Kayanne

I called the local labs and asked if they needed a script from my dd's ped...they told me to call the main local hospital because that is where they do these types of blood draws...called the hospital lab, and I was told no script needed...I had it done at the local hospital, and paid up front as a self pay for the fees...they shipped it right from the hospital because they were not allowed to release specimins. I think a lot depends on where you live, just call around explain it and see what you are told to do.

Faith, I believe thay your idea of tracking history is very good, but I think Buster's chart is really just a summary of the Cunningham test results with a couple of other keys bits of info--we are really talking about two different things. I do have an idea regarding getting "history" info about everyone's children. First, It seems that a lot of info gets posted repeatedly...etc...check everyone in the house for strep, higher and longer doses of abx, what to ask your dr, pen and amox can't reach intracellular strep..... So maybe someone would be willing to write a post titled, "What to do if you think you child has PANDAS"--have it pinned up top. Put in the top of it not to add discussion to the thread--pm the member who posts it if there should be a change made. We should add---"Fill out your personal profile with as much information as you feel comfortable. It would be really helpful if you could add a general location of where you live, and under Your Interests in the profile, please give a brief description of your child's history." When a new member posts requesting info, we can add whatever we like to their thread, but also post a quick link to the one pinned up top. I know that I go to member's profiles all the time to look for previous posts and topics, and If we could just look to the left of the screen and see our kids' history there, It would be helpful....plus there is a 50,000 character limit, these would brief....(I don't know how I will keep it so short though...as anyone who reads my posts can attest to) Other things to add to the pinned info would be to go to www.pandasnetwork.org and contact them, definately info about the cunningham test, a link to the article that EAMom always posts about intracellual strep, possibly a link to Swedo's talks. Okay....so is this too complicated? I just think that scrolling through a thread with everyones childrens' history would take me too long...if we could just go to the member's profile and see it right there, it would be more efficient. BTW, I am willing to write the post, and have other members check it before it gets posted...or I will defer to someone else...either way works for me. ~Karen

This may be the thread you were looking for: http://www.latitudes.org/forums/index.php?showtopic=4748

I'm so sorry that you are going through this right now...I wish I had some advice for you...I don't know have any experience with steroids and being sick at the same time...I know this is VERY upsetting for you right now....(hugs)!!!! ~Karen

I'm really glad that everything went so smoothly for your little guy--and I'm continually wishing the best!! I asked Dr. Latimer if after PlasmPh a child would have to get new immunizations, and she said no because all the memory for those is stored in the liver. ~Karen

Well...Becca's score was 112. This was our first time taking the test, so we don't know what she was in the Spring. I'm not surpised at all by this number, in fact I am happy because I think being right on threshold means that her brain is healing. At the time of the blood draw we were not seeing any PANDAS behaviors. She got the flu this week...I'm not sure yet, but I may be seeing a very, very slight bit of PANDAS coming through. I took her and my son to the peds on Thursday afternoon because my son got sick soooo quick--within hours he went from running and playing to loads of coughing, crying, and fever. The ped put them on Tamiflu. Becca's fever was gone by Friday morning, and DS4 was playing by yesterday afternoon, although you can tell he is still sick. The ped said to me, "Well, with the PANDAS we don't know how she is going to react with this flu, so let's try the Tamiflu to lessen the severity of it." So any thoughts of changing practices just went out the window... My husband got sick Thursday too, and he is really laid up...very unusual for him. He took the hit for the kids and had the nasal swab done to test for flu because it would have been nice to get confirmation if it was H1N1--it was negative for the flu, but his dr told him that the test has a high percentage of false negatives...so it was still probably the flu.

Great News! Thanks for letting us know. I have been thinking about you guys...My PANDAS DD6 started with flu symptom Wed night...I've been watching so closely to see if any behaviors resurface...does anyone know how long after an illness prednisone can be given? does it only start to supress the immune system after a month? My concern is that if I give pred too soon after an illness, her body won't be able to fully recover... My husband and I keep asking each other why not add prednisone into the mix when getting IVIG and PlasmPh...wouldn't it help even more with the inflammation? But, we always figured there was some reason to be careful.

How can we find out who is on the board? Has anyone contacted someone else involved in the foundation? I'm going to email them right now to ask who is on the board. I am also worried about a a public rift with the PANDAS issue...I am afraid that only her version and the NIMH version of PANDAS will be accepted, and all of our kids and us as parents will be painted in a negative light--kept on the fringe...it already happening....we just don't need more of it.

I think I got too excited...I just realized that they were probably refering to Sydenham's Chorea.

"Rheumatic fever is an inflammatory disease that may develop two to three weeks after a Group A streptococcal infection (such as strep throat or scarlet fever). It is believed to be caused by antibody cross-reactivity and can involve the heart, joints, skin, and brain." The bolding is mine, but this is the first line in the wikipedia entry under Rhumatic Fever...roads are being paved! http://en.wikipedia.org/wiki/Rhumatic_fever

I think the Alpha and the Beta refer to how the bacteria stains. They are both Strep A http://medical-dictionary.thefreedictionar...c+Streptococcus http://medical-dictionary.thefreedictionar...c+Streptococcus if you vistit these two websites, you will see that the info on each page is identical...thet are both indicated in rhumatic fever...PANDAS is thought to be a similar process as RF...just in the brain.

2006--The first time ever that strep was in my house my son was 16 mos and broke out in hives...rapid strep was positive...there really were no other signs of it...the ped said his throat looked a little red, but not like strep, and he swabbed it to be sure...he was a little surprised it was positive. Like SFMom, I too, have come across "erythema marginatum" as one of the symptoms of RF...but I don't think it is strictly limited to RF...it is known to be caused by strep. The following link takes you to a picture. I looked it up on wikipedia, and hit the photos link http://www.your-doctor.net/images/cardiova..._Marginatum.jpg This website also gives a good description of it at the bottom of the page. http://www.fpnotebook.com/CV/ID/ActRhmtcFvr.htm

Is there a shortage of Tamiflu, or does it have risks involved? I have never heard that it should be reserved for people with underlying medical conditions...only that most of the time it is useless because it has not been given soon enough...antivirals have a narrow window in which they can inhibit the virus. If someone else knows more about this, please let me know. I'm really sorry that you are going thru this again. You are on the right track by having your daughter's CAM score now. You may be closer to Dr. L--She is in the DC area (Dr. K. is in Chicago) Also, she doesn't jump right into Plasmapheresis or IVIG, I think she believes as you do that a course of steroids should be tried first. However, if it is called for (cronic history, or very high CAM numbers) she will suggest that you go right for the big guns. It seems to me that Dr. L's priority with my daughter was to address her brain inflammation, and to protect her from strep...she was reluctant to put her on full strength antibiotics because she had just had a negative throat culture, after testing positive with a rapid strep test four times prior-so we know it was in her throat. My daughter's last course of antibiotics was clindamycin 300mg 3X/day for 10 days...she was only 42 lbs at the time. For our dd6 she prescribed a month long course of prednisone, and about three months worth of 100mg azith daily. During our follow-up (over the phone) she had suggested we stay on the azith as a prophylaxis, however, I wanted to put my daughter on a narrow spectrum antibiotic--pen v k. So now dd6 is on 200mg of pen vk 2/x day (I live in PA -- four hours west of me there is a strain of strep that is resistant to zith). I did express concern that by switching antibiotics, I might see an uptick in her PANDAS because of the anti-inflammatory and immune-modulating properties of azith, and she said to me that that wouldn't happen because, "you have addressed the brain inflammation."--we started the new antibiotic on Sept 11th, and have only seen the very, very minor, remaining behavior disappear. I am anxiously awaiting our CAM score too...her blood was drawn last week so I am expecting it to be low, but from what Dr. Cunningham told Diana P. (it was posted on this thread: http://www.latitudes.org/forums/index.php?showtopic=5349 , I am expecting it still to be in range because it takes approx. a full year to return to normal. I don't have any experience with Dr. K, but from reading this forum, I have gathered that his typical protocol is a 5 day steroid burst to determine if your child will respond to IVIG, and if there is improvement with the steroid, then he moves forward with IVIG. He probably has the most experience treating PANDAS cases. I believe that Dr. K states on his website that IVIG stops being effective by a certain age...but if want to double check that his website is www.webpediatrics.com. I have read someone on this forum say that Dr. L has treated teenagers with Plasmapheresis...so if your daughter's age is a concern, then Dr. L may be your best option. I guess this was a long way of telling you that Dr. L will address the concerns that you mentioned. Good luck...I hope this helps. ~Karen

Faith, I whole-heartily agree with SFMom! When did you send in your sample? Just curious because we had it done a week ago, and I am anxiously waiting for the results. ~Karen

I have reservations too, but do you think if we all joined right from the beginning, we may have an impact on the direction of this foundation...If we just sit back and wait and see, then it may be difficult to re-direct it when it already has momentum? I'm really glad someone is doing it...I've been looking up 503 c non-profits for a little bit...doesn't seem difficult...Dr. Cunningham & Dr. Leckman need some sort of financial support---so maybe we can join this foundation, but be aggressive in trying to point it in the right direction. Beth Malony is asking us to campaign to Oprah, maybe we could do the same to her, requesting that the funds go to Dr. Cunningham. I believe that Mass General is where Dr. Geller is starting his Augmentin study, so that may be why she wants the funds to go there.

This is a great thread about yeast issues: http://www.latitudes.org/forums/index.php?showtopic=4748

http://www.webmd.com/drugs/mono-9383-PREDN...Prednisone+Oral This site mentions to take prednisone before 9am if you are only doing one dose a day. I read at another site (which I can't seem to find now) that the timing has something to do with your body's release of cortisol...just going by memory though. Prednisone is converted in your liver into prednisolone...if you have liver issues then prednisolone is prescribed to bypass the liver. A lot of liquid prednisones are actually prednisolone---I have asked three doctors (including Dr. Latimer) and they have said that they are equally effective. Make sure you are having your son eat/drink with the medication. My DD6 was about 42lbs when Dr. Latimer prescribed pred for her--the first week dose was 10 mg 2 times a day. We saw some raging, but she was beginning to act that way just before we started the pred, wieght gain was not a concern for us because we were having to force her to eat--that stopped by the third week on the pred...and just after we stopped it she had a couple of pimples on her face which cleared within a week. She also has full cheeks naturally, but we think they were a littile larger toward the end. Good luck. Hang in there--we saw some improvements throughout the month, but it was at the very end that we saw a dramatic improvement, and so we continued for two more weeks at 5mg a day....just to be sure we fully addressed the inflammaion. ~Karen

I'm so happy that everything worked out....I've been thinkiing of you guys all week...thanks for taking the time to let us know how things are going...I haven't had a lot of time to be on the forum this weekend (or probably the next few days) so I couldn't respond sooner..I'm just so relieved that it is all okay! ~Karen

Maybe she means that there are a lot of neuropsychiatric issues that arise from PANDAS...some kids seem to have more TS, some just OCD, some have choreiform movements, emotional lability, ADD, Autistic type behaviors, Bi-polar, anorexia.... Okay, and A LOT of doctors believe that the SYMPTOMS of these need to be treated with PANDAS. Neuroplectic meds for ticcing, SSRI's for OCD, Stimulants for ADD. That is a really big issue for us PANDAS parents because we know what the underlying cause is, and we want to treat that directly with Antibiotics, short courses of steroids, IVIG and Plasmapheresis or Plasma Exchange. Now we believe that the Basal Ganglia is being attacked, causing the neurons to "fight each other" and not "hold hands and play nice"--I'm not sure if that is considered the "inflammation" part--but it is believe that the Basal Ganglia is inflamed. So a person's brain is as unique as their life experiences, genetics, environment...it stands to reason that for each child the symptoms will be somewhat unique....there is a wide spectrum of issues and varying degrees of severity with PANDAS. You should not get hung up on the fact that your son doesn't tic a lot, or doesn't have compulsions. What you do have is a clear history of these behaviors surfacing after strep infections. What I see in your descriptions of your son's behavior is classic OCD. You can have obsessive thoughts without compulsions. I was a little confused on this too because my DD6 completely withdrew, was dealing with excessive guilt--had to "tell on herself", was rigid about rules & routines, fussy about clothes...The pediatric psych that we saw said, "Absolutely, you can just have obsessive thoughts that don't lead to compulsions." This could be considered choreiform movements -- it doesn't stop when you sleep (another name for Sydenham's Chorea is St. Vitius' Dance--because of the constant movements) Best of luck on the IVIG on Monday, keep us posted. Will your son be put on preventative antibiotics afterwards?....This is absolutely key to preventing another strep infection. ~Karen

Hi Amy, so sorry that you need to be here...but it is the best place for advice and learning about PANDAS...and for virtual hugs. This thread has a couple of links to Susan Swedo (one of the original researchers) talking about PANDAS. Watch her speeches...they are like PANDAS 101. http://www.latitudes.org/forums/index.php?showtopic=3739&hl=Swedo you can email info@savingsammy.net Beth Maloney is compiling a list of PANDAS doctors. Also go to www.pandasnetwork.org and give them your info, and Diana will try to get you the name of a doctor. This thread also lists helpful doctors: http://www.latitudes.org/forums/index.php?showtopic=5023 Can you tell us what antibiotic and dose your son was originally put on for those two weeks? What does your son currently weigh? Does your son also have OCD? My daughter is 6 yrs old, and had her first recognizable PANDAS episode this spring when we had several strep infections at our house. She also seemed to be ADD at first, and was very emotional. So he has not been put on antibiotics at all this time? Are they only doing one swab, and testing it in the office or are they also sending it out to a lab for a culture? They are probably just doing the rapid-strep test in the office. Strep can be many places in the body, not just the throat...sinuses, middle ear, skin, vagina, rectal, in the gut...you get the picture? Many parents have found that they need to insist that the dr send out a sample for a 72 hr culture because the rapid in-office test is not as accurate. You can also ask for a blood test that tests for Anti-Dnase and ASO strep titers. These are antibodies that your body produces in response to toxins that the strep bacteria produce. They are not the antibodies that are the problem in PANDAS. At the very least, if these antibody numbers are high, then your dr will know that he has had a strep infection in the prior 3-6/6-8 weeks. I think most drs will prescribe antibiotics if these numbers are high, although you might get a dr who argues that these tests only prove a past infection. Another problem with the ASO and Anti-Dnase tests--many PANDAS kids DO NOT get a rise in these titers...so if the numbers come back normal it DOES NOT mean that your son dosen't have PANDAS...many drs are under the false impression that these are tests for PANDAS, and they are not--THIS TEST COULD BACK FIRE ON YOU. This is very IMPORTANT--make sure everyone in you house also gets tested for strep.

alpha hemolytic streptococcus is Strep A...which is the type of strep that Susan Swedo tested for in her original reasearch. So yes, strep A is associated with tics, ocd, emotional lability, ADD type behavior, urinary frequency (just bathroom problems in general). Do you notice a relief of your tics while on antibiotics? How long ago was that stool sample taken...Did your naturopath put you on an anitbiotic then?

Sorry, I'm not qualified to really answer that...personally, I would probably leave things the way they were, and call a doctor in the morning....I'm on the East Coast so now drs offices are closed...you may still be able to reach one yet depending where you live. Although, I don't really think the change in dosing will make a difference....I did read on one website that it is important to give the morning dose prior to 9am because it has something to do with when your body realeases cortisol...but it's been months, and I'm going by memory right now, and I have a busy night ahead of me, so I can't search for it now....sorry

Didn't she just start some a month long course of prednisone? I don't know how long this her sleeplessness has been going on, but Dr. L told us that the two main side effects of pred are mood changes and insomnia. She told us if she couldn't sleep, then to make the morning dose bigger, and the evening dose smaller. For example, for us the amount of pred was 2mls 2X/day...she said if sleep was an issue then do 3ml in the morning and 1ml at night. are you currently on 4mls 2X/day? If so, them maybe you can ask the dr. if it is okay to do 6mls in the morning and 2mls at night....just a thought. ~Karen

When I first read about IGA deficiencies, I had an AH HA moment (not that my AH HA moments have much significance because I have ZERO knowledge of biology/medicine) If 20% of the population are walking around with an undiagnosed IGA deficiency, then could that account for the 10% of people who don't kick strep with a 10 day courses of antibiotics (as per a conversation with Diana)? IGA is the antibody that is found primarily in the mucosal linings, right? I brought this up to a rheumatologist, and he said no...IGA deficiencies in themselves tell us nothing because so many people are walking around with one, don't know it, and are perfectly healthy....apparently the dr who discovered IGA himself had a deficiency, was healthy, and thought that it was insignificant. Am I crazy, or is this a really poor way to come to a conclusion? I don't know...IGA deficiency may have been thoroughly researched already, but I have a feeling the rhumy would have mentioned the research to us if it has....he had no problem trying to tell us about Singer and Kaplan's research. And again I keep going back to drs unwillingness to be aggressive with antibiotics...if the general population was more routinely screened for immune deficiencies, then wouldn't it make sense that the drs would have a better understanding of who might need a longer course of antibiotics...thus decreasing the risk of bacteria resistance...if you fully wipe out the bacteria...it cannot evolve. Maybe I am thinking too simplistically and missing a lot of details because I don't have any formal knowledge of biology, but the whole idea of over-prescribing antibiotics doesn't hold water with me anymore. If a person only has a viral issue, and they are prescribed an antibiotic, how does that contribute to antibiotic resistance? There were no bacteria to mutate to begin with...right? And who knows, maybe an unknown bacteria may work in harmony or become a host to a virus (pulling theories out of my #@@ now!) that is contributing to the rise in all kinds of issues...could a simple antibiotic taken with a common cold prevent them? Probably not...but my brain wandered down that path, and I had to get it out. If a person does have a provable bacterial infection, is a doctor going to say, "No, I cannot prescribe you antibiotics because I think you will be non-compliant and not finish all of the medication." NO! He is going to prescribe the antibiotic...so non-compliance is always going to be a concern with antibiotics. But if drs continue to ASSUME that everyone gets better after a 10 day course (some cases 5 days), then I do think we are setting ourselves up for more resistant strains of bacteria.---and sadly more cases of PANDAS, RF, and such....these are some of the the diseases that we KNOW are post-infectious and preventable...how many more are yet to be realized... If we could just get PANDAS universally recoginized, I think it will open up the floodgates of research into all kinds of autoimmunity and mental heath issues.

Chris, Thanks for that info. Are you under the impression that more specific info will be forthcoming (eg. flu shot or H1N!..what manufacturer...nasal mist or shot?) Or was this just a general warning that Diana wanted to get out? There are some pediatric flu vaccines that are preserative free...was just curious as to the brand/what type and such... Thanks again! ~Karen