momcap

We used a Canadian lab, but couldn't get all the tests he wanted. Our lab here did not have anti-DNase B or myco p tests. We did all the others though. He did prescribe abx for my child, but you can't fill a US prescription here in Canada unless a Canadian doc co-signs it. So our pedi rewrote the prescriptions for us. If you have to fill a US prescription in Canada you can also use www.CanadaDrugs.com They don't take insurance so you have to pay the full amount, but you get an official prescription receipt which you can submit to your insurance carrier.

We did this too. He sent us a list of labs to have done and we did the phone consult when the results were in. I think the actual phone call took about an hour. I found him very helpful. I also had so much to say, but mostly I listened to him talk about how to interpret the labs and what they meant going forward. I found him difficult (almost impossible) to stay in touch with after 2 initial phone consults. But I don't regret doing them and I'm glad he was part of our journey. I also recommend writing down your questions and/or main concerns, and be ready to take notes while he's talking.

BTW - We found a gov't program for children with severe disabilities that pays our out-of-pocket medical expenses. It covers our appointments in the US, travel, accomodations, meals, meds, and even required supplements. It is based on income, so if your income isn't high enough to cover expenses for lyme or PANDAS, you might qualify. Fellow Canadian Moms, feel free to PM me if you want more info. It cost us a bit of money to apply because we had to pay for our LLMD to fill out the forms and write a letter. I thought it was a long shot at best, since I only considered one of my children severely disabled, and he had already improved dramatically with treatment. But our doc made the point that without treatment they would become severely disabled. We got approved! Our medical expenses for 3 children with lyme run over $1000 a month, and it's completely covered!

Welcome khen! This thread is getting older (started in January) and your reply might get lost in the shuffle. You might have better luck getting a response if you start a new thread explaining your situation, or even copy your post from here and use it for a new thread. We have not had a brain scan. I've considered asking, but I'm worried about the radiation and I already know that the basal ganglia and dopamine levels are factors (based on symptoms and Cunningham's tests). I haven't ruled out a brain scan for the future, but for now I don't think it will give us any information that we don't already know. I've already emailed you my doctor recommendations after that "lovely stranger" put us in contact. Hopefully some others will chime in with docs that have helped them. If you find that a PANDAS/PANS diagnosis fits and PANS treatments help, then you are probably going to end up with a US doc. There are a handful of docs in the US that are knowlegeable about treating PANDAS. I have yet to find any doc in Canada with that level of knowledge. Perhaps there is a doc here who will work with one of the US docs via phone consults. Our pediatrician was willing to do that for a while. And I'm very interested to see if Dr. D at Macmaster has furthered his interest in PANDAS. Keep us posted! Good luck and welcome to the forum!

A ticcing disorder associated with strep IS PANDAS, isn't it?! What's the difference? Why are they determined to not call it PANDAS? DS8 continued with verbal tics while on different antibiotic trials for PANDAS - amoxicillin, penicillin, azithromycin, augmentin, biaxin. He didn't stop until we got him on a very high dose of amoxicillin (crazy high at 4500mg/day for a month for lyme, and then dropped to 3000 mg/day ongoing). We have added other abx, but it was just the sky high dose of amoxicillin that stopped it before adding anything else. Our LLMD says the dose has to be that high to reach the brain. He has not had a single verbal tic in the 9 months of lyme treatment so far.

Just thought I would add - my son was on prophylactic antibiotics for almost a year for PANDAS and his ASO did not come down from the 500s. He went on combo high-dose antibiotics (for lyme), and it took a full 6 months on this before ASO began to drop, although PANDAS symptoms began to resolve within the first 1-2 months.

My DS8(PANDAS/lyme) has the pain attacks just like you describe. He will scream and won't let us touch him. He stays exactly where he is and won't move even a tiny bit until it passes. He has joint pains and muscle pains, but they are different. They are quite specific, he's good at describing where it hurts, and he can still move around. But when he gets what I call a "pain attack" he goes into full-out panic and can't describe where he hurts. He screams that it hurts everywhere, and seems confused about exactly what hurts and what doesn't. He gets into hysterics. I almost called 911 last time because it was so terrifying. Thankfully he has only had 1 of these pain attacks since starting lyme treatment 8 months ago, and it was right after a big med change, so I think it was part of a herx. I'm hoping they are gone for good now. My DS5(lyme) gets something similar, but not as bad. Occassionally he gets pain like this in certain places. One day it was his scalp. It was fine if nobody touched it, but if something even grazed his head lightly he would scream out. Another day it was his arm. Another day he fell on the floor and couldn't get up b/c of his leg. I tried to pick him up and he screamed at me not to touch him. It's only happened the 3 times. It seems similar to DS8 in that it hurts to touch or move and he gets panicky, yet different because it's in 1 place instead of everywhere. I think this is from lyme, not PANDAS because my youngest does not have PANDAS.

If Augementin is working I would push for a longer course before considering IVIG. JMO.

This thread really has me thinking! We live on a farm with 35 acres of long grass, woods, a lazy shallow river, and deer everywhere! We moved here 5 years ago to enjoy the property and we play out there as often as we can. We have all sorts of animals - cats (rescued from ferals), dog, sheep, chickens, horse, even a llama. I've taken in orphaned bunnies, squirrels, and raccoons and cared for them until they were old enough to release back into the wild. I keep a huge garden. I'm afraid my ignorance about lyme got us into the predicament that we are in - my whole family is positive for lyme disease. I only ever saw ticks 4 summers ago when I picked them off one of the cats several times. The kids got sick that same fall. I haven't seen another tick since then, but the dog had 3 bullseyes last year. Then I had a probable EM rash 2 years ago after catching and crating our pasture chickens. But I'm also convinced I got lyme first as a young teenager, far away from this farm. I was practically disabled for years with no reason, despite seing dozens of docs. My symptoms resolved in my early 20s, but I'm sure I passed it congenitally to at least 1 of my children. DS8(PANS/lyme) has had major issues since birth. Am I ready to move? No. I could re-home all my animals and move back to the city, but I know many people in cities who have lyme. We have placed ourselves in a greater risk area, so now we are diligent about what we wear, where we walk, and checking for ticks after being outdoors. I've come to accept that lyme is part of our environment. If I had to live in concrete without animals I think I would be horribly depressed and just waiting to die. So we are fighting lyme, being smarter about exposing ourselves to it, and going on with life. I would send my kid on the field trip, but that's just me. I completely understand why others would not.

Good advice from SF Mom. We see an integrative LLMD and do lots of supplements and herbals to support the body through this process. Lots of focus on detox. With meds we start VERY slowly and carefully. When it's possible we start with quarter or half doses and work up very gradually AS TOLERATED. If we can't split doses then we go 1 day on 2 days off, then every other day, then every day - that type of thing. We do everything as the body can tolerate, and if we find it's too much we back off and start again more slowly. If you know you typically herx hard at the 2-3 week mark you might want to stay on a very low dose past that point before trying to go up gradually. For my PANDAS/lyme son we've had to switch a med (bactrim) that just wasn't being tolerated no matter how slowly we went. He's doing much better now that we switched it for rifampin, but he did herx pretty hard on rif. For all 3 boys we have stuck it out through some herxes that we felt were tolerable (barely) and made some great gains. But like SF Mom said, you need a treatment plan that you can live with. It doesn't sound safe to have a herx that causes you extreme pain and spikes your blood pressure. What does your LLMD suggest?

Double post

I could be wrong, but I think the big concern with doxy in children is teeth staining. If she has all her adult teeth it's probably okay, but definitely check with doc.

I have no idea, but my son was only on prophylactic amoxicillin for his second cleaning and everything was okay. I don't know if it was the antibiotics that made the difference, or if it was okay because he didn't have a cavity. I suspect the first time around that the cavity/infection was an opening to his bloodstream, and when they messed around in his mouth all the bacteria in there were able to get into his bloodstream. But I'm just speculating. I really don't know.

It's a tough call! I would do the cleaning because if they get a cavity things get worse. But that's just our experience. I understand wanting to hold off when things are going well - don't want to rock the boat! Can you get antibiotics for before and after the cleaning, as a precaution?

We had an experience like junkyardjean - cleaning was followed by a fever and exacerbation of symptoms. He had a cavity that needed to be filled a few weeks later and again followed with a fever and a REALLY bad exacerbation that began with 6 hours of non-stop screaming and losing his voice. That was before he was on antibiotics. He's had 2 cleanings since being on antibiotics, and we haven't had that problem. But maybe it was just because of the cavity? IDK.

You asked if anyone has heard of something like this before. Yes, we had somewhat similar issues with our DS8(PANDAS/lyme). From time to time his tastes would change completely and nothing would taste "right" and he would practically stop eating for several weeks at a time. He's on the heavy side of normal so although I worried, I didn't do anything about it. It always resolved itself in a few weeks before he got too thin. This hasn't happened in the last 8 months since starting aggressive lyme treatment. He still complains frequently of nausea, which I usually attribute to the antibiotics he's on. But now that I'm thinking about it, nausea and stomach pain was a frequent symptom before he was ever on any meds, so who knows. He had selective mutism for 8 months, and had vocal tics for 2 years. They're both gone with lyme treatment. His tics were not as severe as your DD's, as I recall you posting about an ongoing sneeze tic that won't go away. He had vocal outbursts (hooting, squealing) when he was stressed - more like Tourette's. I'm glad to hear your DD is talking again! Is she being treated for PANDAS? Is she on any antibiotics? There are several antibiotics that can cause the metallic taste too. I'm thinking of Biaxin (clarithromycin) in particular, but there are others.

I agree, it definitely could be a lyme rash. And it makes sense with your history and current symptoms. I would show an LLMD. Good call on taking pictures! I think I had a lyme rash in Aug 2010 but I didn't take any pictures. I'm kicking myself now. Mine was a solid red circle, perfectly round, and looked like a strange bruise. But it didn't hurt. I guess I'll never know for sure. But I wound up in the ER three times in the next 2 weeks. I was so sick I thought I was dying. It took me from August to December to feel better from the "virus" they kept saying I had. Then I read about lyme in December, demanded a test, and it came back CDC positive. I wish I had known about lyme when it happened so I could have demanded treatment.

We have been watching my DS6's TSH creep up with every monthly blood draw. Last month it was over 4 which is considered hypothyrodism in children. This month it is over 6. Has anyone here dealt with this? He doesn't seem to have any of the symptoms (yet?) - no swollen thyroid gland, and he's one of the tallest in his class. Could this be related to lyme/TBI/PANDAS? I don't think he has PANDAS, but he was a strep carrier for years, and he does have some PANDAS symptoms. He is being treated for lyme (positive on Western Blot) and bartonella (clinical diagnosis). Any thoughts?

My DS8 had auditory hallucinations with confirmed active strep. He described hearing a baby that wouldn't stop crying, and later hearing beeping sounds. He knew it wasn't real and it scared him. The next day he had a possible absense seizure while at school. Several months later when he had strep again he had visual disturbances where everything looked distorted. He had the "exorcist" version of PANDAS with violent rages and paranoia. At one point schizophrenia was on our radar. We suspect he had a couple of visual hallucinations as a toddler as well. He talks about giant spiders storming his bedroom door, and to this day believes this really happened. He was not on any medication when all of this happened. Since being on antibiotics it has not happened again. He has PANDAS and lyme. We realized later that he was experiencing severe tinnitis or ringing in the ears. He would bat at the air around his ears and say he could hear a million crickets singing or bees buzzing and they were driving him crazy. I don't think this was a hallucination, but actual tinnitis.

These were my son's major symptoms too - defiance, rages, extreme emotional lability, OCD and vocal tics. No headaches, but knee/leg pains and stomach aches. He has PANDAS and lyme. Like your DD's treatment-resistant myco, my son had chronic strep. His ASO would not come down despite various antibiotics (treatment strength and prophylactic) over 1.5 years. When we discovered lyme and started with high-dose combo abx, his titre finally started falling after 6 months. Last check it was in the 300s, previously in the 500s. IMO if a "regular" infection does not behave regularly there must be something else going on - lyme, methylation, pyroluria, or ?

Susan, I totally agree! I guess the extreme cases make for better television, but if I saw something like that before I knew I had lyme I would have been relieved and certain that I did not have it. I'm not paralyzed. I don't have seizures. I wish they had taken at least a few seconds to flash a list of some of the most common symptoms. Then again, I'm glad for the coverage at all. So it's a start.

Children's Lyme Disease Network on Facebook posted a link to the show. You can watch the entire lyme segment here: http://whatislyme.com/for-those-who-missed-the-dr-phil-show-plus-the-behind-the-scenes-uncensored/

Answers from our experience: 1. Nystatin kills yeast/fungus. It won't kill probiotics, but it will kill saccaromyces boulardii, which is a good yeast in some probiotics. Check to see if your probiotic has this in it. We try to take all of our supplements at least 2 hours away from any medication just to be safe. 2 & 3 Sorry, no idea as we haven't used these. 4. Yes we have done a short antibiotic break. My middle child gets terrible stomach pains, probably from all the antibiotics. We have given him an antibiotic break twice, in order to let his tummy settle. Our LLMD says 1-2 weeks off, and only as long as necessary to let the tummy settle. I would ask your doc about this before you do it, because it probably has a lot to do with what infection(s) they have and what medicines they are taking. My oldest child goes berserk within a day or two off antibiotics, so we can't really give him a break or he will end up hospitilized. I hope this helps.

All 3 of my boys take 250 mg azithromycin pills. My youngest is 5, but he's big for his age and weighs 50 pounds. I don't know about crushing it though - you'll have to check with the pharmacist. I started giving the pill on a spoon of applesauce or yogurt and reminding them not to chew it. But soon they were telling me it's easier to drink with water. Turns out they can swallow pills easily.

S&S, my heart goes out to you! There is so much in your posts that I relate to in my DS8. I have always followed your posts because our kids started out with such similar symptoms, and similar lab tests. We both journied from PANDAS to lyme/bart. What stuck out to me in your post was that she has been off antibiotics for 5 days. Did the violence start before or after taking her off? Why did you take her off? Yeast issues? OR...? I ask because we recently had DS off antibiotics and within days he became violent. We were hoping to have him off for 4 weeks to run the borrelia blood culture test. But he was violent, making threats, attacked his brother, became paranoid, etc. So we abandoned the new test and got him back on abx. During those 2 horrible weeks I had flashbacks of how life used to be before lyme treatment. I was sobbing and a mess. I almost took him to the E.R. because I didn't know what else to do. We have also tried the psych drugs. They didn't help. The only thing that helps DS is abx, but he seems dependent on them. So I'm feeling a bit stuck on how to proceed. We can't leave him on high dose antibiotics forever, right? And the longer he's on them the more I worry about complications. Is it possible to get your DD back on abx for now? Would it help? After my DS's violent episode, we jumped back on abx and within a few days he was back to himself. It's scary and doesn't make a lot of sense medically. But it works for him. I'll be praying for you and your family. Please update us!