nojo

So Buster, in our case, I would think: 1. We definitely in this instance had signs of infection (fever, rash, vomiting) instead of colonization. 2. The small amount of zithromax , once every four days, was essentially worthless as a prophylactic dosage. 3. According to prior information, you need to wait 21 days after antibiotics to re-culture after a previous infection to determine if you are truly clear. So even though we had a biaxin shot, 10 days keflex, and then 1 dose zithromax, four days later another, two days later full blown scarlet fever, I can't really know if this was original infection or a new infection. 4. Our prior treatment was for a positive rapid test, but negative culture. Could she have just been colonized at this time, not infected? She had no fever, no sore throat, but was ramping up all of her pandas symptoms so we could tell something was amiss. 5. If, when we are around other children, never can make it 21 days between antibiotics, would it be safe to assume, really we are probably not truly clearing? I think what I'm trying to get at from reading your above post is that the antibiotics are not working for us because our immune system needs to be working to help the antibiotics...correct? Our IGG levels were too low, is that what needs to help the antibiotics fight the bacteria? Our doctor wants to help us, but doesn't know how, I have a meeting next week, and I keep printing out the research papers to hand to him explaining all this. Thanks for spelling this out for me. I'm worn out from trying to get every bite of food in my daughter. I'm sad that she isn't strong enough to swim with her team tonight. I'm confused as to how to help her. I just want to to be able to be with other kids and play.

Well this is timely. My daughter 9 also has gotten strep while on antibiotics. We did a biaxin shot. Then 10 days Keflex. Then moved to zithromax every 4th day. We only got 2 doses of zithromax before she had strep. I realize from what I am reading (and what just happened) every 4th day of antibiotic is worthless. What is the incubation period from exposure to infection? My daughter seems to always test positive on the rapid test, and then the culture will come back negative. This time, the rapid came back negative (I have not heard about the culture). Ironically she had all the typical full blown strep symptoms this time.. vomiting, fever 101, headache. She ended up full blown scarlett fever with rash from her ears to her toes by the time we got full dose antibiotic this time 3 days later. Our normal dr. was out of town, and since we always are positive on the swab, we were told this is viral. We struggle with constant illness. My daughter also has severe asthma. Ultimately we pulled her from school this year to avoid the constant exposure to germs. We had a good winter and she seemed stronger. Now that she is around children this summer, she is again constantly sick. Strep, stomach flu and now on top of the strep, she has a cold. I have a meeting scheduled with the doctor next week and I need to make a plan. What is the goal of the prophylactic antibiotic? Is it supposed to prevent strep? Does our prophylactic dose need to be as strong as full strength to do anything? I don't feel like I'm being successful if she is only well if we have to hide from others. I need to manage the infections first, and then I can tackle the ocd, food issues, and rages that come. If I can't eliminte the source of the problem I'm getting nowhere. Also, if her IGG levels are low, will the antibiotics not really be able to do the job correctly? She was below normal in subclass 1 and 2. I'm I just being hopeful to think that rest, sunshine, good healthy food and less exposure to germs is enough to build up your immune system? Last question: She is on swim team, could she have low grade infection hiding in her body, and the stress of the race (the exertion) cause it to manifest? She spiked the fever the day after the race last week...is that coincidence? Thanks. I need to figure out what to do next. My previous plan of sticking my head in the sand isn't working. I just want her to be able to play with other kids and not get sick immediately.

Hi, I pulled out my 2 daughters this year to homeschool (age 8 and 7). My older daughter has PANDAS. She also has severe asthma, and we found we were always sick. She did qualify for homebound instruction through the county, where a tutor would come to our home to teach her. We had used this option when she was 6 and she missed 5 months of her kindergarten year. The problem that we had this time, is her sister, who is 14 months younger, would not qualify for services, and she was constantly bringing home illnesses to our house. For the record, we have been tested and have been found to have low igg levels, perhaps this is why we are constantly sick. As for the homeschooling, it has significantly helped my daughter. She has still gotten strep and other illnesses, but the frequency has declined. We withdrew both children the day before Thanksgiving. She had not gained any weight in approximately 2 years. She has gained 2 -3 pounds since then. She is able to sleep more, We got a season ski pass during the winter to get her outdoors during the winter to build her lungs and stimulate her appetite. Slowly she began to heal. We used to struggle to get any mouthful of food into her, every bite was a struggle. Meal times are not like that. The rages are gone. The bathroom frequency issues have disappeared. She is not hoarding things like she used to . We don't have all the clothing fights. It has become so much more apparent to me because she did just get strep and have many of these symptoms come back on a lessor scale after starting swim team. It is discouraging that we do tend to get ill when we are in group situations still. We have started prophylactic antibiotics to try Vacation Bible School. As for the educational component, it is not that hard either. There are many really great sources for curriculum out there. You can determine your philosophy and your child's learning style, and find a great fit. We have tried some things that we haven't liked, but for the most part, we have found it to be really enjoyable. My husband can tell a real difference in the way they are processing information. I've found it to be enjoyable to not be struggling with a sick child all of the time. It was daunting to start, but we are taking it one year at a time. My children really love it. They have asked to continue school during the summer so we can take time off at random times during the year to travel with my husband. For us, it had been a very positive experience. Overall, I don't think homeschooling is a cure, but it is definitely in our case helping with the constant assault of germs. It is giving our daughter the chance to heal. Feel free to send me a note if I can help. Noelle

I would be interested in coming, but cannot come this weekend as we will be out of town for a wedding. Please keep me informed, I am from the Richmond area, but if I am the only one, I can come toward Northern VA. Thanks. Noelle

They did the 2 swabs at the same time. We have had her tonsils removed a few years ago. We started the antibiotics (Keflex) and I continued to treat for the full ten days even when her culture came back negative. Could she have just enough strep in her throat to test positive for the rapid test (not enough for there to be a full infection) but because she is sensitive to strep her body is already making the auto immune antibodies causing the PANDAS type reaction? She would have to have enough of the strep in her to cause her body to react and cause the rash. If she had the perianal strep, we wouldn't have the positive rapid test at all. I know Buster has talked about the four stages of strep, could the rapid test show one versus the culture another?

We did titers once, and it came back she's never had strep. (I think we're the type that the titers don't seem to rise) We didn't check for perianal, how would we do that? Do you swab them?

No, antibiotics have only been a band-aid for us. They did help, but for us we never could get well, and we did many different antibiotics, all full course. So far, the biggest help has been pulling out of the germ fest of school. She does have some other issues, severe asthma. Before taking the drastic measure of removing from school I had charted out all her positive tests over the last 2 years, compiled all antibiotic usage, asthma flares, prednisone usage (prescribed for asthma). She was on homebound for 5 months of kindergarten. After charting everything over the last 2 years the only times she showed any improvement was June, July and August and the time period she was on homebound instruction. Last year it became increasingly clear when she went to a one week day camp and had all the crazy ocd stuff/eating issues after one week, and she tested positive for strep, after only one week around others! That is when we started really making the PANDAS connection, when she couldn't sleep until the silverware drawer was sorted properly ( sobbing, crying hysterically, and that is when I knew she had strep again). When she came off of homebound instruction, she only made it 2 weeks that year before getting sick, and having to pull out again to go back on homebound. It has helped significantly. She finally is not testing positive for the strep all of the time, that is what leads me to believe she did finally at some point clear the infection from before even if it did not earlier in the year. We have had many clear rapid tests and cultures this winter and spring, including the week before. So why now the positive rapid, and then the not positive culture? I think I'm starting to ramble, I hope this makes sense.

Before we pulled her out of school at Thanksgiving we did several courses of antibiotics (We were almost on monthly full dose as it was) and then finally moved to prophylaxis before tapering off. We did seem to be clear and have several negative rapids and cultures when tested through the late winter and spring. We weren't were never sure if we weren't clearing the infection, or were being constantly reinfected either. I took this as a good sign that hopefully through the less exposure at school she was starting to do better. So this last little bit was very discouraging to say the least. Again, the rash leads me to believe she the infection (or at least exposure is real). It is so frustrating isn't it! In my former life I was an art teacher, so reading all these scientific papers is using the opposite side of my brain. I so wish I could just piece this puzzle together for her and figure out the missing part, I just keep thinking if I could figure out how to help her to keep from getting sick in the first place. Thanks, I really do appreciate you taking the time to listen to me think out loud. It always makes me feel better to remember I'm not the only one (even though I'm the only one around here)

Hi Karen, It is just so complicated. For a long time, the rapid was proof enough for treatment. We were testing positive too often for rational explanation though. Our pattern is positive, 10 days antibiotics, approximately 2 weeks clean, and then another positive. We were averaging at least 10 positives a year if not more. The doctor then decided to start culturing to make sure we weren't one of the very rare false positives. There are cases of false positives from what I can tell (from my google university degree!) I think you can have an overgrowth of staph bacteria in your throat, but why that would test positive on the rapid is beyond me. Anyhow, it is supposed to be exceedingly rare to have false positives on a rapid test. And for us to have this happen several times leads me to think something just isn't right. It has happened too many times for me to think lab error. It makes me think more along the lines of "It is one more sign her body is just not processing something correctly (or perhaps a better word would be in the typical way others do). " We did the Cunningham test last fall, and I'm glad, she was 172, so I feel fairly certain that she does have PANDAS. Our lab results also show low IGG levels. I don't know if this is the component. I feel like there is something I do not understand about this piece of the puzzle that could help me or others. I am not sure if anyone else has experienced this, or can explain what is going on to better. I do know that we can't even seem to be in a room full of kids without leaving with it. Thanks -- Noelle

I've posted on this topic before, and I'm still confused by the conflicting results we continually receive. My daughter very often tests positive for strep on the rapid test, but when the long term culture comes back it is negative. Initially our pediatrician was telling us these were to be considered "false positives" most likely caused by the previous strep infection... there would be some left over cells in her throat but since they do not grow on the culture it is not an infection and therefore no antibiotics are necessary. I kind of understand that theory, but it doesn't totally sit right with me, here is why. I took my daughter last week for a strep test and we had the same issue, positive rapid, 3 days later culture comes back negative. I have a hard time believing it was a true false positive because: 1. We had a negative rapid and culture one week prior, so no recent infection. 2. She was covered in strep rash, all over her trunk and face. (raised, dotty, sand-papery rash) 3. Her throat was sore. 4. Urinary frequency issues. (Going to the bathroom, leaving, turning right around, feeling like have to go again) 5. As the week progressed we started having more and more food issues (textures, refusing to eat, fighting every meal to get her to eat) We did not have full fledged rages, but I think we caught this early. Many of these signs are classic for her, although on a much less severe scale. What does this mean? Is she just so sensitive to strep that she is just exposed to strep (invasion not colonolized?) that even though she is not technically infected it is just the exposure that is causing her immune system to go haywire? What exactly is the mechanism that causes strep rash? Does anyone else send out positive rapid tests for cultures? Do you get these wonky results? Thanks!

Hi, Sorry for the late reply, we were gone for the weekend. I have found the book "The Well Trained Mind" to be very valuable. It is written by Susan Wise Bauer, and she talks about classical education at home and it lists many resources. I think we would be considered eclectic in our approach. She has also developed some actual teaching materials, we used some of her materials for writing and grammar. We use a program called Singapore math, and I just ordered a core curriculum from a religious company called Sonlight. There is also a book call 100 Top picks by Cathy Duffy that was very helpful, not just in choosing curriculum, but in determining your child's learning style and your learning/teaching style. The one thing that I think really helped us was I started slowly, and as we grew more comfortable, I added in more subjects. We are able to get our work done in 2-3 hours a day, 4 days a week. My children really do enjoy it. Homeschool associations are also a good resource.Feel free to email me if you want more information. I was really scared at first, but it has been very good for her health, and I do enjoy my girls. My husband can also see a difference in how they are learning. Noelle

For us, we started with the constant illness as soon as we started preschool also. I remember asking if we should pull out, and the doctors originally told us no, that it was normal to become a little more sick when you start school, but finally, this year we had 3 different doctors tell us what we were doing wasn't working, and we needed to pull out of school. Our daughter got RSV twice in one year when she was 2, both times resulting in hospitalization. The kids that get RSV that bad they don't know if that damages their lungs and cause asthma, or if their lungs are already weak and susceptible to the RSV virus. She started getting strep from the first week of school, which would in turn weaken her, and cause flare ups. She also was found to be highly allergic to mold, and we tried switching schools after we found out the preschool had flooded once during a hurricane. (When she went in that room while already starting to get sick, she ended up in the emergency room. It was only later that we could piece together everything). From the charting when she was on homebound for Kindergarten, we could see the vast improvement. She was out for 3 months, came back to school, and only made it for 2 weeks before getting really, really sick again. It was devastating because she was so strong going back. Currently we are off antibiotics prophetically. I'm not sure I fully agree with that decision, but I've agreed to try it. Since we are avoiding most exposure, it has been ok. I am very quick to put her on at the first sign of illness or exposure. I've signed her up for art camp this summer (3 hrs in morning for 1 week), and I'm seriously thinking of going on antibiotics for the week. Ironically, we almost have more social interaction now that she isn't so sick all the time. I'm even thinking of signing up for an extra curricular activity. I think the hardest part is that we live in a neighborhood where everyone walks to all three levels of school. It is hard to be different. Sorry to ramble, there aren't many who understand. I've realized we've come along way when we were able to actually go try on clothes yesterday, and she ate food without fighting for every bite. But, we still have a way to go, and it always is so tenuous. When do you ever not worry about a relapse? When are you not watching for every little sign?

Honestly, I don't know exactly why it is helping. I'm not really sure if we were constantly reinfected, or if we just could never get well. Deep down, I know something isn't right with her immune system, and the way her body responds to strep still but it is a balancing act with what my husband and I are willing to do. I have fairly good records that I've charted the trends, but some information that would help is incomplete. Whenever she was around other kids (starting with a one week summer camp last summer) the whole strep cycle started again. We would test positive on the rapid test, negative on a long term culture, but also not show up in the blood work as having strep. I knew she still had strep, especially since her sister would have strep rash. The strep in turn would flare her asthma, and the cycle would continue. Once it started at the camp in July, it didn't stop until after we withdrew from school We did consult an immunologist, who said although technically she failed igg levels, she did mount a response to vaccines so they didn't recommend ivig at this time. They didn't retest pneumo titers, she had failed that 2 years prior and been revaxed. We did not push for further testing or ivig at that time because we wanted to give her a break. My thought at the time was if I don't want to add anything into her (like ivig) the only other thing I can think of was to keep her away from the germs. Since my previous charting seemed to back this theory up, we thought it was worth a try. Besides, the swine flu was rampant, and with her asthma alone, we were in the high risk group. We figured if it didn't work, hopefully at least the girls would have good memories of this year and the time we spent as a family. My hope is for the long term as she heals the germ exposure won't be so devastating. I do hope I'm not kidding myself though. My fear is we're just avoiding the bigger immune issues that ultimately we can't just hide from everyone. I honestly don't think she had the stamina for school. She still hasn't really gained weight she hasn't lost anymore. She's stable. I really think the extra sleep is helping too. Both girls still got to school for girl scouts, and don't miss going to school at all. They love the home schooling ( I'm surprised a little, I used to love school). Anyhow, hope that can help someone else.

Hi all, I haven't posted in a while, we've been quite busy with our journey. I wanted to let you know we've had some improvement, and how that has happened for us. A quick history: I have 2 daughters, dd8 has pandas, dd7 does not. Both daughters constantly test positive for strep. They are 14 months apart in age and very close, so they share everything, if one gets sick, the other gets it. The difference is that the younger daughter never got as sick. DD8 has severe asthma. Missed 5 months of Kindergarten because of asthma. Had rages, OCD, sensory issues, eating issues, urinary frequency, constant strep infections. We constantly tested positive for strep ( no rise in blood markers, always positive rapid test, sometimes negative on long term culture though). Saw Dr. Latimer, had Cunningham test, scored around 172ish, found out had the choreform (sp) movement in hands, also had blood work done, showed igg deficiency. We had already missed 2 weeks of the first nine weeks of school due to illness this year. The school we were in initially refused to work with us, even to give her a 504 plan for her asthma (which was obviously very clearly documented). My husband and I had charted all of our illnesses just for the past 2 years, and positive strep tests (10 in the last calendar year alone), which antibiotics were used, for how long etc. We decided to not use our energy to fight the school system, and focus on getting her healthy. The only time she was healthy was when she was not in school. We withdrew both of our girls from elementary school the day before Thanksgiving and began homeschooling. We were told it would do no good to keep our younger daughter in, she would just bring the germs home. We wanted to try to heal in the least invasive way possible. She is sleeping at least 12 hours a night. We got a season ski pass to try to build up her lungs and stimulate her appetite. We are eating healthy foods when hungry (and not on a time limit). We are doing our school work in about 3 hours a day. We are finally not sick, so she can go outside and play with other kids after school. We've only had one major asthma flare up this winter ( and one round of prednisone). We had spent months and months on prednisone the winter before, essentially treating the PANDAS, b/c of the asthma. We actually did test negative for strep on the rapid test recently. It is slowly changing, but she'll put on clothing and shoes (a variety of outfits without a fight). My husband I and just noticed, we don't fight at dinner, she eats food. Different foods. I haven't had to wrestle her to the ground and hold her down in months to control a rage. I know we aren't healed. We just went on a girl scout camping trip for the weekend, and by the end we were on the nebulizer and antibiotics. One of the girls had strep ( of course we found out later). My daughter tested negative, but the dr. and I could tell, she had the look... We were just early and could see the signs. Hopefully we caught it early. After one dose of antibiotics, her coloring changed. This may just be a band-aid for now... but she is a different child. We aren't keeping her from other children, we're just not keeping her in the sealed building with all the germs all day. I know this isn't a feasible for all, but for us, it is helping. We also just got a good check-up for her lungs too!

We have a really difficult time with clothing and shoes especially. What has happend for us before is when we need new shoes, we'll go to all the stores, try on lots of shoes, get really frusterated, and leave without new shoes. We had to get new boots for snow, and did this over and over, it was driving me crazy. When the big snow was forcasted around here and we truly had to make a decision, the boots that we had tried on several times finally felt ok. I'm guessing she just got used to them through repeated exposure. My thought is that the re-exposure is hopefully the key. Shoes and the switching of the seasons are just really difficult around here. An interesting side note, we pulled our kids out of school this fall to homeschool. We've decided to make the best of it, and got a season ski pass and are teaching the girls to ski. It has been quite a challenge getting her into all of the clothing also! I was especially worried about the boots because they feel so strange. Luckily for us, she got bit by the ski bug, and is so enamored with skiing she hasn't noticed the clothing much after we got her out on the mountain. She still only has one shirt that she'll wear under the ski bibs, but after the first few times gearing up, she's been ok (although she does hate turtlenecks and the neck gators also) I'm going to be watching for more tips too since the switch of each season is a nightmare.

46 pounds. Tonight as I reflect, I really think we were infected while on Augmentin. For whatever reason, Augmentin doesn't work for us. When I've looked over our two year history, every time we do Augmentin, we don't clear the strep so I guess that is why it isn't working as a prophylactic abx. My husband and I were trying thinking over the last two weeks, and the behavior issues were starting to ramp up again, and urinary frequency too. I don't know why I'm so slow on the to put all of these things together. We went Christmas shopping recently, and had to go to the bathroom in every store that we went to. I think we went at least 5 times while we were out. Tonight she told me she feels like she always has to go to the bathroom and her throat hurts (of course after I finally figured out from her crazy behavior something was up. ) How long is reasonable to request for zithromax to clear resistant/recurrent strep, and how what about prophylactic dosages? Is there any research that I can print out to give to the doctor?

Does anyone know if there is a strep specialist?

I know that the amount of strep in our home isn't normal. Both my girls have had at least 10 infections each year for the last 2 years. My younger daughter doesn't seem to have PANDAS. I know alot on the board have done ivig with good results, I'm just scared to put a blood product that comes from so many other people into her. I know they test for all diseases that they know of, but it is so scary. We've had multiple hospitalizations for asthma, and I just want to help my daughter in the least invasive way possible. I was really hoping by reducing her exposure to germs through homeschooling it would give her body a chance to heal. It is so discouraging.

Hello all. Brief update. We are in the midst of a flare up, and I'm not sure which way to go. One of our family's main struggles is not totally seeming to be strep free. I think sometimes we must not have fully cleared our previous infection. Sometimes it must be a new infection. Bottom line, I cannot seem to get away from strep. My dd8 has pandas. Cunningham test results 174, and we were not even in a major flare during the time of the draw. She has no tonsils or adenoids. We have treated the dog and entire family at the same time. We removed both her and her sister from school to homeschool them at Thanksgiving to try and give her a break from the constant assault of illness. We are on prophylactic antibiotics, and have been on antibiotics most of the fall. (Most recently augmentin, but just switched to Keflex). Today I assumed that dd8's sister had strep b/c of PANDAS behavior showing up (the whole canary syndrome) but sister was negative and dd8 was positive. We have had false positive on the rapid test before, but our behaviour is really off, and handwriting is deterioating. Here is this round of questions: 1. Should you be able to test positive on prophylaxis? 2. Is anyone else testing positive on rapid but negative on culture? 3. Does this mean she is a carrier? 4.. I've seen Buster say the whole carrier state is not so benign, how do you treat a carrier? 5.. When we did our immune work up, we failed the igg portion. Dr. Latimer thought ivig was in our future. We saw immunologist who said although we were lower than normal range, we did make reaction to vaccines (except pneumo titers which weren't retested- we had failed those 2 years prior, revaxed, then passed) so immunologist thought we were ok. We average 10 positive streps a year. Our goal has always been to do the least invasive treatment to get her healthy. Are we just in denial, are the low igg levels the key, and we aren't truly getting rid of the strep b/c we don't have enough fighter cells to kill the germs? Would ivig remedy this? At this point, because of our history, we have to wait for the culture, but we are treating with full strengh omnicef.

This doesn't quite answer your question, but it hopefully will add to the discussion. We did just test positive on a rapid test while on augmentin (600mg) but the long term culture came back negative. Our pediatrician said this means we were negative, and that we just have dead cells left over in our throat, but I'm not really totally buying it. In the few days waiting for the culture to come back, my daughter broke out into full strep rash. I kind of feel that is an indicator that things aren't really working right.

Whew, as far as I can tell the abnormal results are that we are in the PANDAS range. I called this morning and they wanted a follow up to discuss treatment options. I guess at this point I left our visit under the assumption that the test was just for additional confirmation, and b/c of immune issues we would be following up with a local immunologist, and we already had a plan of action in place to try. Additionally, Dr. Latimer would not release the results over the phone and I have to call Dr. Cunningham's lab for the results.

We saw her in October, and she reccomended the test to us. I am assuming that we would be abnormal in the sense that it would show PANDAS, I'm just afraid it might be showing something else. From our prior visit, she expected us to be in the PANDAS range.

We've been waiting for our results from the test we took in October. We got a call from Dr. Latimer's office today. She wants us to come up, our results were abnormal and she needs to see us to discuss the results. Does anybody know what else the Cunningham test could results could show? I'm scared to death and don't have any idea what else could even show up in this test. Did anyone else have abnormal results?

Thanks Bonnie, we are pulling our girls out this week to begin the homeschool adventure. I appreciate any advice.

I guess I'll bring this info to our next visit. I can't bear to go again until we are sick again. Which at this rate, will be by Thanksgiving! Thanks for the info.