momcap

I haven't researched this yet, but we are just starting to look at mold issues and biotoxins in general. I have been putting Borax in with my wash. I was told it's anti-fungal and kills mold. Like I said, I haven't researched this yet, but I had it anyway and started putting it in. We have hard well water and my clothes come up so much cleaner since I started adding it. I've also heard that tea tree oil kills mold. I don't think I would want to put oil in my wash, but I am planning to make a natural spray cleaner with it, for bathrooms and other areas with water. Lots of research to do this week...

Ditto. EMLA cream was magic for us! And the treat got us the rest of the way there. DS used to go into full-out fight or flight. Now he asks when he can get bloodwork because he wants a treat. I tried some big bribes, but later found that a $1.50 candy works best. I never used to let the kids get those sugary, food colouring filled nasty candies at the checkouts. Then one day I knew we had bloodwork coming and I agreed he could pick one, bring it to his appointment, and open it as soon as it was done. That was the turning point. And it's the ONLY time they get that stuff, so it makes it pretty exciting for them. EMLA works great for 2 of my kids. The third one has very fair skin, white blond hair, and the deep veins that go along with that colouring. It doesn't work very well for him, and he still has a hard time. But if they don't have deep veins the EMLA is fantastic!

I think she's in Bethesda, MD. She works with the NIMH. They are currently recruiting for a PANDAS study on IVIG. I think they pay travel expenses and everything if your child qualifies. http://intramural.nimh.nih.gov/research/pi/pi_swedo_s.html http://clinicaltrials.gov/ct2/show/NCT01281969

Sorry, I never found anyone. The closest I got was Dr. D (head of immunology and rheumatology) at Macmaster Children's. He was interested in PANDAS and willing to prescribe prophylactic antibiotics. But he wasn't willing to do anything further and told us to contact Dr. Swedo in the U.S. We had already consulted Dr. T in New Jersey, so we never got in contact with Swedo. I know of a few Canadian families dealing with PANDAS, and everyone I know is using U.S. doctors. Someone just posted a Canadian Facebook page for PANDAS this week. You could join the group and ask for a referral. Maybe they know of someone? I'll try to link it here. Not sure if this will work: http://www.facebook.com/#!/groups/237713506303753/

DS8 (PANDAS/lyme) says all sorts of strange things along these lines. "Everything looks like pictures and I don't feel like I have legs." "Nothing looks real." "The room doesn't look right." "Everything looks far away." "All our stuff looks different." One day he was trying to read but couldn't because the page kept changing colours. He explained to me that he knew it was blue but it looked like it kept changing and it was too distracting to read. Another day the yellow ball in gym class looked "rainbow", even though he knew it was yellow. These kinds of things are pretty common with him. I don't know if that relates to PANDAS or lyme, or the combination of the 2 together. I noticed a recent list of PANDAS symptoms had visual disturbances on it. I was surprised. But I don't recall where I saw that.

I was just reading about xylitol gum. Xylitol sounds like something we should definitely try! Thanks!

Nope, sorry. I tried all the major medical centres somewhat close by - Toronto, Hamilton, London. We've seen neurologists, infectious disease, allergy, rheumatology, cardiology, developmental behavioural pedi, you name it. All the while DS was collecting an alphabet soup of psych diagnoses and wound up in the juvenile bipolar clinic at CPRI in London. Psych drugs didn't help at all. We've been to so many docs I've lost count. The closest we had to "success" in Canada was at MacMaster Children's. We saw the head of Immunology and Rheumatology who was interested in PANDAS, and willing to prescribe prophylactic amoxicillin, but wouldn't do anything further. At that point we had already been in contact with Dr. T and tried Augmentin and then Biaxin. The result was that DS got violent. Then his joints swelled like balloons, he got fevers and rashes, and we came to realize he has lyme disease. He had tested negative in Canada, but a private test at a specailty lab in the U.S. came back positive. In fact, my whole family tested positive, and I am even positive via the Canadian testing. What a shock! None of us remembers ever having a tick on us. So here we are 7 months into lyme treatment (high dose combo antibiotics along with many supportive supplements) and PANDAS DS isn't even the same kid anymore. Last year at this time he was raging almost constantly. I had to remove him from school for safety (he was attacking people, trashing his classroom, running away, etc). Every day was a crisis. He could no longer read or write. He had severe germaphobia that prevented him from showering, brushing his teeth, sitting on a toilet, having a hair cut, etc. He didn't have any friends and was a social nightmare. Life was BRUTAL! Today he had a friend over all day. He had a haircut and a shower tonight, and it was routine. He is caught up academically! This week he confessed all sorts of compulsions that he used to have, that I never even noticed. He told me he's so happy now that they are gone. He told me he's starting to like music again (his passion before PANDAS/lyme brought on severe sensory dysregulation that made him hate all sounds). Today was completely "normal". It was amazingly, wonderfully, unbelievably normal!!! It's still a saw-toothed recovery, but we are having more and more normal days. The bad days are fewer and farther between. Three weeks ago he had influenza and didn't have an exacerbation. I was holding my breath for days and days...just waiting for it. It didn't happen!!! No, I didn't find a doctor to help here in Canada. But don't stop there. My advice - RUN to the nearest doc that will help, no matter where they are. There is hope! My kids are taking a crap-load of antibiotics. It's really scary. They have to have monthly blood draws to make sure their bodies are coping. But it's temporary, and at this point the benefits outweigh the risks. My son has his life back - which means we all do. PANDAS DS's ASO only came down from the 500s after 6 months (!!!) of this high dose therapy. Prior to that he spent almost a year on prophylactic amoxicillin which wasn't even touching his chronic strep. Now his ASO is 300 and still dropping. My youngest still has an ASO in the 600s after all these drugs. But FINALLY his ASO is falling too, so I believe the infections are cleared. My middle son, a strep carrier, finally has a normal ASO and is no longer carrying. I can't believe what a nightmare strep has been for us! Dr. T was a big part of DS's recovery. He was quick to get back to us, and went above and beyond to help us. BUT, we found him very difficult to stay in contact with and eventually we had to move on. So, in my experience, Dr. T is great for a quick start, and will get the ball rolling, but if you are going to travel a long ways anyway, you might want to consider another PANDAS doc for the long haul. Maybe Dr. B? IDK - we've moved over to lyme, so perhaps the PANDAS parents here could give a good PANDAS referral? Best of luck in your search for a doctor. If you find anyone in Canada I would LOVE to know! Feel free to PM me if you want more info about our journey. I hope you can find a good doc soon and that your DS will know healing!

It's a saw-toothed recovery, that's for sure. Overall he is dramatically improved, but not 100%. In the first month his OCD and germaphobia went away! Now he has some stubborn germaphobia that has returned, but nothing as bad as before. He still has some mood lability, but it is manageable. Last year he was attending a juvenile mood disorders clinic, missed 88.5 days of grade 2 (due to rages, manic episodes, and unsafe/unpredictable behaviour), and was scheduled to attend a special classroom for emotionally disturbed children for grade 3. He improved so much he was discharged from the clinic, and went to his regular grade 3 classroom where he caught up academically within 2 months!!! He had previously lost his ability to read and write. He still hates to write, but can do it when absolutely necessary, and he's one of the best readers in his 3/4 split class! Really, I can't believe how much he's improved overall. Vocal tics are 100% gone. No more joint swelling. Pains are infrequent now, usually following a med change, but when they happen they are severe. Usually it affects a knee and he can't or won't walk for several hours. We stopped abx about 6 weeks ago, hoping to run the new borrelia blood culture test, and within a couple of days all symptoms came crashing back. He appeared almost schizo - violent, agitated, self-talking, paranoid. It was terrible. We abandoned the test and got him back on his meds. So he is far from recovered, but the antibiotics are allowing him relief from most symptoms, and the ability to live a mostly normal life. I don't know about doxy changing test results. When we ran the WB I contacted IgeneX and they said they did not have to go off antibiotics for that test. DS had been on a pile of antibiotics already (over a year of prophylaxis for PANDAS, plus several others), and was still on antibiotics when we ran it. His western blot had 5 positive IgM bands, and 4 positive IgG bands. It was a pretty convincing positive test, despite all those abx. Good luck!

My entire family of 5 all test positive. We live in Canada, and the doctors here don't even know about lyme, saying we don't have lyme here at all. Apparently the ticks don't have passports so they get turned around at the border. Our government health websites warn of lyme, but the doctors haven't got the message yet. I don't recall a tick bite on ANY ONE of us, although I have picked engorged ticks off my barn cat, so I know they are on my deer-infested property. My kids are also blond/fair, so it shouldn't be difficult to spot a tick. I am the only one who had a possible EM rash, but it wasn't the proper bullseye. I got a solid red circle on the side of my knee. It looked like a deep red bruise, but the colour was strange, it was perfectly round, and it didn't hurt, so I thought it was odd. I had spent a couple of hours in grass, catching and crating my pasture chickens before I found this strange circle. A week later I had classic symptoms of acute lyme - very sore throat, BRUTAL non-stop headache, swollen glands, high fever, and feeling like I was looking at the world from far away. I have never felt so sick in my life. I went to the E.R. 3 times begging for help, and was sent home all 3 times. The only thing they tested for was strep (at my insistence) and that was negative. I didn't know anything about lyme at that point. I read about it six months later and requested a test, which came back CDC positive. I'm sure my kids have lyme. I had the oldest tested in Canada, and it came back negative. So I tested them all via IgeneX and they are all positive. I found out the "negative" test from Canada had 4 bands positive, not the required 5. I don't understand the requirements for a positive. Where did those 4 positive bands come from, some of them lyme specific, if it's not lyme disease? THe criteria don't make sense. The oldest has PANDAS, severe psych issues, sensory problems, and all sorts of joint and muscle pains, including sometimes severe joint swelling. The middle one had migraines and chronic congestion that have gone away with lyme treatment. The youngest (now 5) was practically crippled with very low stamina and knee and ankle pains. Now with treatment, he's running circles around us, and acting like a 5 year old should.

We used IgeneX, and they report which bands are present, along with the strength of the positive result (i.e. the darkness/thickness of the band that is present). They use a system of + thru ++++ to report the strenth of the positive result. They also use IND, which drives me crazy. IND means they see the hint of a band, but not enough to call it a positive for sure. So ++++ would be a VERY obvious, very strong positive. And IND, since they see something there, would be like a half-positive (?). Here's a link I found helpful in explaining what the "bands" are: http://www.lymenet.de/labtests/brenner.htm#band

Sent PM (private message)

I've been thinking a lot on pulsing too. My DS6 has been pulsed, not for the lyme, but needed med breaks due to stomach aches, diarrhea and general intolerance to the abx. He's doing the best of all 3 kids, but he had the fewest symptoms to begin with. It makes me wonder. He's also no longer a strep carrier (YAY!!!), and his ASO is finally in the normal range. So at least someone in our family has a normal ASO now.

Very interesting information Rowingmom, especially the cyst-busting versus cyst-forming opinions. Thanks! Now I will be able to have a more informed discussion with my LLMD about this. My kids are already on 3 antibiotiocs - 1 for bartonella, 1 for extracellular lyme, and 1 for intracellular lyme. So this would be a forth med! S&S - Can a child take tindamax or flagyl? My younger 2 boys are doing well and need a cyst buster to finish up. If Plaquenil may or may not be a cyst buster I would like to try something else that definitely is one so we can be done with this! Nicklemama - wow, so sorry you experienced this serious s/e. That's just terrible. My kids have been prescribed 100 mg bid, not sure for how long. It sounds like this may be fairly safe for a few months. I haven't started it yet with the oldest because he already complains of visual disturbances, so how would I know if the med was causing something? He's flaring right now after a bout with influenza, and he told me colours are changing when he looks at things (???). For example, the yellow ball in gym class looked like a rainbow, even though he knows it is yellow. He has made this complaint before during exacerbation (couldn't read on coloured pages because the colours kept changing and distracting him), but I haven't heard it since we started lyme treatment in August. It makes me really worried about adding plaquenil. Lots to discuss with our LLMD. I myself have regular visual disturbances - shimmering rainbow lights, floaters, blurry spots, far away lightening flashes, (but never colours changing). My docs have dismissed this as migraine aura without headaches - which never made a lot of sense to me. Now that I know I have lyme it makes more sense, I think. Thanks for the info ladies!

Has anyone here used plaquenil for a cyst buster for their child? If so, do you mind sharing at what dose and for how long? Our LLMD has us adding plaquenil after 7 months of antibiotics therapy, and I'm SCARED! Liver damage, permanent vision damage - yikes! The possible side effects are really scary!

I don't think antibiotics affect the western blot - but maybe someone more experienced will chime in here. My DS8 was on prophylactic amoxicillin for almost a year (for PANDAS), and then 30 days of high dose augmentin and then 30 days of high dose biaxin before we realized it was lyme and ran the western blot. His test came back positive, with 5 IgM bands (some even ++++, and 4 IgG bands. We tested via IgeneX and I contacted them first and asked if he needed to be off antibiotics for the test. They said no, he did not have to be off antibiotics for a western blot. Is there a contact number for Stony brook, that you could ask them directly if the 28 days of amoxicillin will have affected the results? P.S. Our ID doc recommended testing through Stony Brook. He told me to be SURE that on the requisition form the box is checked that says report all bands. Otherwise you will just get a positive or negative without any further information. That was a year ago. Not sure if that's still the case, but you might want to check the form to be certain.

Wow, that's interesting on the pseudo seizures and stuttering. My PANDAS/lyme DS8 had an incident that looked like a seizure just before an active strep infection. This was just before we discovered PANDAS, and this incident clarified the connection to strep and helped us to discover PANDAS. He went on to have 2 normal EEGs (done while in exacerbation), and it never happened again, despite several severe exacerbations. Also, DS5 who has lyme, and some PANDAS-like features (mainly mild OCD and episodic anxiety), had a short episode of what I would call acute stuttering. He was 3 at the time, and started stuttering so badly he could hardly speak. It would take him several minutes to get out a simple sentence, and it was torturous to listen to. Then a few weeks later it just stopped. I completely forgot about that until I read this thread. Oh how I wish I could go back in time and see if it correlated with one of DS8's PANDAS's exacerbations. Corinthdad - DENT - bahaha. Glad you have a sense of humour in the midst of this! Welcome!!

DS8 (75 lbs) takes 3000 mg a day in 3 doses. Our LLMD originally prescribed 4500 mg a day (!!!). I freaked out, we discussed, and we lowered it to 3000, which still worries me, but he's been on this dose since September. Her reasoning for such a high dose is that is has to get to a very high concentration to get into the brain for neuroborreliosis. She told me of some big name lyme docs that are using these high doses, and much higher doses in adults. I still don't feel 100% comfortable with it, but the VERY dramatic gains we saw at the beginning of treatment were on the 4500mg dose of amoxicillin alone, before we added in other abx. And when we dropped to 3000mg, we saw some symptoms return, even though the overall improvement is amazing. I've wondered about going back to that high dose, but it scares me. Now we are supposed to add probenecid which is a booster for penicillin type drugs. I'm really worried about boosting the already super high dose, but I'm also wondering if it will give us the dramatic results again. I'm planning to do a consult with our LLMD about other options, because I'm still not feeling comfortable and ready to do this. I must say so far the high dose of amoxicillin has been amazingly successful, I'm just worried about possible side effects. My younger 2 boys do not have neurological symptoms, so their dose is 1500 mg (they both weigh around 55 pounds). They primarily complain of joint and muscle pains, and those complaints resolved within a few months. We've just added a cyst buster and I'm hoping to complete their treatment soon.

I agree, the lyme itself isn't going to do anything to him, unless he gets bit by an insect that previously bit the lyme infected person. But the person with untreated lyme undoubtedly has a load of other infections - viral and bacterial. Lyme does a number on the immune system and leaves the door open for many other germs.

We were treating with bactrim, but it was not well tolerated (mood s/e), so we recently switched to Rifampin. It's too early to say, but I already think it's doing its job. It's only been a week and he's noticeably calmer and happier. My boys are playing together happily for hours at a time, something that never happened before. He is having more physical symptoms though - tingling in the hands and feet, mild diarrhea, sore soles, joint pains (nothing new, but sx we haven't seen in a while). So I guess we'll see how it goes.

Sent you a PM.

1. DS8 had 2 single episodes of trich last year when he was 7. One morning he had a small bald patch on the back of his head, and admitted to picking his hair out while he was lying in bed. A few days later the small patch was larger. It was horrible. He had plucked the hair by the roots, and it took the better part of a year to grow back in! Thankfully he hasn't done it again. 2. He was in a major PANDAS exacerbation - labile mood, OCD, rage, etc 3. We connected it to PANDAS because he already had the PANDAS diagnosis. He had many acute and debilitating episodes of OCD - trich, excessive hand washing, extreme phobias, etc, that would come on suddenly and disappear fairly quickly. Other OCD behaviours were more constant like germaphobia and evening-up, but he hid those ones really well and we didn't know about them until much later. Now that he's healing he talks about "when I had PANDAS I used to..." and tells us about all sorts of obsessions and compulsions that he successfully hid from us. I'm pretty sure there could be many reasons for trich outside of PANDAS, but I would definitely look at an infectious cause first - strep, lyme, myco, etc. 4. It went away on it's own. He was already on prophylactic penicillin when it occured, and we didn't change anything. I assume it was a flare in response to strep exposure, but who knows. We never saw a great reduction in OCD behaviours until we discovered and started treating lyme.

I find it helps to give with bread, and of course lots of water. It seems to calm the stomach.

Double post

I really appreciate this paper. Finally someone is making a link between PANDAS and lyme in the literature. However, I'm concerned that in juxtaposing the 2 conditions they are sending a message that you can't have both, and that they are considered mutually exclusive. Did anyone else get that impression? I'm certain my son has both. He has symptoms on both sides of their lists in Table 2. He's always had issues, and I'm pretty sure he has gestational lyme. I didn't know I had lyme, but now I know I am CDC positive and all 3 of my boys are IgeneX positive. I don't think we ever would have discovered lyme if it wasn't for PANDAS. The boys got scarlet fever over 3 years ago and all heck broke loose. And here we are 3 years later with only 1 child whose ASO is finally almost normal. DS8 (PANDAS) is dropping but still in the 300s. DS5 is also dropping but still in the 600s!!! DS8 had positive Cunninghams (CamK II at 176 and anti-dop 1 in the 4000s). He reacts VERY badly to strep exposure, even if he doesn't get it himself. How can that not be PANDAS? I'm assuming the lyme infection created an environment that made PANDAS possible, but that's just my theory. Perhaps it damaged his blood brain barrier, or perhaps it messed up his immune system so that he would react this way to strep. I don't know. But I am glad they published this paper. I think it's a good start.

We did ours ahead of time. I ordered the test kit directly from Igenex by emailing them on their website. I took it to our naturopath, who signed the forms and did the blood draw. It cost me more money that way, but I had the results before we got to the LLMD.