nojo

Well that's a bummer. That would mean we are essentially unprotected still. What do you recommend? Our pediatrician would probably do zithromax, but he doesn't want to do that, and said we would do that only every 4th day b/c of half life. I think he is hoping less exposure to germs from school will be helpful. I just wish we could get some of this under control. At this point, I'm not confident we are clearing the strep, although the dr. thinks we are. For the record, we still aren't getting called back from Dr. Latimer, which is frustrating since we made the trip to see her last month.

Can you explain to me what prophylatic means? Is it just the particular dosage that the keep her on long term to prevent a reccurence strep infection? Is it the same drug? Are you just adding in more Augmentin for the ten days then go back to the long term dose? Thanks. Angela The twice a day was a treatment dose when we thought she was positive. Prophylactic is to prevent getting strep. That is why were were bummed that it appeared she was positive via the rapid. It seemed the prophylactic dose wasn't working.

She's 7, 45 lb, 600mg 2x a day for 10 days. Prophylactic down to 1 time a day. The doctor said to make sure to do prophylatic dose in the morning to better protect her.

I wrote earlier this week about our visit to pediatrician. We went yesterday, the whole family, with a huge notebook including many of the research papers cited here (thanks Buster) and sat with the pediatrician for over 45 minutes. Usually the office is packed, and for once, we walked in, it was totally empty, and he had time to really talk. He always tries to, and he does really try to help us, but the poor guy is swamped. Here is what we learned: 1. Last visit both kids tested positive on rapid test for strep, older daughter on prophylaxis augmentin, she has pandas. Younger daughter just completed amox round for positive strep earlier in month, missed some does because she broke her elbow, had to have surgery and pain meds made her throw up. I incorrectly assumed the culture was also positive since they did not call me to tell me. The culture was negative, so it would appear we had a false positive on the rapid test. I think this is good, because my understanding is, that they have strep in the lining of the throat, but it isn't an infection, it isn't able to grow. These are just dead or left over cells from the previous infection. 2. Older Daughter put on full strength Augmentin last visit per positive rapid. Just completed full round. Younger Daughter put on zithromax. During the course of Zithromax, younger daughter broke out in "strep" rash. I'm not sure if it is scarlet fever exactly, but it is a sand-papery rash on her back that is colorless. It spread to her stomach. For her, 90% of the time when she gets the rash, if I bring her in , she is strep positive. The doctor agreed yesterday, it does look like strep rash; however, it could be viral. We re-cultured both girls to make sure clear. No rapid tests taken yesterday, and from this point forward we always have to have a culture with a rapid. 3. After much debate over the merits of many antibiotics, both girls are put on prophylactic Augmentin provided they are clear. If they test positive on Augmentin, we are back to the drawing board on how to clear, and which prophylactic. 4. Because our school system is going out of its way to be unhelpful in a number of ways, we are going forward with homeschooling, primarily because I want to give both children a break from constantly being sick. We are going to take a few months to heal, get strong, sleep when we need to, and try to get our pandas daughter to actually put food into her body. Between the constant strep, and her severe asthma she needs a break. So, this is where we are, I hope some of this is helpful. I know that our breakthrough on prophylaxis was scaring me, so I wanted to let everyone know what we had learned. If anyone has more information about the false positive on the rapid test I'd be interested. There was also some talk about the carrier state yesterday, which I know there is some talk on the boards about, and we aren't really understanding yet. And for the record, I hate strep!

I am not at home, but I have a chart of the last 2 years if you all would like info and dose info for both girls I can post later. I've only done an excel spread sheet of the last 2 years. We've hit all the major antibiotics though. Also for the record, we do change toothbrushes, toothpaste, and both girls have had tonsils out. Has anyone had any luck with an infectious disease doctor to get rid of the actual strep infections? Is that what we need, or immunologist?

Yes. and yes. In a research setting, culturing for clearance is done on the 20th day from commencement of the treatment (i.e., from last positive culture that was treated). Great question and it appears you probably won't clear with "normal" dosage of antibiotics. It appears that this is a problem for many on this forum. Antibiotics rely on your immune system to be able to take out the bacteria. The antibiotics slow it down, but the immune system has to take it out. From what you wrote it sure would seem that your IgA levels are low - are they? Are symptoms off the chart for your PANDAS kid or are you mostly worried about the strep? Iga levels were ok, it was our igg levels that were way too low. Our Pandas symptoms are currently manageable, but as you all know that can change on a dime. She is already cranky, mildly violent, and we are struggling to get any calorie into her. Food is a major issue. We had the same thought. We tried to put both our kids on prophylaxis but our pediatrician wouldn't do that for the non-PANDAS child. The scary thing is the doctor is putting the non pandas daughter on prophylaxis too, but so far I'm not sure it is working. We haven't been totally consistent with non pandas daughter b/c of the whole arm surgery, and vomiting up some of the doses. 99% of the time over the last 2 years if one is positive we treat both anyhow. Officially the prophylaxis is new, but they have been on full dose abx approx 2 weeks of every month. Buster

DD7 is Pandas, dd6 isn't. Both get strep all of the time. If one sister gets it, the other does. We have treated the whole family including the dog. Don't seem to have a carrier in the house. I tend to think at some points reinfection from school, at other points maybe not clearing fully. We do have times that we don't have strep, like in the summer, so I think we do clear it. This year I sent the girls to a summer camp, and within the week and 1/2 of being around other kids we started with the strep cycle again. We had tried prophylactic antibiotics for both in the the spring, and made it through six weeks of school so I was hopeful. In addition to causing PANDAS problems for us, many times in the fall and winter, the strep causes our asthma to act up, then we are not sleeping, not breathing, more tired, more cranky, not eating, missing school, and then we get more sick. Ugh... the cycle just never ends once the fall starts until the summer. Thanks for letting me vent.

My husband and I are going back to the pediatrician tomorrow to ask for help. He wants to help us, but he is at a loss. We went to Dr. Latimer last month, I've called twice last week, left messages, no return calls. I'm not sure what exactly to do. Any advice will be welcome. We've been on antibiotics, mostly full dose for the last several months. After a full dose of cefprozil, switched to prophylactic augmentin. DD7 cultured positive 12 days ago for strep was put on full dose augmentin. DD 6 was on full dose amox during October, then tested positive immediately afterwards also 12 days ago for strep (same day as sister) put on zithromax. I'm not sure exactly why he put one on each antibiotic 12 days ago, different doctors in the practice prescribed the prior antibiotics for October, hence the different medications. During the course of zithromax, dd6 broke out in the rash she gets when positive for strep (not a typical strep rash per se, but typical for her). I'm fairly certain she is not clear. The rash is not clearing, in fact it is getting worse. I can't tell if dd7 is clear or not, she is the PANDAS daughter, she is not full on with her typical symptoms, but she we haven't been healthy in so long, I don't even know which way is up. Here are some questions: 1. Since they both were positive on antibiotics, and it was a culture, not a rapid, it wasn't a false positive. Does this mean the prophylactic didn't work? Do we need a stronger prophylactic or a different one? 2. If we re culture tomorrow, is it too soon, is it likely that we need a longer course of antibiotics full strength because we've not really eradicated it? 3. We tested out of the range of normal for our igg levels. When we saw the immunologist, he said we looked like we were mounting a response to our vaccines (dpt) so even though our numbers were low, we seemed to be working ok. (We didn't test the pneumo titers this time, we did 2 yrs ago, failed, revaxed, then passed) We opted out of further testing at this time of the t and b(?) cells and want to try the prophylactic antibiotics and less invasive measures. My question about this is, are we never really going to clear strep if our igg (or other immune) cells aren't really working right even with the help of antibiotics? 4. We are getting ready to pull our children out of school and homeschool for a while to try to give their immune system a break from the constant assault from the germs. After I've charted it, the only times we aren't positive for strep usually are June, July and August. Am I just kidding myself though, will this give them a chance to heal, or is it just delaying dealing with the bigger problem that we aren't getting rid of the strep. I appreciate any and all advice. I keep trying to read these scientific papers and understand strep, and antibiotics, blood brain barriers. I'm just so tired I can't wrap my brain around these topics.

Buster, thank you for trying to explain that to me in language I can understand, and I do think I understand what you are saying, but I want to restate it, to make sure I understand it. Because we've had so much strep in our home, my daughter may not currently have an active infection, but still be experiencing a flare up of symptoms because of the old antigens that are still circulating from previous infections. If the rapid test was positive, but the culture does not grow, that would suggest either colonization, or invasion, but not necessarily an active infection. If the culture grows, does that suggest an active infection? Does that mean the prophylactic antibiotic wouldn't be strong enough or not the right one? Finally, we are one of the people that didn't do so well on our immune work up. Specifically our Igg levels were too low. When we saw the immunologist, he suggested that although our numbers were low, we were making a response to our vaccinations, so the igg cells were doing what was needed. He was going to do some sort of work up involving I believe the T and B cells, but we opted out at the time since we have had so much invasive testing done. From the way you are describing antibiotics, if our immune system isn't working correctly, could we never be eradicating the strep? Is this the reason that ivig is needed to heal, to give more of the good guys to fight? I know you aren't a doctor, just a dad who has really worked hard to understand all of this, and I truly appreciate you taking the time that you do to explain so much on this board. I've read many of your posts, and it really has helped me and my daughter.

Hi all, I need some advice. Brief history, two daughters, older one PANDAS. DD6 strep + 9/17, zithromax. DD7 strep + 9/20, zithromax. 10/2 DD7 cultures negative but put on 10 full dose Cefzil to make sure clear, and then once a day prophylactic dosage. 10/9 DD6 breaks elbow, and while in the er I request a strep test. (yep, the doctor did look at me funny, but she was positive). She starts 10 days amox. Because she needs surgery for the elbow and the narcotics make her vomit, she misses several doses of antibiotics. 10/15 DD7 visit to Dr. Latimer, she advises switch to prophylactic Augmentin (but doesn't recommend dosage). Talk to local pediatrician, he's on board with augmentin, prescribes 600mg 1 time per day. Both girls weight approx 45 lbs. Start 10/23 Augmentin. Today, dd7 sick, grumpy, sore throat. Both she and sister test positive on the rapid for strep. Help, what does this mean? I'm thinking that dd6 never cleared the strep b/c of missed doses with elbow, but shouldn't the prophylactic abx supposed to cover dd7 from getting strep? Does this mean prophylaxis isn't working? Our doctor is sending out the culture, he thinks we might be carriers, but dd7 had a negative culture on 10/2, and she feels cruddy, and even though she isn't full blown crazy, this sure explains a whole heck of alot. I'm not surprised she's positive, but, she hasn't been off antibiotics at all since 10/2. We have not missed a single dose. I know he doesn't really know what to do with us. Currently, while we wait for the culture, we have doubled augmentin for dd7, and dd6 is on zithromax. Any ideas or advice? What do we do now? Up the drugs? Switch drugs? Hide until summer?

Thanks Faith.

We took the test October 15 during our visit to Dr. Latimer. I see alot of you all recently got results, how did you receive them? By mail, phone, email? What should I expect, and how long? Thanks!

Hi Michele, I'm also here in Richmond. We've seen Dr. Fortner. We thought she was very nice, but she is only a part time pediatrician. We ultimately decided to travel to see Dr. Latimer and are staying with our original pediatrician. Feel free to send me a message, and I can give you more information about our experience. Noelle

I have alot to say about this topic unfortunately. I had the most horrific meeting at school that I have ever had in my entire life. I went in to school for a child study team meeting to discuss 504 eligibility, explain why strep is dangerous for my daughter, ask if they could let me know when anyone in the class is positive (per a doctor's letter), explain to them how it was explained to me that we have an immune deficiency and the live H1N1 virus that they are administering to the entire school is dangerous for us. I made the mistake of going to this meeting by myself. I thought these eight educators would want to help my family in some way. Instead, this is what happened. I was told that they have never heard of PANDAS, so it doesn't exist. I explained this is why my family went to see Dr. Latimer. Not many doctors in our area have heard of it. Then the clinic nurse asked if my daughter got a fever when she got strep. I told her no, and she said "Most children get grumpy when they get strep, that is all that she has wrong with her." I replied "Maybe, but do most children have neurological damage or choreoform movement from strep?" Then, they proceeded to look at the information I had printed out from the NIH webpage. The school psychologist wanted to know if we definitely had group A strep (like does she know about group B or any other strep for that matter?) This continued on, and someone stated this sounds psychiatric, do I have psychiatric problems in my family (yes, someone really did ask me that). I re-read the name, and again explained how her brain swells and can be damaged. I tried to move the meeting along to her immune system being weak. My daughter has always had health issues, and 2 years ago, missed 6 months of school on homebound. They had to send a tutor to our house. When I told them her igg levels are low, and monthly ivig's are being recommended and we need to miss the week after the vaccine, they told me the note from Dr. Latimer wasn't good enough, and in their opinion, exposure to germs would be good for her, to build her up. (They are going to kill my child at this rate). I tried to explain again, she has severe asthma, we have already had a cold, flare up, and strep, and it is only the beginning of October. We are already falling behind. We also have food issues like many of you do. We haven't gained any weight in a year. They had the audacity to suggest maybe offering her a choice of what to eat for lunch. I told them "We are way beyond a choice of foods, I will feed her anything she will eat, and we are giving her nutritional supplements just to get calories in." In the end, they refused to meet again with me to discuss 504 eligability, or for another child study team meeting to review what them immunologist suggested. I am thoroughly disgusted. I wish I had had the presence of mind to stop the meeting, and say "No one here is qualified to diagnose my child, none of you have a medical degree. What are you able to do to keep her safe from germs at school and what modifications can we make for her when she is out." I have had to fight for her to even be allowed to even have a water bottle at school. Bring a medical advocate if one is available to you. If we decide to keep our children in school, we will be bringing a LAWYER to our next meeting. I am seriously considering homeschooling. For the record, I was a teacher(that won regional awards) that retired when I had children.

Faith, this is us too. We are the bottom 5th in weight. She just doesn't eat, and when she does is very, very slow. When she is sick, she totally shuts down on food. She would rather drink than eat, so we have to limit milk at or around meals. We supplement her with Boost, and we put heavy cream in her milk to help her gain weight. She still hasn't gained even a pound over the last year. Lately she has been picking at breakfast, and I've been finding most of her lunch and snack in her bag from school. I've threatened her that if she keeps it up, I'll make her eat with a teacher or in the clinic. She ate her whole lunch the next day (or hid the remains much better). I walk a fine line when making food I know she'll eat, and indulging her quirks. Currently for breakfast she likes special K with red berries, but we have to pick out all of the red berries. You can't just by plain special K, it tastes different . When she does eat my husband and I do our happy dance.

We failed the IGG levels, specifically sub class 1 and 2. We did pass subclass 3 and 4. I'm not really sure how we will proceed. I'm not really surprised, she is sick all of the time. When I made the spread sheet, we don't almost don't need to be on prophylactic antibiotics because there are very few gaps when we are not on antibiotics. When Maddie gets sick, she always goes downhill rapidly, and she has been admitted to the hospital 4 times over the last few years, mostly due to the breathing difficulties. Dr. Latimer did suggest we will be diagnosed with a primary immune deficiency when you look at our numbers and history. I know we need to meet the immunologist, but we are nervous about how to proceed. I hold out alot of hope that IVIG will really help us, but am terrified to put a blood product from so many different donors in my daughter. As it has been said, it is safe for what they know about now, but what about all of the crazy things they don't know. When I looked at our records, the only time we are not sick is during the summer, and the 5 months we were pulled out of school and put on homebound with a tutor supplied by the county. I know we can't live our life hiding, but all this flu stuff is scaring me to death. We are the people with the underlying conditions. Her asthma is currently under control, but the flu (any flu, swine or regular) would land us in the hospital. I'm not sure the school can keep us safe. Does the school have any obligation to report infectious disease if they have an immuno compromised student? I want to explore all of our options before making any decisions. Maybe home schooling will give us a break from illness, and a chance to get stronger. That being said, I do have a meeting with the school next week to also discuss some of this. Any helpful suggestions for the school meeting?

When my daughter holds out her hands, she can't hold her fingers steady, she looks like she is playing a piano. That shows that the basal ganglia is inflamed, and shows that even though the strep titer test was negative,(we do however always culture positive), her brain has been effected by the strep, and it will most likely show up on the Cunningham lab work.

I probably should clarify, as I looked over my early morning typed entry, the lab is a separate entity, and that was the worst part of our visit.

I agree, she really was wonderful, and helpful. I know that the lab wasn't part of her office. Overall, my experience was very good. Her staff may have been having an off day. It was just little aside type things that were discouraging. I can tell she is very compassionate and knowledgeable. I left feeling relieved, not stressed out. I hope that my rant isn't taken the wrong way, that was our only slight negative in an otherwise very encouraging and helpful day.

Don't be scared, it was just little things the front people said. We were the only patient there for the whole 90 minutes. Someone else arrived when we were leaving, but we had her full attention for at least 90 minutes. We were not rushed at all, she answered all of our questions, looked through all of our information, and was very thorough. I felt like I did get my money's worth just having someone knowledgeable full undivided attention for that long. Her waiting room was set up for children, with block and a fish tank. When we went to the lab to do the Cunningham blood work, when we walked in, the guy said "Oh, let me guess..." like that is the only type of bloodwork they run these days. The lab was in a different building, and not part of her office. But it was little things they said when we were asking directions for directions like "Oh are you a PANDA'S patient?" type stuff. Maybe I was just grumpy from all of the rainy weather, and other challenges that life is throwing our way these days, but I wasn't really feeling the love.

Hi all, a quick update. We saw Dr. Latimer yesterday, and it was a helpful visit. I had my (large) 3 ring binder ready, my spreadsheet of strep positives and antibiotics handy. She was very nice and she really listened to us. She pointed out that we do have chorea (which I didn't know) so I'm really glad we made the trip up to see her. I left feeling validated that I wasn't crazy, and that I could help my daughter. The doctors we've seen in Richmond didn't quite know what to do with us, especially when our aso titers came back that we didn't have strep even though the culture was positive. I know this has been the a topic of debate lately, and it was making me question why we were culturing positive, having behavioral symptoms, but the blood test shows nothing. We did the Cunningham test while we were there, so I don't have those results yet. What she also told us, is that because we have severe asthma, and all of the positive strep tests we have been essentially treating the PANDAS, with prophylactic antibiotics and lots of prednisone (for the asthma) over the last two years. We are on prednisone quite a bit each winter. We also did the immunological bloodwork and failed the igg portion. Because of the failed igg portion and the constant illnesses she believes for us, a PANDAS diagnosis is really unnecessary, that we need to follow up with the immunologist, and pursue ivig because of the immune deficiency since this is a more easily recognized diagnosis. I never thought I'd actually be glad to hear that our severe asthma has saved our daughter from more severe neurological complications. I found her to be very helpful, but I do have to say, her office staff, and the lab that drew the blood work made us feel like second class citizens. I do think she is getting inundated with PANDAS patients and she was as kind as can be, but I really was pretty ticked off at the way some of her staff and the lab especially treated us. We drove for over 2 hours and are paying their salary. They certainly can learn to behave a bit nicer and show some compassion to parents who love their children enough that they are willing to do what it takes to get help for them. OK, rant over. Because we get strep monthly, and the swine flu is so scary and rampant, have any of you all considered homeschooling your children? Between the asthma, and constant strep we are exposed to, I'm thinking it may give my daughters time to heal from the constant assault of germs. I've decided to keep my kids home today, because flu is confirmed in the class, and with the weakened immune system, it could be bad for us. Our school is offering the swine flu vaccine, both the live virus and shot to all students. Dr. Latimer told us with our weakened immune system we cannot go to school for a full week after because being surrounded by live virus is dangerous for us. She wants us to get the shot asap. We are to meet with an immunologist next week to further discuss the implications of the bloodwork. Has anyone decided to do this? Any recommendations? Thanks again for all of the help I've received from all of you. The information I've gained here helped me tremendously. My husband has been impressed that often after you all explain the research in English, you provide the actual links to the scientific articles.

This is my understanding: A positive rapid test = positive (unless you've been recently treated with antibiotics and then you need a culture) A negative rapid test = can be a false negative (send to culture) So generally does a positive rapid strep test mean you do have strep? When I got our records and noted my non pandas daughter had 12 positives over 30 months the doctor dismissed this saying that they were just rapid tests, not cultures. They were positive enough to treat the strep, so I assumed that they were positives. Apparently our practice throws out the second swab if the rapid test is positive. Are there many false positives in rapid tests? Does this discount the positive rapid tests on my other daughter? Bottom line: Do you need a culture to prove strep, or is a rapid test good enough?

Thank you. Just the very beginning of your post, explaining how antibiotics work made a light go off for my husband and me. I didn't understand how they work at all. I thought that they killed the bacteria, and now that we are finding out our daughter's immune system is compromised via the blood work we just had done, it makes more sense why people have to go the ivig route. If we don't have enough of the good cells to fight the strep, the antibiotics aren't ever going to work. We have been testing positive for strep almost monthly. I would guess that we really haven't been able to eradicate it. Again, thank you. This will help us tremendously with our Doctor's appointment next week.

We just got a call from the new pediatrician, we don't have all of the blood work in, but part did come back. We didn't do well on our IGG levels, they were too low. Specifically level one and two, we were under the low range, but we passed level 3 and 4 of the IGG. She is recommending we see a pediatric immunologist. Two years ago, we failed the pneumococcal titers, but this time they were not able to test them for some reason. Hopefully they will be able to do that when we see the immunologist. For those who have low IGG levels, what does that mean? Is this why we get strep all of the time? We are also scheduled to see Dr. Latimer next week. How will this impact our visit with her?

This is all so interesting to me, because it is all finally making sense. I used to just think it was that I had a picky child. Every season the change is a nightmare, and when we actively have strep we can hardly find things to wear out of our acceptable outfits. Clothing was so stressful, even when she bought it with me, suddenly, it didn't feel right, and she couldn't wear it. We would have nothing to wear at all. It wasn't until recently that I noticed the pattern with the clothing and shutting down on wearing clothing as a sign to go get our strep test. One of our more recent rages that finally made the light go off for me was when we were traveling and we didn't have any other clothing choices. The screaming and complete panic she was in finally clued me in that she did have strep, and we really can't go on living like this. It was still the summer, we hadn't even started the heavy strep exposure season! The new pediatrician that we saw on Friday that prescribed the prophylactic antibiotics was really observant. Maddie was freaking out about putting on a paper gown, she couldn't stand the noise, or the way it feels, so the doctor let her put on her clothing and the doctor noticed how she wears her socks inside out because of the seams. (We wear other things inside out also because of the way they feel) Now that we are going to be on antibiotics all of the time, hopefully it will help. Before, we would test positive, do our 10 days, wait a week, flare up again, and start antibiotics again. We were on antibiotics so much, but not enough, so it is hard to tell what is becoming her part of her personality. Fortunately, or unfortunately as the case may be, we are on prednisone quite alot each winter because of our asthma. It has made it harder for me to really see the pattern as clearly as I was able to over the summer. Over the last 2 - 3 months it has become easier for me to recognize the pattern of a flare up now, especially the clothing and also shutting down with eating.