momcap

Cassi, Do whatever you have to do to keep your child safe! As we are discovering, there is no quick fix for PANDAS. So my advice is to accept whatever help you need to get through this immediate crisis. We had our ds(7) on risperidone for several months. I hated every minute of it. But we did what we had to do to. We are also waiting on cunningham results and just beginning to understand what is going on inside our little boy's body and mind. He is a completely different kid when he takes penicillin (I mean total personality transplant from ADHD, ODD, mood disorder, GAD, etc to happy and relaxed). I agree that if you can keep your dd safe while trying antibiotics that will go a long ways to diagnosing or ruling out PANDAS. Have you listened to Dr. T's radio interview? He says that at the root level of PANDAS/PITAND there is an infection (identified or unidentified) that responds to antibiotics. The next level is the immune system and autoimmune response. Steroids, IVIG, and PEX all address this level. And at the third level there is a resulting neurochemical imbalance. In a time of crisis this third level may require psychopharmacological agents. I hope I got that right, but here's the link so you can listen to it yourself: http://www.voiceamerica.com/voiceamerica/vepisode.aspx?aid=44551 My heart goes out to you. My ds was suicidal at the age of 5.

Thank you so much Steph for starting this thread. Boy did this ever touch home. I feel like I could have written your original post and I was so eager to read all the responses. My DS(7) has regular meltdowns and tantrums. He has many Asperger-like symptoms, but they are inconsistent. When he was 3 & 4 he had serious daily rages and I was terrified. The rages don't happen very often now. The last one was in January (we hadn't heard of PANDAS then, but he was treated for strep throat a week after that rage). By the end of that rage I had a gouged kitchen table, a broken window, a busted lip, and bruises all over my body from attempting to restrain him (all over doing homework). While all this was happening my 2 younger children were running around, turning lights on and off, and screaming. I was completely unaware of them, focusing everything I had into getting DS(7) and myself through the moment in once piece. I only know what they were doing because I had the presence of mind to flip on my video camera and toss it on the counter. I can hardly stand to watch that tape. They were terrified. I was so shaken up and realized how poorly equiped I am to handle a true, completely out-of-control rage. I live in dread of another rage ever happening, but I also plan on it occurring some day. We are 4 years into the mental health system - boy I wish we had heard about PANDAS sooner. One good thing about those 4 years, is that we have a mental health worker who is familiar with our situation. We also have access to a mental health crisis line which alerts our mental health worker to meet us at the hospital. If a serious rage ever happens again I will call the crisis line and then 911. I also realized I needed more support, not just for myself, but for the safety of our whole family. I opened up to 2 neighbours and was completely shocked to find out they are sympathetic and willing to help with my younger children on short notice. I have taken each of them up on it in the past 2 weeks during DS(7)'s screaming fits (which I don't consider rage, but still very difficult and disturbing). Yes, he has strep throat again. I also made the school well-aware that this could happen at school and even showed them some of the video. We worked together to make a plan for the school in case a rage happens there. I took all these steps in shock and disbelief, feeling strangely detached and wondering if I was crazy (post traumatic stress?) Back in January I had no plan, no clue, no help, and was very alone. I couldn't even imagine someone else finding out how horrible things could get. Now I am no less terrified of the thought of a rage, but I think I am as prepared as I can be. Peglem - thank you for posting that website! Mama2alex - a HUGE thank you for helping me see through my younger children's eyes.

Thanks for all the answers. According to Wikipedia: Hyperkinesis - overactive restlessness, ADHD-like Akinesia - inability to initiate movement Akathisia - inner restlessness, inability to sit still or remain motionless. Also interestingly associated with pacing and pain in knees.

Thank you

Is there a medical term for not being able to hold still? Would this be considered in any way part of chorea? I am watching ds to see if I am missing any signs. He does not have any obviously unusual movements unless he's REALLY in exacerbation and ready to lose it. Then he paces, arm flaps, jumps, spins for 20 mins plus, etc. But on a daily basis, or in mild exacerbation (where we seem to be stuck most of the time) he doesn't do anything obvious. He is just in constant motion. This is a big problem at school. The behavioural developmental pedi asked ds to hold his hands, close his eyes, and hold very still. Ds could NOT do this. I think the doctor called it something, but I don't remember. We never got a report from that appointment because the doctor accidentally erased the tape with all his notes to be dictated. Has anyone heard a medical term for this? Thanks.

I convinced the E.R. doc to give us a script for Zithro. Only 5 days, but I'll take it. Now to figure out how to get it into a puking child, who is now 104 degrees. And I FINALLY made the jump and contacted a PANDAS doc - Dr. T. Had a good chat today about next steps, and we're doing an official phone consult in a few weeks. I'm applying for passports tonight. I should have done this in the first place! Thanks to those of you who PM'd me!!! You guys must have been praying hard because we had a miracle today. While we were at the E.R. one of the docs agreed to take on our family as patients!!!! No more driving 2 hours each way to see a GP, who doesn't even want to prescribe antibiotics. Yay! I don't know if this new doc will be PANDAS-friendly, but we have nothing to lose. Thanks everyone for your comments, prayers, and concern. Hoping for better days ahead!

I jinxed it. He woke up this morning clutching and pintching at his side, screaming in pain. Then told me he didn't feel real and everything was different. He's seeing "pictures flashing in [his] brain." He's on day 7 of amoxicillin and he's 102 degrees, his throat hurts, and his stomach hurts. What on earth happened? What is going on inside his body? Headed to the E.R. shortly...

I think we are quickly exhausting all options except to head into the U.S. to a PANDAS specialist. How many of you have posted that you should have just run to a PANDAS doc in the first place? I can't fill U.S. prescriptions without a Canadian doctor co-signing. I really really hope that either our pediatrician or GP will be willing to do this. So far no luck with either one on requesting longer term, heavier hitting abx, but maybe they will listen to a well-respected doctor rather than a panicking Mom. Just need those cunninghams back first, so I know I'm not way off base. Thanks again for the support!

Ds(7) cultured positive for strep last week. He started a 10 day course of amoxicillin Tuesday night. By Thursday I could see a difference in his face. His expression was calmer and happier. He was starting to relax. Last night he informed me that the medicine is really making him feel better because he doesn't feel like making a big fuss about anything. And he didn't make a big fuss over anything at all. Normally my day consists of surviving from one "big fuss" to the next, trying my best to stay one step ahead of him, predicting what might cause a meltdown and trying to avoid it. In the last 2 days he has been enjoying some of the things he used to like. He is loving music! Before he would scream at me to turn it off, now he is singing, dancing, and drumming along. This summer he refused to go outside. Yesterday we walked for 2 hours in the bush and I listened to him enjoying everything with the wonder of seeing something new. "Mom this is the most beautiful place. I can really understand nature and God's creation when I'm here." Today he said, "Mom, I know this medicine is for my strep throat, but I think it's doing more than killing the strep. I feel better and I'm making good choices." (We talk about choices a lot in our house.) The most obvious difference is his severe tactile avoidance has simply disappeared overnight. He put a dress shirt on for church this morning, stating that he looks handsome in nice clothes. ???!!!! This is a child who would rather have a full-out war than put on a dress shirt. Last week he was determined to wear his worn-out shark pjs to church because they were the only thing that didn't bother him, and we ended up missing church altogether after having a 30 min clothes battle and realizing we started too late. He sleeps through the night on abx. The daily pain complaints disappear. We saw the same dramatic change in August on penicillin, and again in September on penicillin. I know when the antibiotics end he is going straight back to the "alphabet soup" (ADHD, ODD, GAD, SM, MD-NOS, etc). The doctor won't prescribe anything more unless he has an active infection. How can I stand by and allow this to happen to my child??! What more can I do to keep him away from this monster of PANDAS? How do I convince the doctor to believe me and do something? I want to scream!!!!!! Somehow it almost hurts more, seeing that my little boy is still in there. Sorry - just needed to get that all out. I can see that I am going in circles, getting nowhere and will inevitably end up bringing ds to one of the doctors mentioned on this forum. Thank you all for your support!

Bronxmom2, Thank you for helping me see the positive, even in the midst of this scary ordeal. I have learned time and time again that I need to stop and really listen to ds more. There are things he is trying to say, and I'm always so busy trying to "fix him" that I don't usually hear him. When I do stop and listen I always gain insight into his way of thinking. He is an extraordinary child and sometimes I need to just stop and celebrate that fact. I had an out of body experience as a very young child. I can remember flying around the room and seeing myself curled up on the floor. I remember being a little scared, but mostly it was fun and I wanted everyone to see what I could do. I remember the colour and texture of the carpet, the pattern on the furniture, the smell of the room. I described it all in vivid detail to my mom one day and she freaked out. I perfectly described the house that we moved from when I was 2. She said that I had a really high fever one time and had to be rushed to the hospital. It must have been then. It only happened that one time, but the memory is forever engraved in my mind. Emerson - keep writing! I journalled when I was a young teen, probably PANDAS. I remember thinking it was really important to make a record of what I was thinking and experiencing. I think it was my way of crying out for help. In my mid 20s I found those diaries. My symptoms were long gone and I was embarassed when I read those things. So I burned the diaries. I will forever regret that decision. Keep writing, keep sharing.

Wow, I'm so glad you found help for him. I hope he continues to heal. Before finding this forum I had NO IDEA that these things could happen.

I've begged both our family doc and GP for longer term antibiotics, to no avail. That's a hard sell around here. But I won't stop trying.

Is he doing any better now?

Wow, thank you everyone for sharing. This stuff is really hard, and I almost cried reading your replies. You are all such amazing parents, and I can't believe how many of us are going through all this. I've never read about disassociation (thank you SarahJane!) as a PANDAS symptom and I was worried this was pointing away from PANDAS. If he doesn't have PANDAS then my next best guess is bipolar. HE's already diagnosed with mood disorder-NOS and goes to a juvenile bipolar clinic for assessment later this month. I really want it to be PANDAS rather than bipolar - am I crazy? Bipolar doesn't explain the joint pains, stomach aches, etc. PANDAS explains everything. Norcalmom - thanks for Pascal's Wager. That was pretty much my theory on things until I got older and my faith deepened. My son also has times when he becomes obsessed with death. The first time was just before he turned 3, leading into what I believe was his first exacerbation. He started asking what happens after we die. He was 2!!! I couldn't believe it. Nobody we knew had died, not even a pet. So I answered as best as I could wondering how much he could possibly understand. He looked at me like I was trying to pull a trick on him. Then he actually started polling people everywhere we went to see what they believed. For 3 months my 2 year old child would go up to neighbours, friends, and even friendly old ladies in the grocery store and ask if they believed in Jesus. Then one day after he turned 3 he simply announced that he agreed and I never heard about it again until this past spring. This spring (he was 6) he was on and on about God and death, and what if we're wrong, and nothing feels real, and he doesn't even know if he is real. Around the same time we think he had an absence seizure - stood staring at the sky at recess and didn't come in when the bell rang. Then he announced that he could hear crying sounds and he didn't think they were real. This is just so scary! We don't have our cunningham results yet, but they only received his blood sample last Thursday. I'm anxious to say the least! Yes, I have seen an increase in symptoms. He was getting really irritable, angry, mouthy, aggressive, defiant, etc. Then Mon - Thurs he was crazy hyper. He was talking repetitively. On Thursday morning we were waiting for the bus and I said, "Car!" to alert the boys that a car was coming down our quiet street. For the next 5 mins until the bus came the only word he said was "car" over and over and over. He even started singing "car car car" to various tunes. Drove me nuts! He was getting pretty ramped up, and I was expecting the spinning, pacing, and raging to start next. But we got amoxicillin on Wednesday and by Thursday afternoon he came home from school calm and "normal". Then this morning I overheard him say to his brother, "Do you feel like you're dreaming?" Ds(5)-"No", DS(7)-"I do.", DS(5)-"Why?", DS(7)-"I don't know. I just do." That really shook me up. Thanks again everyone for your replies. I don't know if it makes me feel better, or just really sad for all of our kids, but at least I don't feel alone.

Does anyone else's PANDAS kid have this symptom? This morning Ds(7) is talking about not feeling real, and feeling like he's dreaming. In the spring he was talking about God not being real, and the world not being real, and it's all just a dream. Scary talk. I thought it was a side effect of the high dose vitamins we had him on, so I took him off at that time. Now he's saying this again. He cultured positive for strep last week and is on amoxicillin. Could it be from the strep? From the meds? I read about this as a symptom of lyme (or maybe it was babesiosis?). Any thoughts or similar experiences?

Can I get that list of tests? I need to request a full immune work-up, but if I don't ask for specific tests I don't think I'll get anything useful (as has been my experience so far). Thanks!

Sounds like a scene from Glee. Maybe we can get them to do a PANDAS episode. LOL!

Kimballot, what are C3d levels? I have a lot to learn about the immune system. When we see the pediatrician in October I want to ask for a full immune work up. I think I need to ask for very specific tests or I won't get anything useful. Do you have any suggestions? I asked for a referral to an immunologist, but got referred to a juvenile rheumatologist instead. Should I go back and demand an immunologist? I'm also worried about Lyme from all those walks in the bush. I was told by our naturopath that lyme tests in Ontario always come back negative and lyme tests in California always come back positive, so there is no useful testing available. I don't know what to make of that comment. I was thinking about IGENEX, but after the naturopath's comment, and then reading Dr. T's comments on it I just don't know if I want to spend the money on something that could possibly give a false positive and won't be taken seriously by doctors.

Hmmm. Might be time to find a new doc! This article might help your case http://www.jfponline.com/pdf%2F5710%2F5710JFP_ClinicalInq1.pdf ...but part of me is inclined to say, if you need to fight your doc on this simple topic, you aren't going to get far with her when things get more complicated! Thank you for the article! I've been googling strep carrier treatment and haven't found anything very useful yet. I agree that I need a different doctor, but I'm stuck between a rock and a hard place. We are driving almost 2 hours each way to see our family doctor in a city we haven't lived in for almost 15 years. We have been unable to get a doctor in each of the 3 cities we have lived in since then because our whole country (Canada) is facing a major shortage of doctors. In our current town everybody uses the Emergency Room like a clinic because hardly anyone has a doctor at all. We are anticipating going to one of the PANDAS doctors in the U.S. that have been mentioned on this forum. I am trying to gather as much information as possible first, particularly trying to rule out anything that might result in failure of treatment. So far we've run ASOs and swabs on the whole family, and sent blood for Cunninghams. Any other suggestions?

And should a carrier have high strep titers or low? I don't think that one is known either. Of my 2 boys that doc calls carriers the PANDAS one has high ASO - 512, and the hopefully non-PANDAS one was normal. Who knows. Someone needs to do a study!

Thanks for all the replies! I read on another topic to re-test after 3 weeks. Our doctor wants to see just the PANDAS son 1 week after. I can't seem to make her understand our predicament. So I'm going to book appts for both boys in 3 weeks anyway. I also suspect that amoxicillin is "lame" and it won't clear the strep. But the doctor didn't want to treat with anything, saying that carriers are not treated. I had to beg for anything. I think we've been dealing with this same strep for several years and we've been on amoxicillin so many times, but it never clears anything. We've also been on zithromax repeatedly, so I would guess this is a resistant strain. My doctor was not open to my suggestion of augmentin or clindamycin. DS(7) was not on any antibiotic when he was swabbed. He finished 2 rounds of 10 days each of penicillin about 3 weeks prior. I can't convince either doctor to consider longer term abx, despite a remarkable decrease in symptoms while on the penicillin, and a dramatic return of symptoms when it ended. DS(5) has only had one other throat swab - almost 2 years ago and it was positive, but he was symptomatic then. I don't know for sure if he is a carrier, but the doctor is saying both boys are carriers since they are asymptomatic now. I don't know what to make of this mess. Are they really asymptomatic, or are their symptoms just different than most? This morning PANDAS Ds(7) feels like he is dreaming and he is not real, he's been aggressive, defiant, crazy-hyper, and making noises non-stop. Ds(5) is dizzy, and DS(3) spiked a high fever last night. Here we go again!

We have this problem too. DS(7) wants to fit in with the other kids, but gets pains when he runs. The PE teacher keeps telling him that he just needs to run more and he's getting runner's cramps. I agreed with her that more exercise would help build endurance, but I think there is more to it for him. He used to be very athletic, now he just wants to sit on the couch. When he was 2 & 3 we would walk in the bush for hours. We walked, he ran circles around us and never once wanted to be carried. Our friends often commented on his limitless energy. When he started soccer he was asked to play in a league with kids 2-3 years older than him because he was too competitive and had the ball the entire game. Now he goes to soccer and asks to play goalie so he won't have to run. But they don't want him in goal because he thinks the ball has germs so he won't touch it. He looks ill and doesn't want to go at all. He can't run at recess without getting chest pains, leg cramps or a stomach ache. He desperately wants to play boot hockey, or soccer at recess because this is the only time he fits in socially. Now he can't even do that. The other night he sobbed on my shoulder because the other kids can run and it's not fair.

After telling me there is no treatment for carriers our doctor finally agreed to give us amoxicillin, which I believe is augmentin. Here's hoping it works! We found out yesterday that ds(5) was positive for strep culture with no symptoms, then today that PANDAS ds(7) also came back positive. He is having some symptoms though. He's really tired and has a tummy ache. No sore throat or fever. Does that make him a carrier too, or is he just fighting the strep in a different way than most? I'm worried the amox won't clear it. My kids have been sick more than they've been well for almost 4 years. We've all been on standard doses of amoxicillin & zithromax more times than I care to admit. I asked today about getting their tonsils out but the doctor did not sound very supportive. I don't know what else to do! I know about changing toothbrushes, but it never occurred to me to give them separate toothpaste. That seems so obvious now that you pointed it out to me. Thank you!

Oh wow, can I ever relate. We've gone to doctor after doctor for 4 years. Our pedi who actually believes my son has PANDAS is unwilling to treat him further and is no longer returning my calls. (I think because I suggested he conference with a PANDAS expert about protocol.) Our GP ran swabs on the whole family last week, found 2 carriers, and says there is no treatment for carriers. I want to scream! 2 of my kids have strep in their throats and 1 is going crazy, so lets do nothing?!! Don't give up! My son's symptoms are mostly behavioural/emotional, and I've been told so many horrible things by doctors who didn't believe me. I've been told to take parenting classes, to bake apple pie and make my home a happier place to be, and to learn how to discipline better. DS(7) is diagnosed with a mood disorder, ADHD, ODD, GAD, SM, separation anxiety, OCD, and the list goes on. He makes repetitive disruptive sounds all day at school and they are treating it as a behavioural issue rather than vocal tics. I've been beaten down so many times that right now I just don't want to get back up. But I will, and so will you! We have to keep going and we will find the courage to do so. You are NOT alone!

I'm sorry I don't know the answer to your question, but I have a question for you if you don't mind. What did you do to eliminate the carrier status in your dd? We just found out today that our ds(5) is our carrier. I'm still worrying about how to eliminate the carrier status, and it never even crossed my mind that future outbreaks could also be asymptomatic. Yikes! I'm looking forward to seeing the responses to your question. Thanks!