money, then have other times where all they do is sleep. They do have anger issues and rages, they frequently get mad at me for no reason and storm out of the clinic. Most of these are pregnant older teens and adults though. Dr. T don't feel bad when I say this but I feel a neurologist can suspect a patient may have bipolar, but I feel that diagnosis should come from a darned good psychiatriast. I don't see a correlation with the neuro exam being normal. Five years ago when my ds9 was four and had a severe, debilitating flare, most likely PANDAS or at least PANDAS LIKE, the neurologist we saw charted a normal neuro exam- I have those old records. But I will tell you- he had staring spells and all kind of bizarre movements. But it came and went. That is why Buster said in a prior post that even Susan Swedo has never seen the "onset of Pandas" herself...I think that is was Buster said so sorry if I misquoted that. The EEG is most likely long overdue. Get all the testing you can. Get all the opinions you can. Good luck!!