momcap

Don't feel bad! You know what is best for your daughter. She is still so young. In our school district kindergarden is completely optional. Some kids go all day, some go half days, some start in January, and some don't bother with Kinder at all. As for writing e's backwards, I would consider that pretty much normal for kindergarden.

Thanks for posting this Emmalily! I found several of those points very interesting. Oddly enough my chronic ear-infection DS4 is my most outgoing and highest achiever. He's a smarty-pants & a show off. (But he's cute so he pulls it off!) PANDAS DS7 is so oppositional that we may never know how smart he really is.

My DS7 had a remarkable personality/behaviour/physical change when he was on penicillin for 20 days. No more OCD, ODD, ADHD, mood disorder, SPD, and no more pain. It was amazing (and scary). Then as soon as it ended he went right back to irritable, chronic pain, etc. And he cultured positive for strep throat after all that pennicillin. Strep is not resistant to penicillin in a test tube, but in the human body it does find ways to hide (intracellular, etc) and pen has a fairly high failure rate in treating strep.

When getting back a high CamK score is the best day of your life!!!

If you email IGeneX they will reply with the latest price list. I don't know what test to suggest. We haven't done our testing yet, but I am planning on doing the 6050 Lyme panel when I have enough cash. You should probably post this question on the lyme forum. I'm interested in the answer too, as we also have a negative western blot, but plenty of strange lyme-type symptoms.

This doctor is from the University of Calgary in Alberta, Canada. I think she found the only doctor in my entire country who has actually heard of PANDAS. JK, well sort of... So glad to hear this is moving forward. I hope their research goes a long way to help our kids and the PANDAS kids to come.

Yes, I have looked at CamLyme. I am sending them an email asking about Lyme docs in Canada. If I find any I will share that info here.

Scarlet fever never occurred to me. My other 2 boys had it in January and they were bright red from their heads to their feet. I've never seen a rash like that! DS7's red face went away, but now his throat hurts and he's saying he thinks he has strep again. Geez! He also had a stomach ache this weekend, but I thought that was from the Augmentin. This morning he's lost all gains. Back to being berserk. I'm going to bite the bullet and send blood to Igenex too. It's so hard to know what's going on and what to do.

I just booked DS7 for a tonsillectomy and now I'm having second thoughts. Is anyone NOT doing this, and why not? I haven't done my research yet, but it doesn't seem right to remove part of the immune system in a child with an immune issue. The ENT assures me the literature indicates that it doesn't make a difference. I don't know. I believe we've been fighting the same strep infection since January. Despite many antibiotics (penicillin, amoxicillin, azithromycin, augmentin) his ASO is still high at 539. (We have a baseline of 27 from an ASO drawn before January, so he doesn't just run high numbers.) The strep seems to move back and forth from his sinuses to his throat. I'm also wondering if it's in his gut. Any advice? Thanks!

I suspect my DS7(PANDAS) may have congenital lyme. I remember a lyme mom posting that congenital lyme won't show up on blot tests because the body won't make antibodies to something it doesn't think is foreign. Is this true? Is there any point in paying for Igenex? He has a negative western blot, which I know doesn't mean anything. Not sure what to do next. Does this sound like lyme/congential lyme: When I was 14 I was very sick for over a year. I caught one thing after another and just couldn't get well. I never found out why/what made me so sick. I had ample opportunity to be exposed to lyme, as I practically lived outside, running around the bush, often barefoot and horseback (yikes!). After I got "well" I had chronic pain and my mom took me to every doctor out there. Nothing significant was found (one slightly compacted vertibra and elevated levels for JRA, but not high enough to diagnose). After years in pain I became depressed. Antidepressant made me manic and I was diagnosed bipolar and drugged. In my early 20s I dropped the drugs and realized I was well - physically and mentally. I have occassional pain flare-ups that are scary, but only last a few days at worst. I can go months, sometimes over a year without any symptoms at all. Now my DS7 is going through the same pattern - a few years ago he was constantly sick. Then the psych stuff - ADHD, ODD, OCD, mood disorder, selective mutism, and more. Along with that he's been in signficant pain for 4 years - mostly joints, sometimes muscular. He lost his smell for a year and then it came back on over-drive so that every smell overwhelmed him. He has a sensory processing disorder that is debilitating. He definitely has PANDAS - elevated strep titers with exacerbations, CamK 178. He's been on one antibiotic after another since the end of August. We initially saw amazing results (personality transplant!), but everything came crashing back whenever the antibiotics ended. Twice he got infections while on antibiotics! Now he's on Augmentin, and herxing? He is strikingly improved. His principal and teacher both called me today to say how amazing the difference is. He is reading again. He is doing assignments. He is happy and relaxed. (2 weeks ago he was throwing chairs and ripping up assignments.) BUT, he is in pain again for the first time in 2 months. Tonight his face is red except around his mouth which is pale. He says the medicine is making him feel "coo coo". He says his tummy and arms are "fuzzy". I'm scared. I know I'm on a lyme forum so of course everyone here is going to say this sounds like lyme. Is it worth doing Igenex if I think this is congenital? AND, does anyone know any LLMDs in Ontario, or anywhere else in Canada? Thanks!

Thanks Emmalily! I am eager to try this with DS7. He was an early reader, but lost his ability to read this spring. I thought he was just being defiant until I began to understand PANDAS. He started reading again last week. He also started listening to music again the week before that. I am excited to see what audio books I can find!

We're in Southwestern Ontario. My kids have been on zithro many times for ear infections and sinus infections. More than once we have had to do a second course of it, or change antibiotics to clear an active infection. It doesn't seem to work well for us.

DS7 started Augmentin (500 2x/day) on Wednesday night. Yesterday he growled at me all morning. Same thing in the evening after school. This morning he woke up in pain (hasn't had pain complaints since starting antibiotics in Sept). After the pain let up he was hypomanic with pressured/repetitive speech. He told me the new medicine is making him "coo coo". Then he sang, "I'm coo coo. I'm coo coo. I'm coo coo, coo coo, coo coo" over and over until the bus came. I'm wondering if I should have kept him home from school? Yikes! Is this from Augmentin? I read that clavulanic acid has antidepressant properties. Or, is this some kind of herxing? Whatever it is I DON'T LIKE IT! We haven't seen manic/hypomanic in almost a year. We'll stay the course a bit longer and see what happens. Strange that so many have had negative reactions to augmentin...hmmmm.....

I agree with DCMom. I would hate to see what a major dental problem would cause. We never noticed any problems with the cleanings, other than anxiety beforehand. But we didn't know about PANDAS then, and we weren't looking for any association between his behaviour and the dentist. Fillings are another matter. This summer DS7(then 6) had his first 2 small cavities filled. This was done at 6 p.m. After he came around from the gas he started repetitive shrieking, which he continued doing until he passed out at 1 a.m. We didn't know about PANDAS then either. I am used to the rages, the meltdowns, and the shrieking. But after that many hours of non-stop shrieking I was rattled. For the rest of that week his throat hurt and his voice was strained, and that led to more shrieking and meltdowns all week. Not fun.

Same story here - ASO at 512 in August, now 539 despite penicillin, amoxicillin and zithro. I am also confused as to why it isn't going down. Is he still infected? Or is his immune system going haywire still trying to fight an infection that isn't there? Or is it normal for levels to persist and rise this many months after an infection? I just don't get it.

Hi Tascha, I am mostly a newbie myself. We just heard about PANDAS this summer. I'm not sure I have any great advice to offer. I'm just trying to get my own son well first. But they do sound very similar. Here's our journey in a nutshell: My DS7 has similar symptoms - no motor tics, but almost all other PANDAS symptoms. Most troubling to me is his chronic and severe pain episodes. We did 4 years of psych therapy and meds before hearing about PANDAS. Last January he had one episode of mania with auditory hallucination (he told me he was hearing crying and beeping sounds that he knew weren't real). A week later he cultured positive for strep. I never connected those 2 events until hearing about PANDAS this summer. Then this fall he was talking about not feeling real and how all of our stuff seemed different. With the return of the "crazy talk" I had him cultured and sure enough he was positive. He has had negative cultures too, so I don't think he's a carrier, although our doctor questions whether he might be. Our 5 year old is a carrier - always positive and no symptoms at all. I would get throat cultures and titers on the whole family. If this problem is fairly constant then chances are a family member, or best friend, or even a pet, is a carrier. In our experience, ibuprofen is a good bandaid. It helps the psych symptoms as much as the pain. We also did a 10 day trial of penicillin and saw a complete transformation. After 5 days he did not have any pain, started sleeping through the night, and had a completely different personality - calm and happy. It was amazing. Unfortunately it all came back 24 hours after the penicillin trial ended. We are starting augmentin this week and I'm feeling hopeful. I also had the same symptoms myself as a teenager. At times the pain was unbearable. My mother took me to every doctor under the sun and we never got any definitive results. I remember seeing a rheumatologist who said my levels were higher than normal, but not high enough to diagnose juvenile rheumatoid arthritis. In my early 20s I just got better. I have no idea why, except that perhaps my immune system finally matured and started working properly. Who knows? In any case, welcome and I hope you find lots of answers here. I know I have. Working with a PANDAS doctor has been a critical puzzle piece for us. We're in Canada, so we are consulting over the phone. Far from ideal, but much better than any other option we have found so far. I am also working hard to educate our doctors here, and making some headway. Good luck and welcome!

Thank you so much for this post. This journey is such a rollercoaster. I hit rock bottom last week, and just wanted off the ride. On Tuesday I got back labs that DS7's strep antibodies are even higher. On Wednesday he was sent home from school for tearing his work sheets and throwing his chair. On Thursday he woke up with his pupils so dilated that his eyes were black (they are normally light blue). He was scary. At school he kicked over his desk and ran away and hid. Thursday night I sat through his parent-teacher interview and listened to the teacher tell me what a horrible boy he is and how he is so mean, and how he's failing everything because he's too defiant to do any work. She actually said, "He will never be like you and me." Talk about rock bottom. Why God? Why him? Why me? Why this? I don't know if I can link anything here, but I'm going to try. Because at that rock bottom place I came across this song and it touched me and kept me going. This thread sounds like an appropriate place to share it. So I hope this is okay. And in the end I believe the teacher is right. He will NEVER be like you and me, because he is being forced to learn some very hard lessons so early in life. He will be stronger, deeper, and better some day for all of this. That is the hope I cling to. One day at a time...

I am so confused! We heard about PANDAS in August and did an ASO on DS7(then 6) which came back at 512. That was followed by 2 rounds (10 days each) of penicillin which brought a striking improvement. While still on the second round of pen he took a turn for the worse. We cultured the family and ds7 had a positive throat culture, along with dh and ds5. Following that culture we did 2 rounds of zithro, during which he was really sick with fever, headache, stomach pains, puking, sore throat, etc. The second round seemed to settle things down. His cultures after that were negative, but the doctor still put him on amoxicillin because the psych symptoms (irritability, mood lability, OCD) came back after the zithro ended. After 10 days of treatment strength amoxicillin we moved to prophylactic amox. On prophylactic amox he's WORSE than ever. He's freaking out at school, kicking his desk over, ripping up school work, getting stuck on numbers, wearing shorts in the snow, etc. And home is even worse. We retested titers and they are now 539. What does that mean??! Aren't antibodies supposed to drop after treating an infection? Does he still have a strep infection, or is all this the result of the original infection? Has anyone had a similar experience? Is this "normal" for PANDAS? We also got Cunninghams back at 176.

I wish we lived closer! Sending best wishes from Canada to Amy and Lance.

Thanks for the good news. I really needed to read that tonight!

Thank you Tampicc and Vickie for your help and advice. I'm anxiously awaiting Tuesday to see what Dr. T recommends. Our pedi says he is open to Dr. T's advice. I sure hope so. My ds7 is more or less chronic PANDAS. He has episodes that are much worse, but in between he's miserable too. I don't know if that is because it's been going on for 4 years, or if he has another underlying condition (maybe lyme???). We're looking at all of that too. I had the whole family tested in September and ds5 & ds7 both cultured positive for strep. Ds5 with no symptoms at all, ds7 was complaining of feeling sick and in PANDAS exacerbation - but no sore throat or fever. I've had ds7 retested twice - both negative, but he's been on antibiotics. I haven't had ds5 retested because the doctor has declared him a carrier and refuses to do anything further for him. I guess I could bring him to a walk-in and beg them. I'm anxious for Tuesday's consult and we'll go from there.

Thank you! We desperately need to hear the success stories!

Wow, thanks so much Vickie! They do sound similar. Do you mind sharing what treatment(s) have led your ds to wellness? We are just at the beginning of this journey. We only heard about PANDAS in August and I began to realize how much of ds's behaviour is OCD. He has high ASO, and cunninghams at 176, so now I'm convinced we're dealing with PANDAS. We just started prophylactic antibiotics (500mg/day amoxicillin, which is NOT helping). We have a consult with Dr. T on Tuesday and I"m anxious to know what he will suggest.

My ds7 gets words and numbers stuck in his head if he hears someone else say them. Especially anything repetitive. Then he can't think about anything else, and it interferes with his ability to think clearly. This often precipitates a rage or meltdown. He won't shower or brush his teeth. He won't change clothes. He won't get a haircut. He gets extremely upset about any and every change - new furniture, new anything, change in routine, etc. When he was 5 he was threatening to jump off the roof so he wouldn't have to turn 6 because he wanted his number to stay 5. He is afraid of poison, germs, chemicals. He has phobias - monsters & ghosts that he insists are real, and especially spiders and bees. He refuses to touch certain people, mostly everyone outside our immediate family, as well as one of his brothers. He often can't go into the bathroom, sometimes can't even go outside of our house. Once in the bathroom he will not sit on the toilet (hasn't in 3+ years). He strips naked and stands on the toilet seat, squats and hovers there for 45 mins plus. He always thinks he doesn't have all his poop/pee out and sometimes stays in the bathroom screaming. Sometimes he refuses to wipe himself. Other times he wipes until he bleeds. He is very worried about contamination from feces. He refuses to go in our barn or even the barnyard (we live on a farm). He screams whenever someone coughs or sneezes and he doesn't think they did a good enough job covering. He goes into hysterics if he gets mud or ink or anything else on his hands. He literally hyperventilates then begins shrieking at the top of his lungs over and over, starts shaking, and loses it. Not sure what else, but those are all on my mind right now...Can you tell he's in exacerbation??!

Thank you!