nojo

We we positive, probably during the surgery. She definitely had it during the recovery, and was very sick.

Thanks Kelly, forgot to mention, both girls have had their tonsils and adenoids out several years ago. My older one, with PANDAS, I think got strep while recovering from the surgery. It was brutal for her. At this point, I don't know if I need an infectious disease or an immunology specialist. I guess the blood work will help decide. It is perplexing about my younger daughter also having so much strep.

Thank you all so much for the information I have gained on this board. I have been reading alot, posting a little, but because of all of the information I have gained here I have made tremendous progress. Just some of the things you all have helped me with: I have finally gained the confidence to question my old pediatrician enough to find a new pediatrician who believes in PANDAS, who on Friday, just confirmed we do indeed have PANDAS; I am beginning to understand some of the quirks and sensory issues my daughter has may actually be related to the PANDAS, I have gotten my daughter on prophylactic antibiotics until she is at least 18, I am in the process of working with the school to have modifications made to assist my daughter, I have a consultation set up with Dr. Latimer, I understand how certain antibiotics will not work with strep, have met someone in my area from this board, compiled a notebook with her records over the last two years (that really helped open my own eyes), test and treated our family dog, and have gained the confidence to know I'm not totally crazy and to fight for my harder for daughter to get her back. Some of the puzzle pieces are not quite fitting together yet, maybe you all can help. The pediatrician we saw on Friday has seen a few PANDAS kids, her own son has PANDAS, so she is knows it exists. The one thing that she has said to me was that she has not yet seen someone with PANDAS that gets strep with the frequency that we do. Do any of you all get strep all of the time? As I looked over our records, my daughter tested positive 10 times over the last 24 months, alot, but not a crazy amount, until you factor in that she was so sick her kindergarten year (she's just starting 2nd grade now) she was placed on homebound for 5 months. During that time, we did the immunological work-up, and I don't have the copy of it yet, but I know we failed the same area as everyone else, the pneumococcal titers. I know we were also low on one of the IG levels, but not low enough to do anything. We were re-vax and passed at the time. She missed most of Dec that year, homebound all of Jan and Feb, made it back to school in March for a whole 3 weeks before getting really sick, pulled out again for 2 months, and finally ended the last six weeks of the school year. The new ped. just did the immunological work-up, so we are waiting again, but it seems to me that we might have an immune problem also. Do any of you get strep this often? We have had it 3 times since this July 24. One round of antibiotics we took twice as long to clear it, and we did have a negative culture to prove that theoretically it did clear. The only times we don't get strep monthly is during the summer, but we always get it at least one time a summer. The other part that is a little unusual is her younger sister. I don't believe she has PANDAS, but when I request her records, she tested positive 12 times over the past 2 1/2 years for strep. FYI, we have tested the dog (neg), no carrier in the family, treated all of us at the same time just to be safe, tried many different antibiotics. My husband and I don't ever get strep when they get it, but we have be cultured to make sure that we are not carriers ( on more than one occasion). Any input or suggestions?

[i don't think one of us is a carrier, we have all been tested and we have all been treated at the same time even though we have tested negative. Current antibiotic, zithromax, prior, keflex, prior to that, omnicef. The dr. thinks the girls keep getting infected at school, we do get it more during the school year, but we still get it during the summer. We have cultured negative in between rounds of abx, so theoretically we have cleared. This is why we are going to try a diffeent dr. I think our current ped has done all he can do, and I can see why there could really be an underlying immune issue at work. I am also getting both of my daughters records from the pharmacys that we use to get a more comprehensive look at our antibiotic usage. The first of our 3 main pharmacies, shows 10 differnt abx prescriptions filled over the last 24 months. That is only one pharmacy, and we use 3. My husband and I don't get the strep when the girls do, and we don't test positive even without symptoms. I'm willing to be treated again if it would help, but wouldn't I have to test positive to be a carrier? I am looking forward to pursuing the bloodwork with the new dr., I know she has already done it for someone else on the board. Thanks for the kind words, I'm beginning to feel like I'm crazy. The school nurse thinks we have a cleanliness problem in our home. She picked the wrong day to question my cleaning habits! I am going to beat this strep. quote name=ShaesMom' date='Sep 18 2009, 03:15 PM' post='38469]

Hello all. Thank you for such helpful posts. I have posted here a few times before, and haven't been able to in the last little bit. We have been on a bender of late. Add me to the list with the immunological workup. I am in the process of getting a copy of the blood work. Two years ago we had this done when diagnosing our asthma, and guess which part we failed...the pneumococcal titers. We were re vaccinated and I am not sure how we re tested or where we are at now. I can pretty much say we are not doing well. Also, I believe our IGG numbers were low. Currently, we have had strep twice in 6 weeks, we are sorting our food by size and our having violent outbursts. Getting my daughter to eat is a challenge, and finding clothing that doesn't irritate her also a chore. She is finally becoming rational, and not hitting me every day. We just finished our last round of antibiotics less than one week ago, and her sister (who was also on antibiotics) tested positive again yesterday for strep. I have found another pediatrician locally from someone on the board who has had positive results. We have an appointment in two weeks, (the first available) and we are going to request the full Cunningham blood work panel to be done, and if it does not include it, and immunological work up for her and her sister. Something is not right. Both of my children have strep monthly, and one of them reacts violently. I have treated my husband, myself, my dog. I have sterilized everything in my house. We have ripped out all of the flooring and replaced it, we have switched schools, we change our tooth brushes, and again yesterday, we are positive. When I saw about the blood work, I remembered about ours, and I'm getting a copy. I am positive we failed that part of the test and they had even mentioned ivig to us before because our other numbers were low (although apparently not low enough). This gives me some hope. Thanks.

Thank you all for taking the time to write. I've spent alot of the morning crying because I'm just so overwhelemed, and not ready to face another afternoon of the crazies after school. I know I'm fortunate she can hold it together at school, but the harder it is for her to do that, and the more tired she becomes, the more I bear the brunt of her rages afterwards. Yesterday, I just held her with her blanket while she screamed. For those who asked, she is 7, weighs 45 lbs. Currently she is on Keflex 250mg. The dr. put her on that because the time before she was zithromax (ended aprox 3wks) time which was second antibiotic after omnicef. Her sister(6) also gets strep often and is being treated currently. Will she have to be on prophlactic also? I know we are just coming into the start of the school and strep season. I have to do something different. FYI, I did laugh about the bird, Mollie, our cockapoo, is a dog.

It is the start of school, and yes, we have strep. We decided to do things differently this year, and we were diagnosed the week before school started for a change.(instead of the first week of school) This is exactly four weeks to the day after starting our second round of antibiotics for the previous round of strep that didn't clear up. My daughter has been off the deep end for over six weeks now. I can objectively see some progress that we are making. 1. We get strep frequently during the school year, but realized after this last bout, we may be reinfecting ourselves with our inhaler chamber. ( I know, seems obvious now, but even after throwing out toothbrushes and sterilizing the house, we didn't make the connection until recently). Hopefully this will help. 2. After reading about the blood work with the IGG and pneumococcal titers, I am confident we meet this profile. Two years ago, when trying to figure out her asthma, we had this blood work done, and I know this came back to fit the profile that so many others have had because the re vaccinated her, and talked about ivig. I am going to get a copy of the blood work. I need to figure out what to do next, I can't keep living like we are, she is crazy, raging and yelling, out of control. She is obsessively sorting things from her pencil box to french fries. When she gets likes this, she shuts down on what she will wear and what she will eat. We are still on antibiotics, and her pediatrician does agree she has PANDAS, so getting him to believe is not a problem. He said he will put her on prophylactic zithromax (he said one dose every fourth day is what he has read). Should I be trying to control getting the strep? So far that hasn't worked too well. Or should I be trying to control her body's response to strep? We are in Richmond, VA, so I could also go to see Dr. Latimer. Is that something worth doing? For those of you who have seen Dr. Latimer - what would Dr. Latimer be able to do for us? Would it help to bring certain blood work/tests to her? There is also an infectious disease person in Richmond. If prophylactic antibiotics is my goal, do I need to go somewhere else? I want to start with the least invasive route, but I want to help my daughter. We cannot keep living like this. In some ways, I think we have been fortunate because her asthma has been so severe, we end up on prednisone many times a winter, and I think that has kept her PANDAS from becoming as crazy as it could be. When I read other stories, I know it can be more severe, and I am so profoundly exhausted. Also, a while back I had posted about our cockapoo possibly having strep, 92 dollars later, she was negative. Any and all advice is welcome. Thanks for understanding

We just got back. She was positive. The Dr. said "Wow, that test turned positive really fast". I know that the crazy child was not really my child, but I was so discouraged to see this again, especially when we have had special time planned this week. It is so hard to not get discouraged when these insane rages take hold, and you are getting hit, and kicked and scratched. Thanks for listening. We've started the first dose of antibiotics already.

I am at my end. I am waiting for the pediatrician to open again this afternoon to go for our strep test. I am sure strep and PANDAS are back. We have had a good few months, because we ended the year on a six week course of antibiotics. This week, the signs started coming back, none of the clothes feel right, drawers needing to be arranged, and today 3 major rages, and it it only 1:15. Scratching, hitting, screaming (her not me) I am losing it. She is crazy right now, and I'm struggling to keep calm and rational. I hate this. I want my sweet child back. I want to be able to help her calm down, but this stuff is so irrational. Nothing, and everything is setting her off. Sorry, just needed to vent, to people who understand, so I can keep going.

Many on this forum have done a 1-2 mo. trial of Azith (full strength). My dd (currently 55 pounds) has been on 250mg Azith. daily since June. IMO any downside of more aggressive antibiotic therapy is warranted for a child suffering from PANDAS. The immunologist we are seeing is not concerned about our use of Azithromycin. Our ped was initially freaked about the prophylactic abs, but she was forced to get over it after the pediatric neurologist, pediatric rheumatologist (and now the pediatric immunologist) all agreed with our use of prophylactic antibiotics. IMO titers (ASO, anti-dnase B ) are not needed if you already have positive cultures. They shouldn't vary the treatment (unless the doc is confused!). Also, be aware that some PANDAS kids will have low titers (mine did, even with full-blown psychotic pandas and positive cultures). Where titers are useful is if you don't have positive cultures and are looking for some "proof" or "evidence" of a past strep infection. Buster's Aug 24 2008 and Jan 11 2009 posts have some very informative and well-researched information on titers http://www.latitudes.org/forums/index.php?...art=#entry29305. One big caution...some docs are confused about titers and will interpret low ASO/anti-dnase B titers as "proof" that your child does not have PANDAS (because they haven't read Buster's post!) I hope not...but there are no good studies out there on what happens to these kids with repeated exacerbations...do they have a propensity for OCD or anxiety as adults? Our younger dd is a strep carrier. Treating her strep was really important in getting our PANDAS dd's symptoms under control. If your dd could get IVIG covered by insurance (for her asthma) that would be great. I don't know if the asthma dose is the same as the dose used for PANDAS (usually 1.5-2.0 grams/kg over a 2 day period). Some conditions use a lower dose (400mg/kg) and I don't know if asthma would be one of them. IMO...Yes. This is a tough one. Some folks home school. We test our strep carrier dd on a regular basis. Our PANDAS dd is on prophylactic abs. We are working on getting IVIG but will still continue with the abs after that. Yes, there are different strains of strep. I believe some are more likely to cause PANDAS and some are more likely to go intracellular. http://www.ncbi.nlm.nih.gov/pubmed/15293451 Basically that means the strep is "hiding" in epithelial cells (in the throat usually) thereby escaping antibiotics (except for Azith.)I don't believe it is easy/available for a "regular" (non-research doc) to do strain analysis. I don't know about doing a culture and sensitivity (to see what anti-biotic would work) ...one problem with strep is what works in the "petri-dish" (in vitro) doesn't necessarily work in the child (in vivo.) I should also add that (if I didn't mention it already) that Azith. is immune-modulating and anti-inflammatory. The immunologist agrees that this may be a big benefit for our PANDAS child (in addition to its action as an antibiotic). Might help your dd's asthma as well? Wow, thanks for your input. This was a really long post, and I was more writing to sort out my thoughts about what to discuss with the dr. I was hoping for input on what else to ask. Your knowledge is really appreciated, it really helps me understand more. It shows how much longer you've had to fight the fight! I'll let everyone know what happens with the dog.

I would agree with what others have posted (although there is certainly no harm in getting your dog cultured!)...that either your kids are getting repeated re-exposure from another source (school is a biggie; Diana who posts on this forum recently found out that her son's best friend is a strep carrier; my younger dd is a strep carrier...) and/or the strep isn't really getting cleared in the first place (and you need a longer course of a stronger ab like Azith). How long after the 10 days of abs are you doing the re-culture? Usually we wait at least 3 weeks (based on some article we read)...I know some parents re-test sooner (1 week). If it is positive then you can believe it, but if it is negative (after only 1 week) then it may still be a false positive (from the recent abs) and you should test again in a few weeks. Prophylactic antibiotics might help...but IMO you need to really clear the intial infection first. It is possible that the strep is intracellular and prophylactic abs (with something like Amoxcillin) will cause symptoms to "smolder" (Worried dad's expression) but not truly clear the strep. I think your PANDAS dd should have 1-2 mo. (minimum) of Azith. full strength and only then consider a lower dose of prophylactic abs. (Note: Azith. is better than other abs at getting intracellular strep.) Continue to be vigalent about checking family members for strep. Our younger dd (non-pandas, strep carrier, gets strep without symptoms) has cultured positive (so far this school year) in Oct. and late Dec. She was neg in Aug., Nov., Feb., and 2x in March. We didn't test her in Sept. and Jan. There is a lot of strep going around the kid's school this year so I assume that is the source. We are going to re-test her again next week as I (43 years old!) currently have strep (very symptomatic, positive on rapid) to make sure I haven't infected her. This is the first time I've had strep (that I know of) since being a kid and I've gotten tested a few times since last March 08. I actually think I got my strep from my younger dd's classroom (I volunteer in there 2x weekly). We treat our younger (strep carrier) with Azith. when she is positive. The first time she was positive we tried to clear her with Augmentin and that didn't work. In your situation I would consider treating your non-pandas dd also with an extended (at least a double 10 day course) course of Azith, although our non-pandas has been able to clear with just the regular 5 days. Thank you so much for the thoughful and detailed post. I am in the so overwhelmed phase that I need to figure out how to deal with this. I can't keep going on like this. Our vet relented, and did a strep test on the dog ($96!!!!). We are awaiting the culture results. We are currently on augmentin for this last round of strep, and I really don't think it is working. My poor daughter isn't acting right, usually I can tell a big difference by now, and she still doesn't look right. She is very fair, and when she is sick, she gets a deep purple tint in her eyes and face. The ped we saw said to come and get swabbed after we finish antibiotics (10 days) after starting. They won't do a rapid test, but send out a culture. From what you are saying, this would be way too soon to determine. I am trying to get my ducks in a row when we go in, and I think this is so far what I need to discuss with our normal ped. Please (any or all of you) add to the list. 1. Whether or not we have PANDAS (and in my opinion we do) we have to get the strep under control. Is the strep hiding somewhere else in the body? Can we do the extended treatment with azith? Can we start on Prophylactic antibiotics after this course of treatment? Do we need to go to an infectious disease specialist? What is the downside to Prophylactic antibiotics at this point. We are on 2 weeks of every month anyway. 2. Do we need to do the blood test for strep titers? We know she is going to be positive, does it matter how high they are? Will that vary the course of treatment? 3. The thing I thought were just quirks, I realize are more OCD behaviors. The way I could tell we had strep this time was the obsessing over the order of the spoons and forks. (sobbing, couldn't sleep until rearranged). Are we damaging her brain with the repeated infections? 4. What about her little sister? If she is still repeatly infected, is it going negate anything we do for her PANDAS sister? 5. We had bloodwork a year ago showing some low immune levels. When I asked what to do last year (this is all for asthma) they talked about ivig. Should we be retested, is this definitely a benefit to PANDAS? 6. Because of the severe asthma, we have been on prednisone for extended periods of time over the past year. I hear steroid bursts are helpful. Could this be why she isn't very severe with her PANDAS symptoms? (Mostly rages, ocd) 7. I know school plays a role in our strep. We never make it through a whole summer without strep, but it is usually not monthly. How do we deal with school if that is our main source of infection? 8. Are there different strains of strep? Do we need to find out what type she has to figure out what antibiotics will work? What exactly is intracellular strep? I think that is all I can think of for a Saturday night. Any and all responses are welcome. By the end, I may just be a strep expert!

Initially our vet said there was no possibility. He said he checked with other vets on med boards. Yesterday, one told him it is rare, but not unheard of, so he agreed to do the test today. I'll update all of you with our results. Do other people out there get strep with the frequency that we do? (approx 1 time per month)? I am going to start researching the idea that we are not really clearing it totally. You can imagine the havoc this causes in our house. I do know that school is a contributing factor, since we do tend to get strep less in the summer (but we still get it during the summer). Strep seems to be the bain of my existance! I am meeting for lunch someone else from the board today. I feel lucky to have found someone else in my area going through this mess!

Thanks for the thought. Unfortunately, both daughters have no tonsils or adenoids. My younger one, without pandas, does show symptoms, (her big calling card being strep rash), so I don't think she can be the carrier. They are 14 months apart and are inseparable, most nights they even sleep together. Do you think the ent would have other ideas, or at this point should i try infectious disease. I appreciate all of you taking the time to reply, it helps me feel less alone.

Thanks, you've got some good ideas to think about. I know that we have to quit getting strep like this. It is crazy, my friends don't understand, and I am afraid it is seriously damaging my daughter.

both girls have tonsils and adenoids removed. We have run the gammunt from penicillin shot, amox, keflex, azythromyacin, omnicef. Sorry for spelling mistakes, I'm worn out! What do I do with my dog, should I find a vet to test her?

Does this mean that my other daughter, who also gets strep monthly, but without PANDAS, should be antibiotics? At this rate, our ped said he would do it, because although he has reservations, we are on 2 weeks of every month anyways!

Hi Noelle! I'm loving your name - it's DD's middle name - spelled the same exact way. Yep, we live about 40 minutes West of Richmond (we live in the "sticks") but when we "go to town" and work, it's all in the Short Pump area. Colleen's NP office just received my paperwork (they need that before they can make an appointment) and called me today. They're SO pleasant to speak with and I can't say as much about the many doctor offices and staff we speak to on almost a weekly basis. I'm with you - this PANDAS stuff is completely over our Ped's expertise. In fact, I'm quickly learning that there doesn't appear to be anyone capable in the Richmond area to handle this. The one doctor who sounded like she'd be the right ticket doesn't accept insurance - so it's out of pocket expenses ($650 for the initial visit and $225 for subsequent visits... oh and if you want to talk to her on the phone for a consult, it's $7.50 a minute). Today we saw an Immunologist at the MCV Children's Pavilion. Her name was Dr. Anne-Marie Irani, and while extremely polite she was definitely not a PANDAS believer. She kept to her opinion that we needed to seek help from psychiatrists. ((sigh)) Tomorrow I'm calling Cole's NP to schedule DD's appointment. I'm hoping for better results. At this point, I'm just desperate to find a willing ear ... someone who will go the extra mile with us instead of shrugging this off and looking at us as if we're poor unfortunate souls who need to get over their angst of getting their daughter psychiatric help. I wonder if perhaps it would be ethical and appropriate to gather a combined list of people we've seen that haven't been able to help us... or sort of help us. I certainly wouldn't want to upset the doctors (except for that one - Grrrrr), but I don't know about anyone else but I am getting tired of paying these Specialist co-pays for visits that turn up nada. We live in Short Pump, maybe we can meet for coffee sometime. I spoke with Irani's nurse, and she pretty much said to not waste our time. I'd love to compare dr. notes, I'm sorry you had to go in for that. It can be an all day experience going to MCV. I think she would change her mind after a flare up with us! The change is so dramatic, it really is hard to ignore, or say that this is in my daughters mind. I don't see how it would be unethical to help each other. I'll send you my info so we can catch up. It is nice to know there is someone who understands nearby. Noelle

Hi, I have 2 daughters, one with PANDAS, one without. One of our main difficulties is the frequency of our strep infections. Our pattern is diagnosis, 10 day antibiotic, one week to 10 days off, and then the cycle starts again. We generally culture negative after the 10 days, so I think we are clearing the strep. We have no tonsils, We throw out tooth brushes. Could our dog be a carrier? Has anyone ever heard of this? Our vet refused to swab the dog a year ago, but treated her. We are still dealing with strep on a monthly basis, and after calling back, he doesn't think that could be an issue, and won't test her. Should I find a new vet? When one of my daughters gets strep, the other always does, and as you can imagine, it is especially hard on the one that I suspect has PANDAS. Also any other suggestions would be helpful. Should we see an infectious disease specialist? Do prophylactic antibiotics help with the repeated infections? I have got to get the recurrent infections under control! FYI, my husband and I don't get strep, and have been tested and are not carriers. Thanks for any help. Noelle

Hi Lacy. Are you in Richmond, Virginia? I suspect my daughter has PANDAS, and I am at a loss as to who to see to help us. We are beyond our pediatrician, I would love to get the name of the NP from you or Colleen. Thanks for any help. Noelle

Thank you both for your quick and thoughtful reply. I know that something is going on with my dd, and I just didn't know where to start. I'll keep you updated. Noelel

Hi, I am glad to find your forum. I believe my 7 year old daughter has PANDAS and I don't know what type of Doctor to take her to. She has recurrent strep infections (ususally monthly). Each time she gets and infection I can tell because of her radical behavior changes. It is very sudden, very dramatic. She does not have tics, but explosive, violent tantrums. She is not able to gain control of herself, she can't be calmed and is irrational. I have learned to recognized these signs, and now take her immediately for a strep test. It is always positive during one of these episodes, and she has no other symptoms (no temp, vomiting, sore throat)except for the crazy behavior. I don't believe she is a carrier, as she has had negative strep tests in between bouts and after antibiotcs. She has had her tonsils out, and that didn't help. She does have asthma and severe allergies. When she gets strep it also tends to set off her asthma. Do I go to an allergy/immunologist( because of the auto immune issues)? A pediatric neurologist? A child psychologist? An infectious disease specialist? I love my daughter, and don't know how to help her. It can't be good for her to have strep so often, espcially if it is affecting her growning brain. I live in Virginia. Thanks for any advise for a newbie.