momcap

Finally some answers! I took everyone in for ASO titers which came back normal and I was really disappointed. BUt I also asked for throat swabs which came back today. I was very surprised that our carrier is the healthy "normal" child. I was expecting it to be the asthmatic, chronic ear infection one. Geez! At last I feel like the puzzle pieces are coming together. PANDAS DS(7) really has an impossible time getting along with CARRIER DS(5). He refuses to touch him and is so mean to him - has been since they were babies. This week he told me he won't touch him because "I just really don't like him." It breaks my heart. I don't know why I didn't see this coming! So basically one kid is "allergic" to the other kid. How do we eradicate carrier status? Or do we need 2 separate homes. JK!

Hi Emerson, I just wanted to say thank you for your openness and honesty on this forum. You are such a brave person and I applaud your courage. The more I read on this forum, the more I am convinced that I had PANDAS as a young teen. My mother took me to every doctor she could find and we never really got any answers. I am one of the lucky ones because my symptoms diminished greatly in my late teens, and were completely gone by my mid twenties. Now that I'm trying to sort out the physical and emotional distress in my 7 year old ds I am having an A-HA moment, realizing how many of these same things I dealt with, just in different ways. Your math example made me laugh out loud. I'm the same. I breezed through every math class I ever took, even getting 90s in university calculus without going to class. But I still need a calculator for simple math, and I'm ashamed to say I never memorized my times tables.

Ds7 has food sensitivities to casein/dairy, corn, egg protein, and peanuts. We eliminated all of these for 6 weeks and ended up with a very angry, raging monster. Due to ds3's severe sensitivity (chronic ear infections & asthma) we stayed off dairy for 1 year. We also added in probiotics. That winter we only had a couple of regular colds - no mystery fevers, no infections. Ds7 still struggled at home, but was able to hold things together at school, which is a significant improvement for him. After a year we added dairy back in as ds3 was now able to tolerate it without getting asthma or ear infections. However, we saw a return of the mystery fevers and frequent infections (throat, sinus, ear) in our whole family, and even a bout with scarlet fever. Needless to say we're going back to dairy-free.

Wow, that makes a lot of sense. Thanks for attaching the article. Now I feel better about taking ds to see a Pediatric Rheumatologist.

Thanks Kara. I printed everything I could find on PANDAS and gave it to our pediatrician, including the NIMH director's post. I also directed him to the website you mentioned. He's actually heard of PANDAS and believes it exists. He thinks the protocol is to treat any active infection with a standard course of antibiotics and PANDAS will go away. I think I overwhelmed him with all the info because he is no longer returning my calls. I booked an appointment to talk to him about next steps, but the soonest he can see us is Oct 22nd. Our system here in Canada is pitifully slow due to a major shortage of doctors. I will definitely show ds the website for kids. I just checked it out and it's great! I might try the olive leaf extract. We've tried so many supplements. Nothing seems to work for any length of time. But I guess it's always worth another try. Right now he is supposed to be taking probiotics, Vit Bs, anti-strep drops, and Omegas. He is convinced they are all poison, so we're at a stand still. But I will at least look into it. Maybe it's something I can mix in without him knowing. Nancy - I think we may end up going to the U.S. when all is said and done. I just can't find anyone here in Canada. It doesn't seem fair when I pay my taxes into the Canadian health care system, only to be forced to pay out of pocket in the U.S. But I guess if I haven't figured out life isn't fair yet, then I'm really in trouble. Thanks for your replies. I really appreciate knowing I'm not alone in this. It gives me strength to keep on going on.

Has anyone had any luck seeing a Pediatric Rheumatologist? We are trying to sort out this PANDAS puzzle and I have no idea what to do next. Last night ds who turned 7 this week was sobbing on my shoulder, "Why am I like this? Other kids aren't like this?" What do I tell him? What do I do?!! (I'm needing a little support, or maybe a kick in the behind.) After hearing about PANDAS this summer his ASO titer came back at 512. We did a 10 day trial of penicillin. On day 5 he woke up singing (this is my chronically irritable, aggressive, rude, ODD child). He gave everyone hugs and kisses (??!), and went to play outside where he thinks the dreaded bugs are going to get him. He found a big toad and got peed on. This should have been a trigger for a major raging meltdown. Instead he changed his shirt, washed his hands, and went back outside. I couldn't believe it. 24 hours after the penicillin ran out we were right back to square one. So I requested another 10 days of penicillin and saw the same thing to a lesser degree. Day 4 and he woke up singing again. Unfortunately I came down with a fever and saw him regress while still on the penicillin. Doctor 1 has no idea what to do with us and wants to refer us elsewhere. Doctor 2 is not willing to give any more antibiotics and will not consider a steroid test. I emailed Dr. K who said we have enough evidence to strongly consider a PANDAS diagnosis, but we should pursue treatment here in Canada. Where??! Nobody here knows what to do, if they have heard about PANDAS at all. BTW - we also swabbed the whole family and did ASO titers. All back normal, even though dh is on antibiotics for a current sinus/throat infection. Ds5 and I have sinus pain and ds7 & ds3 are complaining of sore throats. It seems we are always sick, but nothing ever comes back abnormal except for that one ASO at 512. So we're waiting on results from Dr. Cunningham. I asked for a referral to an immunologist, but our doctor wants to send ds to a pediatric rheumatologist. That's probably a year wait to get in. I have spent the last 4 years on one waiting list or another and I'm at a total loss as to what to do next. Any suggestions?

Sweet Cheeks Mom - I sent you a PM. Boy is it hard to get antibiotics in Ontario. I brought my 3-year old in last year when he had pink eye and the doctor said they are no longer treating eye infections with antibiotics. I argued and she said that unless his eye won't open or is bleeding (YES, she said bleeding), then they won't do antibiotics. What? Meanwhile my other kids got pink eye too. Then we went in with scarlet fever. They said it was viral and only did a strep test at my insistence. So a full week of untreated scarlet fever waiting for tests to come back, and once again the other kids got it before the tests came back to confirm it was in fact scarlet fever. Yesterday I went in. I've had a sore throat for a week, then it moved into my sinuses. I have an upset stomach and a high fever. I had to argue just to get a throat culture. Apparently that's only a 2 on the strep scale so they normally don't swab unless you have more points towards strep. Then the doc told me there is much talk going on in the medical community about not treating confirmed strep with antibiotics anyway. He said it only makes the infection go away a little quicker, and doesn't do much else. They are more concerned about creating antibiotic resistant strep than they are about rare complications. I'm starting to think those "rare complications" aren't so rare at all. Oh, and about pharma companies...ya, our 10 days of penicillin cost $3 and change. Not much money to make there. I'm feeling rather cynical this morning.

Thank you!

Is Dr. Cunningham's lab the only one that tests for CaM kinase II? Any other labs doing this test? How do I get this test for my son?

We suspect PANDAS for our ds (6). He has had severe leg pains over the last 3 years along with OCD and behaviour symptoms. Sometimes the pain is in his knee, sometimes his ankle, sometimes muscular. It mostly happens at night and is so severe he wakes up screaming and continues to scream for hours no matter what we do (hot bath, heat pad, massage, ibuprofen). Occassionally it happens during the day and he refuses to walk. On rare occassions it is his arms, or "hurts everywhere", but mostly one leg (not always the same one) and mostly at night. These "pain attacks" happen just before or during mood/OCD episodes. We just learned of PANDAS and got back a high ASO titer. Not sure what all of this means yet.

Thank you! I sent a PM.

Hi momcap, Sorry to say, that I personally don´t know of a PANDAS-educated doctor in Canada, but you might show your doctor this article : Evidence-Based Guidelines on the Use of Intravenous Immune Globulin for Hematologic and Neurologic Conditions Paula Robinson, David Anderson, Melissa Brouwers, Thomas E. Feasby, and Heather Hume, on behalf of the IVIG Hematology and Neurology Expert Panels A 2007 Published by Elsevier Inc. (http://www.bloodmed.com/contentimage/guidelines/2854.pdf) "In Canada, intravenous immunoglobulin (IVIG) use has increased by 115% over the past 7 to 8 years. Given this increased usage, Canadian Blood Services and the National Advisory Committee on Blood and Blood Products for Canada identified the need to develop and disseminate evidencebased guidelines to facilitate appropriate IVIG use. As a result, guidelines for IVIG use in hematologic and neurologic conditions have been developed and are published in this supplement of Transfusion Medicine Reviews. This commentary provides a brief description of the process used to develop these guidelines and includes a summary of the recommendations for IVIG use in the various conditions evaluated. ... IVIG is recommended as an option for treatment of patients with PANDAS." All the best wishes, PANDAS_Denmark Thank you. The link did not work but I was able to find the article from the information you gave. I appreciate the help!

Has anyone found a PANDAS-educated doctor in Canada? Our doctor has heard of PANDAS and is sympathetic, even willing to read any info I can gather. In the meantime he is only willing to give a regular 10 day course of penicillin following a positive throat culture or high ASO titer. Clearly we need more than that!

Can you link the article here, or PM me too? I would really like to have something to share with our school as well.

Hi, I'm new to the forum and have been reading posts for a couple of days. I suspect my 6 y/o ds has PANDAS and I'm wondering about Lyme. I'm feeling overwhelmed and I'm looking for advice on what to do next. We moved to a farm when C turned 3 (and also had baby #3 three weeks before moving), and shortly after the move he went completely berzerk (rage, banging head on wall, biting self, hurting others, breaking windows, shrieking for hours, etc). He was always a difficult child but this was something new and scary! Here we are 3.5 years later and he's had almost every label you can imagine: ADHD, ODD, OCD, SPD, separation anxiety, social anxiety, selective mutism, GAD, mood disorder-NOS. We have not been able to rule out or diagnose AS despite seeing a leading specialist. We are treating for juvenile bipolar which fits better than any other label in the alphabet soup. We also have questions of Tourette's because he has vocal tics occassionally at school, although we've never seen them at home. All of this behaviour is episodic, and he has good periods of time, usually in the summer when everything goes away - even the sensory processing disorder. I noticed almost 2 years ago that he's often sick before having an episode. I've shared my concerns with countless doctors and other professionals, done every test we could think of, and everything comes back normal. I KNOW something physical is going on with him, and the physical symptoms keep increasing. He used to be extremely athletic. Now he hardly even runs. He gets random pains that are very severe. He had a spacing-out incident at school that may have been an absense seizure. Now he says it hurts to breathe if he runs and doesn't want to go outside at all. And the latest is that he's complaining of chest/heart pain. C is in the middle of a behaviour episode right now, which usually does not happen in the summer. I heard about PANDAS a few weeks ago and rushed him in for an ASO titer. It came back at 512. Our doctor has heard of PANDAS and put him on penicillin. We're on day 7 of a 10 day course and only seeing some minor improvement, which I'm afraid I might be imagining. WHAT NEXT?! I wish someone could give me a checklist - "do A, B, then C and it will all be okay". Oh, and I'm in Canada which probably complicates things a fair bit. Please help! Mom to C (6), A (5), & P(3).