matis_mom

I don't know if you are into alternative stuff/supplements, but I would recommend silver. My son has been on it since July, slowly upping the dose to 1 tsp./day. We ALL go the flu this week, except for him (who supposedly is immuno-compromised!) so I think the silver is working, and probiotics are very important too. Also, a friend of mine is from Rumania, and her SIL was saying over there N1H1 is rampant, and what they are recommending is Vitamin D3 to boost immunity. Isabel

Thanks! That answers my question about when to retest. Does anyone know what is the accuracy of those swabs (rapid and culture)? My PANDAS doctor mentioned a blood test, but I can't see getting everyone pricked right now. I just want to have an idea how reliable the throat cultures are. Isabel

I forgot about that!!! I have a friend who gives each child their own tube of toothpaste, makes sense! We are being proactive about disinfecting and keeping things separate. So far, it looks like we have it contained. I got tested, and so did most of the kids, and everyone is negative so far. I am just waiting for symptoms on the other because the ones that I took earlier in the week spiked up fevers AFTER we went in to the doctor. But it definitely looks like flu for everyone else. I think next week I'll just go the Minute Clinic and get whoever else is left tested just in case.

Hi all, One of my kids tested positive for strep on Monday. I took some of the other kids in on Tuesday, all were negative. But, we definitely have the flu going through the house. Some of the kids are still running very high fevers. So my question is, how can I be sure they don't have strep as well (even if the rapid and the culture are negative, it's not 100%), and even for the one that they get a full 10 days of amoxicillin (which might not do the trick), what should I do? Take her back (how soon?) after she's done and have them re-test? I know many of you have gone through this before, so if you can help me get the timing right I would really appreciate it. We have seven children so I need to make sure I bring them in at the right time or I'll spend my whole week at the the doctor's (I already did that this week, we were at some doctor or other every single day except for today!) I am trying to be proactive without driving myself crazy! Isabel

We just had the most pleasant experience at our local "Can'tsaythename" lab. The technician was a bit confused in the beginning but then my husband explained what it was for and she was willing to do it, except since there was no "doctor order" she couldn't find a way to log it in or anything, so she did not even charge us. She just said "YOU WERE NEVER HERE" It's spun, cold packed, and on it's way to Oklahoma!

Got the three youngest tested today, although they barely showed any symptoms (just cranky). They were all negative on the rapid, but they are sending the culture in. I went to my doctor because I have a really bad cough (that's how my daughter started). The rapid was negative, and also negative for Influenza. But, since the cough is so bad, my ears didn't look to good, and considering I'm pregnant, the doctor decided it was best to start Amoxicillin anyway. I asked about Augmentin, but she said that is much stronger and did not think it a good idea. On the bright side, second doctor I met in the last two days who is familiar with PANDAS! So even though they hadn't done the extra swab to send for culture, she did just to be sure. Good to know I can count on them! When I got home my 3-yo was looking sick, and she now has a fever of 103 under the arm, yikes! So I will just bring her back to the peds tomorrow and see if they will just prescribe the abx based on clinical diagnosis, since everyone agrees tests are not 100% accurate. Isabel

I don't have all the particulars of the initial diagnosis, but I know for sure she tested positive for Babesia. Her mom was telling me about flare ups, and my first thought was, is there someone sick in the house? And sure enough, another child tested+ for strep. Fortunately our doctor is very open-minded and tries to follow the symptoms rather than get stuck on a diagnosis. They were having a phone consult today, I haven't heard how it went... Isabel

Wow, what a great explanation... I have to print this out for my husband. I sort of half-get why they act-up when exposed to strep (even while on abx), but couldn't explain it to my husband, now he'll get it Our PANDA ds was experiencing a flare-up over the weekend, and his sister tested positive for strep on Monday. He seems totally fine today (at least during the day), but we'll see, bedtime is our most challenging time of day. We got the three younger kids tested, all negative on the rapid, but the three-year old has a fever of 103 right now! I went to get myself checked, and the dr. said the test is not 100% accurate. I will probably take the 3-yo back to the pediatrician tomorrow to see if they will just give the antibiotics based on the symptoms. With 7 kids I can't wait and see, I need to put out this fire soon! Isabel

I would do whatever can be done, and in the end, even if he does fall behind a year, that's OK too. I know it can be hard at that age to see your friends move on and your left behind, but sometimes it works better that way. I think you can discuss this with him and see how he feels about it and what he is willing to do. I know when they are in an exacerbation period they really can't help themselves, but for the most part I see my 6th grade PANDAS child can pull himself together if the motivation is strong (ie., no screen time until your school work is done!) It's hard to determine sometimes where the line is. Last night he was just going around in circles and I could tell it was going to be a long night if I played his little game (he keeps asking if this ok or that is ok, and whether or not he should go to the bathroom and wash AGAIN, etc.) I was very tired because we have sick kids and he has had up the last couple of nights. My husband wasn't home and I was feeling horrible. I told him to go to bed and that if I had to get up on his account he would loose all screen time for five days... Guess what, even though his sister just tested positive for strep and he is defninitely out of sorts, he managed to stay in bed and have a good night sleep! Just my two cents, hope you can work something out with the school! Isabel

Kathy, I was also debating because we already have so many PANDAS related expenses... but I emailed them explaining the situation, and saying I would do it either way but right now it would be hard for us to send the $200. They said not to worry if you can't pay anything at this time. So if you want to get your child tested, go ahead and request the kit. Isabel

I'm sorry to be dense here... but dd-7 tested positive for strep. They prescribed Amoxicillin (I should have asked for Augmentin!) I'm going back tomorrow to test other kids. Do I bring PANDAS ds who has been on abx since July? Or is it a waste of time/unnecesary exposure to other stuff for him? When I went in today, and believed me I thought about it long and hard because they are flooded with flu cases, they had masks for everyone with flu-like symptoms, it was quite a sight! But it turns out a lot of people going in for the flu are testing positive for strep. Anyway, my question is: can you get Strep while on abx? If he does come +, then what? I suppose we would ask for different/stronger dose? Also, I am supposed to be receiving my Cunningham kit tomorrow (they sent it Thursday, I don't get why it's taking so long!)... Is this a good time/bad time to do it? He has been on exacerbation since this weekend when his sister started with a fever...

We found our current doctor through friends of friends, and we have been emailing back and forth to check on each other. Her daughter's diagnosis was clearly Lymes/Babesiosis, with OCD and other severe behavioral problems. She had seen great improvement in the last year, but now was going down hill. My friend mentioned another child in the family having GI issues and RA, I asked her if they had ever checked for strep. Both our kids experienced flare-ups a couple of weeks ago, and then again over the weekend. Without knowing it, we both took our younger daughters (not the PANDAS/LYMES kids) to the dr. today. When I got back I had an email from her saying her daughter tested positive for strep! And so did mine! We have no contact with each other (except through e-mail), but we do live in the same town and strep is going around like crazy. My point in all of this is even if you have a clear diagnosis for Lymes, PANDAS could also be contributing. I would suggest this mom gets other family members tested. Her son's titers are definitely VERY high (they are actually higher than my PANDAS ds!). If throat comes back negative, check the gut. Even though we have a clear PANDAS diagnosis and the Western Blot came back completely negative, our doctor is still checking every now and then to see if anything comes up. Her theory is that the system is so overwhelmed by strep, it's not dealing with the Lymes at this point, but once we get that under control, other things may surface. So this girl could be experiencing the other side of the coin... now they are getting the upper hand on the Lymes, and strep is rearing it's ugly head.... Also, Lymes often comes along with other co-infectious diseases. Babesiosis is one of those (I read somewhere up to 20% of people infected with Lymes in the North East have Babesiosis as well) It is known to cause sudden onset OCD, even in adults. I wonder if they have tested/are treating for that as well. Isabel

OK, that's what I need to hear then. Thanks! Isabel

Buster, You lost me there! Are you talking about my PANDAS child, or the other children in the house? (PANDAS ds has been on antiobiocis since July, his antibodies were very high then, they have not check recently, do I need this to send along with the Cunningham test?) About the other kids, I asked the nurse at the pediatrician's and she said they ALWAYS do the culture, that's good to know. My PANDAS doctor said even with the culture, it's only 60% accurate. Also, I have a stupid question... how about family members WITHOUT tonsils? My PANDAS ds had them out in August, my husband had them out as a child. I now for a fact (since that's my son's case) strep can be in other places, BUT: can you catch it from some who has strep-throat when you have no tonsils? How do we check them? Thanks for the info! Isabel

I know! It's nice not to have them all complaining and miserable, but I keep thinking if my PANDAS child had had symptoms, things would not have gotten to this point His tonsils showed severe signs of earlier tonsillitis, I had not clue!!! Isabel Well, just came back from the pediatrician... my 7-yo had a fever yesterday and today, so I took her in. Before the doctor even saw her the rapid test was back... POSITIVE! My PANDAS child was a basket-case last night, now we know why! But, looking on the bright side, I saw a new doctor at our peds. and she is familiar with PANDAS/prophylactic antibiotics, and agreed to test everyone. She just said to wait a couple of days until there are some symptoms so we don't get a false negative... It seems weird to be happy my daughter has strep, but I guess that's what it takes to finally get everyone tested. I have a bit of a sore throat and an ear ache, so I'm thinking I will go see my family doctor... another appointment!!! I guess even if that's all I do this week, it will be time well spent. I should be receiving my Cunningham kit today or tomorrow, so his immune system should be nicely out of whack when they take the sample Where did you guys go to do the draw? We have LabCor close by that Mati is not-so-afraid-of, but I wonder if they will do the spinning... Isabel

I can't seem to be able to change the title or subtitle... Maybe we could move it up to "useful threads"? I have no idea how to do that...

Poster name: mati's mom Location: Northern VA Last update: 11-1-09 Childs gender/year of birth/present age: male/1997/12 Brief history of symptoms/when they started: Started showing OCD Feb/09 after bad case of flu (or so we think?) Any previous diagnosis, i.e. autism, asbergers, pdd: NONE PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.) OCD/anxiety Results of any testing done: _____________July 09______October 09 ASO:________ 415___________371 Dnase:_______ 680___________480 Streptozyme:__200___________100 Strep: (Stool Test) Alpha Hemolytic Streptococcus - Moderate / Corynebacterium species - Rare SIgA: 17 (normal between 400-800!) CamKinase: hope to have this Nov09 Other Antibiotic use history: (include weight as a guideline - 80 lbs) Amoxicillin (took for 2 months - no longer taking this) Cefuroxime 250mg 2xd Plaquenil 200mg 2xd Vancomicin 125mg 1/2 capsule every other day Tonsils Out: YES (Aug09) Doctor and what protocol they suggested: Dr. Zachrison/Dr. Mian - Antibiotics and lost of supplements to boost immune system/help detox Tons of testing to see what other things may be contributing. Other doctors that were helpful and why: We will see Dr. Latimer Nov. 18 for second opinion Steroid trials and detailed experience: not there yet! Special section on those persuing IVIG or PEX and what the details were: Additional therapies sought: Supplements used: Other meds used: Nystatin for enuresis Any 'other' pertinent info: I don't have time to fill it all out now but will work on it during the week. Feel free to post your own and come back and edit as necessary. HTH, Isabel

I like this format better than the table. We could each just fill out as much as we can and then edit as we go (we could add at top a line titled "last update"). If they could all be under the same heading, then it would be easy to look up someone's history. The table would be good too, but it would be hard to put all that info on a grid and someone would have to spend precious time maintaining it. I'm going to go ahead and start a thread with it... Let's call it Health History or something like that. I actually have to do this to send along with our Cunningham samples (still waiting for the kit!) Isabel

We are at a teaspoon/day right now, but we started with 1/4 and increased gradually. The brand we use is called "Argentin 23". I know there is different types/strenghts, so check your own bottle for dossage. I think what my ds takes is considered the adult dose. I need to start all the other kids as well, to prevent anything from entering the house! I don't have the full info on how it works, but I remember someone saying that's how nobles survived the plague... they had silver utensils and they unknowingly ingested their daily dose of silver along with their meals!

Here is the info... Madeleine W. Cunningham, Ph.D. George Lynn Cross Research Professor Microbiology and Immunology Director, Immunology Training Program University of Oklahoma Health Sciences Center Biomedical Research Center Room 217 975 NE 10th Street Oklahoma City, OK 73104 Tel 405-271-3128 Lab 405-271-2133 X47455 FAX 405-271-2217 email: madeleine-cunningham@ouhsc.edu ________________________________________ They will get back to you pretty quickly, I seems they are trying to get everyone taken care of before Nov. 12. Best of luck, Isabel

Just a very simplistic home-made theory about the absence of PANDAS symptoms while the child is actually sick... Could it be that all those antibodies that are just messing around with the brain, suddenly find a real enemy and go take care of that for a while and leave the brain alone??? Then when the new infection has been taken care of, they are beefed up, their numbers are strong, they are in high spirits but with nothing to do, so they say, "hey, let's go mess around with the brain again until we find something better to do!" Think of them as an army with no war to fight... Interesting... Isabel

Judy, I understand your frustration, but try to focus on the good stuff for now. At least now you have a clear path to follow. You know what you are dealing with. You know you are not going crazy. And you know your son is not being naughty or difficult, his brain is just sending him the wrong signals. Did you say he is about 12? My PANDAS ds just turned 12. I am surprised at how well he understands what is going on, and how knowing what is going on has helped him not be hard on himself. We are working on the OCD (trying to limit/delay the handwashing and anxiety about germs). He understands it doesn't make sense, and he is pretty cooperative when we try to help him. About lost time in terms of development, do not be discouraged. The brain can heal. Not long ago I read "The Ultra-Mind Solution" and among other interesting things they mention, they state that they've even been able to REVERSE dementia in patients over 70 years of age (which until recently it was thought to be irreversible). It's a good book to read, it will give you ideas of what more you can do to help him in terms of nutrition, exercise, and supplements. Maybe once your son is doing better you can go back to those doctors and let them have it. At least they will think about it twice before they blow another PANDAS child off! I'm still trying to gather enough courage to go face my pediatrician, whom we saw three or four times since my ds started going down hill, and tell her that all the different complaints she just dismissed were all part of the same picture, she just couldn't connect the dots! As soon as flu season is over (N1H1 is doing the rounds in our county so I don't want to walk into a busy pediatric practice in the middle of it!), I will go in there, explain the situation, and hopefully guilt her into agreeing to test everyone else in the family and give us prescriptions as needed. Take care, Isabel

I don't know but when I called they said to bring anything we thought might be helpful. I think it would put her ahead to bring some tests result with her to the first consult if she can get someone to write the lab orders. The first consult for PANDAS patients with Dr. Latimer is 1 1/2 hours, so the more info you bring, the more bang for your buck...(and BTW, the first visit is $580, which seems like a lot but I think it is reasonable for her level of expertise and the time spent.)

Jen, We see Dr. Zackrison in Fairfax. (703) 359-9300. She has been very helpful, but still we are going to see Dr. Latimer in Nov. for a second opinion. I would say contact Dr. Cunningham asap to see if you can get their test done (we just asked for our kit today), as it seems to be the most definite diagnosis. Call Dr. Latimer's office and set up an appointment (301) 530-9200. Other than that, try to get your pediatrician to test for strep (rapid and culture), do the titers, and also have them run a stool analysis and check for strep there. Hope this helps! Isabel (in Warrenton)

I called Dr. Latimer's and they gave us an appointment for Nov. 18th! I guess it's meant to be then. I also asked Dr. Cunningham to send us the kit. What the usual turn-around on that? Isabel