momcap

I'm still here! I only peek in once a week or so now. We're not in a good place and I don't have much to say most days now. I don't think you will find any docs to help in Canada. If you do, please please please share! We tried all the major medical centres around us - MacMaster, London, Sick Kids. No luck. We ran Cunningham's (positive) and then worked briefly with Dr. T, starting Augmentin and then Biaxin. Things went from bad to worse and it was practically impossible to get a response from Dr. T, so we moved on to look at lyme. My entire family tests positive for lyme (IgeneX). And I test CDC positive. My PANDAS DS had so many strange lyme symptoms that could not be explained by PANDAS. So we went to an LLMD/ND in the U.S. Ya, our GP was supportive and helpful, in that he supported us going to the U.S. for treatment, and tried to keep an open mind about what we were doing. He even re-wrote some of our U.S. scripts so we could fill them at our regular pharmacy. He ran bloodwork every month. We did 12 months of multiple long-term high-dose antibiotics along with a supplement program to treat chronic strep infection, lyme disease, and suspected bartonella. Results were nothing short of miraculous, but could never be sustained. 24 hours off antibiotics and DS would go berserk. After 12 months our GP would no longer support our journey. His attitude was - well you tried and you can't keep doing this forever, it's time to stop. He knew DS was non-functional off antibiotics, but he still refused to support us any longer. He sent us to a pediatrician who is following PANDAS in Canada with great interest, but unfortunately she is unwilling to actually DO anything until there is an established protocol. She referred us to a pdoc at Sick Kids who is supposedly PANDAS-friendly, whatever that means. We're still waiting for that appointment. Meanwhile, DS went back to a non-functioning mess. He's currently in a short term psych residential stay, trying to sort out what on earth we can do to help him. He's paralyzed by OCD, anxiety, mood disorder, and sensory processing disorder. He can't change clothes, brush teeth, go to school, or even behave in a civil manner anymore. He is not even the same kid he was 12 months ago. But he's exactly the same kid he was before lyme treatment. You should be able to get an ASO-t in Canada. Our docs run one every time DS needs bloodwork. He's down in the 200s now (was in the 500s), 4 years post-Scarlet fever. There is a Canadian PANDAS FB page, with some people from the East. They might have an idea of docs out your way. I don't know how you can get on the group though, because they moved it to "secret". If you are interested I will try to find out.

We did it a couple of years ago. CamK II in high PANDAS range, and Anti-Dopamine 1 elevated. I'm VERY glad we did, because I personally needed the confirmation. I had been pushing back against my docs saying DS's behaviour was all psych and offering psychotrophic meds, but I was starting to doubt myself. Then this test came back and it was the first test we ran that came back abnormal (besides high ASOs which didn't convince the docs of anything). I finally had some evidence that there was something medically going on, and even though the local docs didn't understand the test or results, I feel like it they finally started to listen to me, and respect what I was saying. Also, an infectious diseases doc we saw along the way seemed to understand the study and told me DS's results confirmed an autoimmune process was affecting his brain. So that felt good to have a doc FINALLY back me up, even though he had no idea what to do about it.

My brother is a mechanical engineer. My sister is a financial analyst. My whole family is heavy on math/sciences, which makes me the black sheep with an English lit degree.

My PANDAS son was a "carrier" for years. Our GP told me carrier status is benign and not to worry about it. But I disagreed with the doctor. I don't believe he ever was a carrier. A carrier shows no symptoms. My DS had major symptoms, just not the typical strep throat symptoms. Instead he got horrific PANDAS symptoms (exorcist version). I believe he had a chronic infection, rather than being a carrier. Regular antibiotics didn't touch his chronic strep infection. It wasn't until we treated for lyme with high dose combo abx that the strep finally cleared and the PANDAS symptoms faded. My middle son is a carrier. Or at least I think he truly is a carrier - always swabs positive, no symptoms. Unfortunately for PANDAS DS this means constant exposure to strep in the house. When the boys were treated simultaneously for lyme they all cleared strep and were healing. Even carrier DS cleared. But then we had to stop his lyme treatment early because his stomach could no longer tolerate all the abx, no matter how we supplemented. Within 2 weeks of stopping his antibiotics, PANDAS DS was symptomatic again. Currently we are back in PANDAS nightmare land. Carrier DS can't tolerate antibiotics so we can't escape strep. I'm looking into getting his tonsils out, but doc is not cooperative and thinks I'm nuts. So in answer to your questions, YES being a strep carrier is VERY significant in the PANDAS world. It means you always have strep exposure, and yes, the strep is still infectious. IMO a regular lyme blood test is not reliable. My DS tested negative, but we went on to do private testing via Igenex and he had so many positive bands his test was lit up like a Christmas tree. He even showed antibodies to lyme's DNA. No known tick bite. So I decided to test myself, wondering if he got it from me, and my test came back CDC positive. There are mixed opinions on Igenex, but there are other labs such as Stonybrook, which will give you a full test report, including all bands. There is also a new test by Advanced Laboratories that is an actual blood culture, rather than an antibody test. I don't know about myco p, but my understanding is that in general IgM is for current infection and IgG is for past infection. However, I've heard chatter on this board in the past about myco not following the "rules", and lyme is also known for this. So who knows? Good question for an infectious diseases doc. I think almost all of our PANDAS kids here on the board are vit D deficient. We had to supplement heavily - 5000 iu for my PANDAS DS - to get his level in the normal range. But vit D3 is fat soluble so it is possible to overdose. Blood levels will need to be checked periodically. So that's my experience with the things you asked about. I hope that helps! Good luck!

If you try abilify, my advice is to start LOW and go SLOW! Everyone reacts differently, but for my DS abilify was a nightmare. Zoloft is the only SSRI we ever tried and he went completely off-his-rocker manic. Very scary. He started talking a mile a minute like he was thinking out loud, jumping from topic to topic. Then he started doing backflips. He's never done gymnastics and can't even do a cartwheel, but he had zero fear and zero inhibition, so suddenly he's doing backflips. Then he ran out on the highway - and this is a kid with OCD rules, rules, rules, and General Anxiety Disorder that is hyper-vigilant about his personal safety. Anyway, back to abilify: The first 2 weeks at the initial dose were really positive. We saw marked improvements in aggression and agitation. But then the doc had us up the dose. I argued, saying it was going well let's wait, but doc kept saying we were no where near a treatment dose yet. So when we upped the dose all he!! broke loose. The worse he got, the more the doc said to give him. I questioned this approach, saying I thought the abilify was causing the problem. The doc insisted abilify would fix the problem. Finally he ended up in the hospital. I agreed, very reluctantly, to go back to the initial low dose that he had shown so much improvement on. My gut said to stop abilify completely, but I was still trying to work with the docs, and hoped for the best. So I gave him the tiny dose and he was very quickly agitated again. The next day we tried one more micro dose, and again we saw extreme agitation. I refused to give it to him again after that. Oh, and besides all that aggression and agitation, during those few weeks he went from a solid 80 pounds up to a very overweight 100 pounds. Poor kid gained 1/4 of his body weight in a month. BRUTAL. But like I said, everyone reacts differently. I would just use extreme caution in approaching any psych drug. I learned the hard way, go LOW & SLOW, and stand your ground with the docs.

My youngest was taking one 250mg tablet per day at age 5, and he weighed just under 50 pounds at the time.

These are great, but is there another one specifically for kids?

tpotter - yes, stomach is a very good possibility. All 3 of my kiddos have chronic stomach pains, the youngest has GERD. What exactly would we do for testing or treatment for strep in the stomach? We tested for h.pylori - all 3 negative. Chad - I don't know about the facebook page. If someone else could post it I'm very interested too. I've been reading your posts to my DS9 and he's amazed that someone else really gets it. DS has also asked me why would God allow this to happen to him. We have many deep discussions and I pray that he will have the maturity and strength to see beyond this and not be crippled by despair. But that's pretty hard in the midst of brutal symptoms. I would love to be able to show him the facebook page so he feels less alone. As for having PANDAS myself - yes, I'm sure I had it too, but got diagnosed bipolar - which eventually just went away when I was in university. I've never heard of bipolar that just goes away. I'm certain now it was PANDAS and I just had a Eureka moment as I was typing this. My little sister had scarlet fever right before all this. Aha!

Chad, thank you so much for sharing your story! My 9 year old DS has an almost identical history - scary how similar!! He has chronic strep infections, appeared "possessed" all of a sudden, extremely high fevers, hallucinations (esp of demons or vague evil black thing), also made a lot of comments about the world "not looking right", had a possible absence seizure, talked about his brain feeling cold, eventually developed loud and disturbing vocal tics (chicken noises, loud screaches, hooting, etc), and OCD that is always present but cycles in severity. He was also amazing at math pre-PANDAS, and now freaks out if I ask him to do a simple math sheet. He is extremely self-aware of what is happening to him, and although I think that is mostly a blessing, sometimes it is also a curse. The only differences I can see in my DS's story and what you wrote, is that DS never had motor tics, and although I fought hard to get his tonsils removed, the doc refused to also remove his adenoids. So here we are several years later, with symptoms continuing and even worsening. Every blood draw shows elevated strep antibodies. He had a baseline ASO of 27 from many years ago (pre-PANDAS), and for the past 4 years his ASO ranges from 240 - 600, which leads me to believe that he has a chronic strep infection hiding somewhere (adenoids?). He had almost 12 months of wellness when we swamped him with combo high-dose antibiotics, but we did not feel safe to continue this extreme protocol. Thank you again for sharing your story! It gives me hope that if we can somehow get to the root of DS's infection(s) that he really can be well again. It was especially exciting to read that EVERYTHING came back again with time, even those math abilities!

I know it's different for everyone but this is what we saw with DS when we treated lyme/bart: Amox alone (for strep) = improved, but could not sustain improvements Zith alone (for strep) = no change Amox + Zith (for strep and lyme) = manageable herx cycles with marked improvements between Amox + Zith (lyme) + Plaquenil (for cyst-form of lyme) = AMAZING night and day difference, HUGE improvements! Amox + Zith + Plaquenil (lyme) + Bactrim (for bartonella) = nightmare non-stop rages Amox + Zith + Plaquenil (lyme) + Rifampin (bart) = brutal herxes followed by amazing improvements - he was almost 100% between herxes

Hi Janice, I could have written your post - my story exactly! Especially "3, 2, or 1 day after spike my son gets sick". Mine too! As he progressed I could also track his flares to others in the house coming down sick. I'm in Ontario - no PANDAS docs here. We are working with a ped who is interested in PANDAS and following the developments in Canada. Unfortunately she's unwilling to do anything beyond a script of amoxicillin, until a protocol has been established here. I had emailed with another mom in Alberta who looked everywhere out there, and no luck either, but that was at least a year ago. If there is anyone in Canada treating PANDAS I am unaware, although I have heard of several docs quietly giving longer term prescriptions under the radar. I really hope you can find somebody, but my guess is you will end up in the U.S. We spent 12 months in the U.S. working with a lyme doc (LLMD). We watched my son healing and it was nothing short of miraculous. Before treatment in grade 2 he missed almost HALF the school year, and life was a nightmare. In grade 3, while on lyme treatment of combo high-dose abx, he had a successful year, made friends, and had a pretty normal life. This was a HUGE big deal because he was almost non-functional before that. Then after 12 months we were forced to stop treatment by our doc here (long story). Now it's grade 4. He's back to all "N"s and "I"s on his report card, hasn't gone to school in months, can barely leave the house, and is stuck on a waiting list for a short-term hospitilization in order to sort out psych drugs. We have tried everything medicine has to offer here in Canada - going to major teaching centres in Toronto, London, Hamilton. Twice he ended up in the E.R. due to adverse reactions to psych drugs. This is a nightmare. I'm going to try this short-term residential thing as a last ditch effort before heading back to the U.S. If that doesn't work (and I'm not holding my breath), I'm going to tell my doc that we literally tried everything and have no choice left. Doc will do whatever he feels he has to do, but I need to do what I believe is in the best interest of my son's health and well-being - which will be going back to the doctor that can offer us a treatment plan with results. I don't share here very often anymore, cause we're in such a sorry state of affairs. I apologize for the gloomy outlook, and lack of hope. I second Ozimum's advice - get to a DAN here if you can. IMO - Conventional medicine has nothing to offer, other than throwing psych meds at your kid. Which might be fine if they worked, but in our case they don't. Meanwhile, I would look into the U.S. docs treating PANDAS, or a good LLMD if you suspect lyme, and plan on heading there. I don't know about Alberta, but in Ontario there are government disability programs that offer financial coverage, including out-of-country medical expenses. I stumbled upon our program, applied, and was shocked when we were approved. My heart goes out to you as you search for a medical provider.

We did 12 months of high-dose combo abx. It was nothing short of a miracle. He was happy and healthy and doing things we never imagined he would/could. Then we had to stop everything except amoxicillin (complicated reasons). He began to decline while only on amoxicillin. Then we had to stop that too, and he is in a psych nightmare of debilitating OCD, severe agitation and mood lability, etc. He is non-functional right now. But a lot of the physical symptoms never came back, so I guess we made some headway. Now we are having a difficult time deciding what to do next.

For me, if me and my kids were all well I would be busy living life and not still here searching for answers. There are lots of success stories out there, but these forums are full of people still searching for answers. I'm certain my oldest son has congenital lyme. He was born angry. I know it sounds dumb to say a newborn is angry, but he was. Within the first days it was clear something was really wrong - he was absolutely utterly miserable. He was always extremely agitated, arching his back and stiff, fighting everything. He hated being swaddled, rocked, cuddled, etc. He cried so much, but large movements would soothe him, like the baby swing on high, or bouncing roughly. I won't say he was inconsolable, but the effort to console him was exhausting. In retrospect, sensory issues were severe right from birth, but it took us a long time to recognize them because we had no previous experience with babies or with SPD. In many ways he was the opposite of Dr. Jones list - he wasn't floppy at all, always stiff and fighting. He hit all milestones extremely early, fighting and screaming with absolute determination along the way. So I don't know what to make of his list, or of our situation. I hope and pray that you will be able to enjoy all the moments with your baby without being consumed by the fear of lyme. It is not an easy road, but it is treatable, and you are already on top of it - already testing at birth, and educated on what to look out for. It sounds like you are doing everything you can, so knowing you've got your bases covered, I hope you can start to enjoy your baby. I wish you all the best!

My DS always had worse symptoms when supplementing D3 or multivitamins so I quit giving them. When he started lyme treatment our LLMD said 5000 iu (because he tested so low). I was worried, but he did really well on this dose while taking antibiotics. My guess is that without the antibiotics the D3 was feeding something (lyme, coinfection, ??), but while the infection was being beaten down by the antibiotics his body was able to use the D3. Just my theory. Edit to add - We tested D levels every couple of months and after 12 months of supplementing 5000 iu he was only in the mid-normal range. Also if you are going to supplement a fat-soluble vitamin in mega doses your doc should be monitoring blood levels periodically.

We used risperdal for mood lability and aggression for DS9 without any success. We continued for several months before weaning off. As I recall we weaned gradually, dropping the dosage 1 week at a time until off. He was on a low dose, so I think we had 2 weeks to get off, but it was a while ago, so I'm not 100% sure. This was all before we found out about PANDAS and lyme, so he was not receiving any antibiotics at the time, and was not taking zoloft or anything else to complicate matters. One thing our doc has always told us - only change 1 variable at a time so you can establish cause and effect. If you drop 1 med while increasing another you won't know if symptoms or side effects are from the drop, or the increase. Better to do 1 thing slowly, and when finished do the next thing. It sounds like we have a very similar situation - DS9 has confirmed lyme, negative on coinfections (but not entirely convinced), high strep antibodies, and PANDAS. He also went manic on SSRIs. Based on our personal experience I am concerned. If an SSRI caused mania in the past, then upping zoloft without the stabilizing effect of risperdal might cause mania again. I totally understand not wanting to tell the pdoc, but would be very concerned playing around with psych med dosages without a professional opinion. We have had some VERY extreme negative reactions to med and dosage changes with our kiddo. Why are you stopping risperdal? Not working? Negative side effects? ...??? Is the zoloft helping? We tried zoloft for 4 days which resulted in a MAJOR manic episode. I would be very cautious. Of course, everyone responds differently, so just because our experience with these 2 meds was negative, doesn't mean your dd's will be. Just my 2 cents, for what they are worth.

We have used PEG powder, AKA Polyethylene Glycol. You can get it over the counter at any drug store. Mix in water, juice, applesauce, or whatever. It pulls water into the bowel to soften the stool, so you have to make sure they are drinking adequate liquids. Our doctor gave us copies of 2 studies on the safety of this product in longer term use. Unfortunately after taking it, DS had to do a #2 at school - OCD nightmare!!! Now he refuses to take it.

I myself have not had a similar symptom, but this reminded me of what a lyme infected friend described. She said it felt like a golf ball was being pressed up into the back of her head/neck. She describes it as the worst of all her lyme symptoms - and this poor woman is so very sick with many disabling symptoms. I don't believe she is experiencing this particular symptom anymore after many years of antibiotics - oral, injections, and IV. She is still very sick though.

This topic has perhaps caused me more mental anguish than any other. Aside from a long stint of vocal tics, and a handful of short OCD blips (trichotillomania, selective mutism, excessive handwashing, extreme phobias, etc), the majority of DS9's symptoms are day-to-day difficult behaviour. And by difficult, I mean alphabet soup of pysch labels difficult. I mean getting suspended and sent home from school over and over again, difficult. I mean suicidal, homicidal, literally tear-the-walls-down difficult. I have put my blood, sweat, and tears (yes, literally blood) into disciplining this child. And when doctor after doctor tells you there is nothing wrong with your child that some good parenting can't fix, well that's when this question really, really stings. After riding this rollercoaster 6+ years, here is my current perspective. I have always maintained discipline. I always will. I believe it gives a framework that DS NEEDS in order to feel safe, or as safe as he can possibly feel while fighting this illness. If, every time he has an exacerbation the rules are thrown out, then his illness is taking control of his brain, his life, his parents, his family, everything. Of course there are times when I feel like I would be just as successful disciplining DS as beating my head against a brick wall. DS does not appear to be learning anything, and the effort is overwhelming and painful. But I also have 2 other children watching and learning from our interactions. And while DS may not be able to behave in an acceptable manner during exacerbations, the groundwork is still being laid for when he feels well. Of course the discipline HAS to be in a solid foundation of love and acceptance - no, I do not accept that behaviour, but I love you no matter what you are going through, no matter what you do, and I am here to help you. The biggest lesson I am learning over the last few years is to adjust MY perspective and MY expectations. In the same way that I wouldn't discipline a 2 year old child for doing something really immature but age appropriate, I have been learning not to discipline DS for actions that are driven by his illness and are in some way an appropriate response to what he is going through. For example, if he has a screaming, yelling fit due to extreme frustration, I don't discipline him for that. I help him work through it if he is able to accept help, and if not I just make sure he knows he is loved and wait it out with him. But if during that fit he lashes out at a person (verbally or physically), or damages property, then he will be disciplined for that action. I often have to wait hours, a day, or even longer, before we can go back and discuss what he did, and what the consequences will be. In the heat of the moment, any discipline is just fuel on the fire. If you asked me years ago if I would consider it acceptable for a 9 year old child to scream and yell and tantrum like a 3 year old, I would have said NO WAY! And I have to confess my first thought would have been that the child was a spoiled brat who got that way because the parents didn't discipline when the child was 3. But after living through this nightmare, my perspective has changed so much. So my answer to the question to punish or not to punish for bad behaviour - is to think through and categorize what is labelled as "bad behaviour". The things that are absolutely unacceptable must be punished. The things that don't really matter, just let them go! My child and I have way too much to deal with already to worry about what other people think is acceptable. And for all that grey area in between - I guess we're both still learning.

DS has complained of "electric shock" sensations deep inside, but nothing visible. I have had visible twitches in my eye, side, and back that looked like mini localized convulsions. They were annoying but not painful. We both experience inner restlessness/agitation - mild for me, severe for DS. I always figured all these were weird lyme symptoms for both of us. Who knows? For DS the shock sensations went away with abx.

My 9 year old has PANDAS/Lyme and would likely still qualify as PDD (he had many Asperger-type symptoms that have slowly faded away with lyme treatment). He takes 5000 iu of vit D3 daily to maintain blood levels in mid-range. But be careful! Vitamin D is fat soluble, so you need to check blood levels periodically. I would check with the doc before taking any dose that is higher than the regular recommendation. As for time in the sun to get adequate vit D, that doesn't work for my family. We practically live outside during the summer months. We rarely ever use sunscreen - tanning nicely in the spring, and not being prone to sunburns. I never thought vit D would be an issue for us. The first time we tested was in august and despite their glowing sun tans from 5-6 hours a day in full sunshine all summer long, my kids all tested drastically low. What a shocker! Lesson learned - don't assume anything. Get the test if you can!

Fixit - My DS took rifampin in addition to amoxicillin, azithromycin, and plaquenil. At that point in his treatment our LLMD said we needed to tackle intracellular, extracellular, and cyst forms of lyme all at once. If we didn't do all this together then the lyme could just change forms and continue to evade the meds. I'm not familiar with the specific meds you listed, but I would assume the doc wants your DS on all of them together if he didn't say to stop any of them. As far as lowering doses, my understanding of rifampin is the opposite - it can make other meds leave the system quicker, so you could possibly need HIGHER doses. Def check with doc though. DS had the worst herx ever on Rifampin - it literally put him on the floor, sobbing in pain, unable to walk. But we pushed through it, and after 2 weeks of horrible pain and flu-like symptoms, he had a major breakthrough in treatment and felt the best he's ever remembered feeling. Rifampin was a miracle drug for him, but it hit VERY hard in the beginning. I wish I had thought of liquid micro-dosing. Sure would have been easier on the system to start slower and build up!

Great article! Thanks! I still have no idea what to do next, so back to research mode. Hmph.

DS9 has had symptoms like you are describing. He doesn't currently have them. However, we went to a new pediatrician this month, and when we went over his health history she insisted anyone with a history of strep illness (chronic strep infections, scarlet fever, etc), should have a full work-up with a cardiologist. It will certainly put my mind at ease, so I'm glad we're doing that next. A couple of other thoughts I had when reading your post - pain near the arm pit could by lymph node, and "air hunger" is definitely associated with babesia, as someone else already pointed out. Good luck!

Lots of talk about bart, i.e. bartonella (cat scratch disease) over on the lyme forum. You can find lots of discussion and info over there if you're interested!

DS9 had chronic pains, and rifampin was our miracle drug too. He had very severe pain that would wake him up at night screaming in agony (usually knees or calfs, but it varied from any/all joints, to muscle pains and bone pain too). He also had bouts of extreme daytime pain, sometimes preventing him from being able to walk for several hours at a time. We've been lucky that ibuprofen has ALWAYS helped his pain. Some other things we have had limited success with are the heat pad and hot showers (work up the temp very gradually). But honestly, these were all bandaids until his pain cleared on rifampin. He was taking amox/zith/bactrim for lyme and bart, and when we felt this wasn't working our LLMD switched out the bactrim for rifampin. DS had a MAJOR herx when he started rifampin. By day 2 he was on the floor in agony, the next day he spiked a high fever, and then went through a classic flu-like herx. Nobody else got sick, and after these symptoms cleared he had a MAJOR breakthrough, so I assume this was a herx. He had 3 more mini-herxes, WAY less severe than the first one, always 2 weeks apart, and since then he has not had a single pain complaint. OCD and mood lability have remained though. IMO, do whatever you have to do to manage pain and make life bearable right now, but don't lose sight of the big picture. Keep fighting to get at the root cause.