VickyLH

I would be interested in finding out if the electrical box has an effect as well since my son's room is also directly above the main power supply box. My hunch would be that it does have an effect since power would be constantly flowing through it powering everything in the house that is continuously left on. We're bad for constantly leaving computers running with wireless always activated. I think I'll look into buying a meter. Very interesting thread. This is something I've never really considered before. -Vicky

Just curious, I understand that there are children who require more than one or two IVIGs. Do you think being enrolled in this study would limit the treatment options for children who don't respond well to IVIG or who may need more in the future? It seems children also respond differently to various Abx's, so I also wonder if that would potentially limit the treatment. I suppose this is a question I need to ask them directly. I e-mailed them yesterday and am eagerly waiting to find out if my son will be considered. We're just so new to all of this and I have no idea about how my son will respond to various treatments. Thanks Vicky

Thanks for posting the link Vickie! It looks like we may qualify. I sent them an e-mail with some questions. I am happy and scared at the same time. I was hoping for a dramatic recovery on antibiotics, but so far we haven't seen it, at least nothing significant. We are only on day 5 of Azithromycin (already tried Amoxicillin and Augmentin), so I guess there's still time for improvement, however I'm concerned his dose it too low (150 mg/day). The thought of IVIG scares me, but this may be the path we have to take. Thanks again, Vicky in NC

Good afternoon everyone, I've been a little puzzled by my son's response to abx. First a little history, he was diagnosed with a skin strep infection last June and soon after we saw a steady progression of PANDAS symptoms. His symptoms worsened considerably in December just prior to a confirmed strep throat infection during Christmas (everyone in the house had it too). He was initially prescribed Amoxicillin and had a somewhat positive reaction (more calm, stopped twirling/pulling his hair) to it after about 3 doses, however it only lasted for about 12 hours and then his symptoms worsened a little (vocal tics, saddness in addition to OCD). After a few days we switched to Augmentin and the following day he woke up feeling and acting completely like his old self again. However, once again this only lasted about 10 hours and that evening his pupils were dilated and he was extremely anxious and sad. We completed the Rx (even increased the dose a little at the end of it) and we didn't see a huge amount of improvement over the 10 days. At times he would be fine and then some time later he would have another episode that would seem to hang around for a few hours. So, this got me thinking, perhaps his skin strep infection was never fully irradicated and it went intracellular. Perhaps what we were seeing is the Amoxicillan and Augmentin quickly killing off the extracellular strep and hence providing some temporary relief, however he was continually being reinfected from cell die off and the release of intracellular strep. Does this make sense? Perhaps this is an obvious conclusion or perhaps I'm way off base with my thinking, but I'm just trying to somehow make sense of what we're seeing. Today we had our first doctor's appointment with an Immunologist and we received a 30 day Rx for Azithromycin. I'm really curious if we'll see a different response since it is more effective at killing off intracellular strep... only time will tell I guess. I'll keep you posted. Has anyone else seen a similar response in their child that was resolved with Azith? -Vicky

I had glanced at this study a few weeks back and the only thing that made me feel apprehensive about enrolling was the fact that it appears to be a blind placebo study. Scientifically speaking, I totally understand the need for this, but I'd hate to think my son would go through invasive procedures that would likely not benefit him. Does anyone else know the details of this study? Am I correct in thinking that the control group will receive a placebo IVIG? I'm going to try to find out more information from the NIMH website because I'm pretty certain my son would qualify for the study since we haven't started any for of treatment other than a standard course of antibiotics for his recent Strep infection. Hmmm, I can't seem to find the study description I thought I looked at prior to Christmas. Does anyone know the link? Perhaps I'm confusing it with another study.... I'm certainly suffering from information overload at this point. Thanks Vicky

We're fairly certain DS11 has PANDAS and we're finally seeing an Immunologist next Monday (he has ALL the major symptoms, severe anxiety, OCD, tics, sudden onset of bed wetting, difficulty with bedtime, etc). Our entire family (myself, husband and all 3 boys) were recently diagnosed with strep throat and now I'm beginning to wonder if my second oldest son is/was showing signs of PANDAS (although they are different from my oldest). Our troubles started in November/December with both kids. My oldest had severe difficulties with the above mentioned symptoms and at the time the difficulties my second son were exhibiting were somewhat overlooked, but in retrospect I'm wondering if they too were signs of PANDAS. Starting last November DS9 started having rage issues which were very out of character. He would be set off at the littlest thing and started having a difficult time interacting with his friends (or anyone for that matter). When I spoke with him after a rage episode he told me that he felt like something that had just burst uncontrollably into flames when he raged. He said that in the moment of the rage, he didn't think about anyone or anything other than his extreme anger. To settle down, he would have to sit alone in his room for up to an hour or more. Around this same time he began biting his nails, sucking on his shirts and at times was literally bouncing off the walls and just couldn't settle down. The strange thing is that once he started abx for his confirmed Strep infection, he turned back into his old self. However, today is the first full day he has been off abx (had last dose yesterday at noon) and his anger issues and his excitability seem to be rearing their heads again. Do you think I should be taking him to the doctor too or is this perhaps a coincidence? He isn't showing signs of OCD and the shirt sucking has stopped - although I did notice yesterday he was biting his nails again. Should I wait a couple of weeks to see what transpires? I feel so incredibly paranoid these days and that our family is under attack! I'm hoping others will chime in to share whether any of their PANDAS kids presented in a similar way or not. One more thing, I've also noticed others mention carb/sugar cravings. This son in particular craved a ton of sugar and carbs November/December, however I figured it was mainly because we had a new batch of Halloween candy in stock. Strangely enough, since starting abx, he hasn't asked for candy at all and he even chose to eat some veggies for a change! I'm not sure if that means anything, just putting it out there. Thanks again for all of your help and support as we begin our PANDAS battle - and I'm hoping it's not x2!! -Vicky ugh - sorry - I hate typos but couldn't fix the typo in the "title" - I do know how to spell concerned

Thanks, after speaking with my husband, I am now thinking that he may have seperation anxiety from me (I work Mondays and Fridays) and he may want me to give it to him. I guess I'll see tonight. I know he feels "safer" with me than my husband. I don't mean that my husband would harm him in any way and he tries to be very understanding, but he's probably a little less patient through all of this than I am. Boy this is tough, it seems you don't know what will come next with PANDAS. That's what's so scarey and has my nerves frazzled.

He's already on the liquid. He wouldn't say why he didn't want it but it's obvious he's pretty upset. I'm at work today and tried to convince him to take it while talking to him on the phone, but I didn't have any luck.

Hi everyone, It seems things are turning bad fast with our son. He is on 250 mg Augmentin 3 times a day for a Strep infection. He's been taking Augmentin since Tuesday (and was on Amoxicillin for 5 days prior to that). Had a great inital reaction the first day, but has been going down hill fast since (vocal tics, many movement tics, OCD, anxiety, etc). He is now refusing to take his medicine and won't tell us why. Any suggestions? I'm afraid to hide it in his food for fear that he will stop eating and/or drinking. He seems very distraught over this (as am I and his father).

Hi again everyone, my suspected PANDAS son (positive for Strep throat) started on Amoxicillin for a few days and then was switched to Augmentin (250 mg x3 per day) 2 days ago. His initial response to the Amoxicillin was somewhat positive the first day but then he took steps back and we began to see new tics appear and he had extreme sadness in the evenings. We switched to Augementin and the next day (yesterday) he was back to his old self for most of the day (it was so nice to have him back for a while!). However last night he took a turn for the worse again and started having anxiety, repetitive behaviors and his pupils were dilated. Today he's extremely twitchy, won't sit still, has vocal tics, throat clearing tic, is repeatedly touching things, retracing his steps, etc. I've noticed a couple of other parents mention a zig zag recovery while on Abx. Is this normal? Do others also find the tics/OCD tendencies shift from one form to another during treatment/recovery. I was so hopeful yesterday, but today I feel defeated once again. I'm not sure if we should just sit tight and see what happens, or if this is a sign we need to adjust something... possibly a stronger dose of Augmentin (he's 11 and 72 lbs). I'm sorry for the million questions lately. It's tough trying to figure this out on our own without the guidance of a doctor who actually believes in PANDAS. Does anyone have the e-mail address of Dr. Corbier in Concord NC that you could PM me? We don't see him until April (although we're on the cancellation list so hopefully it will be sooner) but I want to contact him to see if he can provide us/our Doctor some guidance prior to our appointment. We have an appointment with an Pediatric Immunologist next Monday (Dr. O'Connor in Concord NC) who was recommended by someone on this forum, but I'm not sure how much she can help us with Abx or exactly how much experience she has with PANDAS. Thanks, Vicky

is everyone in your family on Augmentin? Or are some of them on Amoxicillin? -- Only my suspected PANDAS son is on Augmentin. DS4 is on Amoxicillin (pretty high dose) and DS9 is on Penicillin. I am taking Azithromycin tablets and I can't remember what my husband is taking. Thanks for the reminder about the toothbrushes and toothpaste. So much for the new toothbrushes Santa brought!

Thanks to everyone for your recommendations about switching Abx. Although we saw some initial improvement on Amoxicillan, those improvements weren't enough to make a huge difference for him. We started seeing some foot brushing and head tics reappear on Sunday and his OCD seemed to be back full force on Monday. He was also extremely sad and cried himself to sleep last Friday, Saturday and Sunday night. On Monday we discovered that all 5 of us in the family had strep and we also asked our doctor to switch Abx for ds11 to Augmentin. I know it's a little early and we may not see sustained improvements, but today (after only 3 doses of Augmentin) my son seems like a different child. He said on a scale of 1 to 10 his OCD is a 2, whereas last week it was 10! He had no trouble getting dressed this morning, brushing his teeth or getting his shoes and coat on to go to the doctors! He's also been more attentive today homeschooling. I still see a few small motor tics, but they are things most people wouldn't even notice. Even though we don't have an official PANDAS diagnosis yet, I truly believe we are finally on the right track with helping our son. We went to see our family doctor today and I don't think she was as convinced as I am about the Abx helping his OCD. I asked if she would be willing to extend his Rx for 30 days, but she said she didn't like using Abx too long since they can be harmful. Basically she only wanted to talk about the current Strep infection and when I asked if she would consult with the Pediatric Neurologist the we will see in April she beat around the bush and then finally said "she'd try" - not sure what that means exactly - either you'll do it or not. Anyway, I don't think she's a believer in PANDAS just yet, but I'm certainly going to work on educating her. Has anyone had success getting rid of PANDAS symptoms with a conventional 10 day course of Abx? What is the reasoning behind a 30 day Rx? Is it just to make sure everything has cleared? I'd appreciate any input since I suspect I may have to make a good argument that the benefits of the extended Rx will outweigh the risks. Thanks again for your advice! I don't think we would be headed in the right direction if it wasn't for Forums like this and parents who were willing to help. -Vicky

Thank you all for your replies! I didn't realize how ineffective Amoxicillan is! Although my son currently has a Strep throat infection, he initially presented last June with skin GABHS. I think I'll request the blood tests you mentioned and I will also request at least 30 days of Azith or high dose Augmentin. It's so frustrating trying to be the caregiver, psychologist, researcher and doctor all rolled into one!! How can doctors be so unaware of such a devastating disorder. I pray that our determination and perseverance will at least help clear the path for future PANDAS families.

Hi everyone, Happy New Year! My ds11 hasn't been officially diagnosed with PANDAS (we have to wait until April for our referral appointment to Dr. Corbier in NC ), but we believe a confirmed Strep infection last June is the reason for his current PANDAS symptoms (anxiety, OCD, tics, bed wetting, dilated pupils, current poor handwriting/math skills (although gifted) etc). His symptoms were escalating just prior to Christmas. We took him in for a rapid Strep test and then a culture on December 22nd, but both came back negative. However, while visiting family in Canada over the Holidays he developed a sore throat and was diagnosed at an Urgent care clinic with Strep and was put on Amoxicillin (1 tspn 3x per day for 10 days). He's been on antibiotics for 2 days now and we've seen at least a 70% improvement in his symptoms. Last week he had been having severe anxiety each morning while getting dressed and often repeated putting his clothes on and off many times or he would just sit there unable to start getting dressed at all. This morning I handed him his clothes and he chatted with me and just got dressed like he used to - no problems at all!! We're enjoying this time that we have our son back, but or course I'm now afraid that his symptoms might get worse after he finishes this short course of antibiotics. My question is, should we have our family practice doctor run blood tests on him while on antibiotics and a couple of weeks after he finishes? Our doctor knows nothing about PANDAS so I doubt she would make any decisions based on these tests, however I am wondering if the results would prove to be useful for our future visit with Dr. Corbier. I'm also in the process of arranging an appointment with an immunologist as well, but we may have to wait 6 weeks for that appointment too. I hate waiting when we need the help now so if we can, I want to be proactive. I'd appreciate any advice that any of the more "seasoned" PANDAS parents could give based on your experiences. Sincerely, Vicky

Oh, sorry I just noticed the reply above contained the information. Thanks for sharing and best wishes!

That is such great news! Can I ask who you are seeing in NC? We're trying to get in to see Dr. Corbier in Charlotte, but we won't be able to see him until April 4th. We live in the Greensboro area. My son is having a very difficult time right now and the thought of waiting 3 months seems almost unbearable, so we'd love it if we could find another doctor if we could arrange an earlier appointment.

Hello, My name is Vicky and I have just recently joined this group to learn more about PANDAS. We strongly suspect our ds11 has PANDAS as a result of a confirmed Strep infection this past June. We managed to get a referral to Dr. Corbier, a Pediatric Neurologist in NC, however we can't see him until late March. In the meantime we took all 3ds's for a rapid Strep and all were negative. We're taking ds11 back tomorrow for a Strep culture. My question is, would it be helpful to see a Pediatric Immunologist while we're waiting for an appointment with Dr. Corbier? Our GP knows nothing about PANDAS and doesn't seem all that interested in helping out directly, but gladly gave us the referral we requested. Can anyone recommend a Pediatric Immunologist in North Carolina? We live in the Greensboro/Burlington area. Thanks so much for any help and guidance you can provide, Sincerely, Vicky

This is our third year home schooling. We pulled out ds11 (and ds9) when he finished grade 3 after trying both public and private schools. At the time we didn't understand what was going on with our son. He was extremely smart, but had times when he was socially awkward, had focus issues, tics, sensitivity to sounds, poor impulse control, etc. It was such a roller coaster ride. School accommodations only helped somewhat and we when we realized that the school setting was destroying his joy of learning, we decided to home school. I had always felt there was some sort of trigger to our son's issues, but I didn't know what it was. The first two years of home schooling were great, however this fall I saw a resurgence of some of the old behaviors we used to see - but this time even worse due to his more pronounced OCD issues. It was at this point that I learned about PANDAS related OCD and started putting the puzzle pieces together. His symptoms lead back to a skin Strep infection this past June. Although we're just starting to seek medical help and a diagnosis, I now believe very strongly that he's had PANDAS symptoms on and off since he was about 4. I also wonder if we had a great first two years of home schooling because he wasn't exposed to Strep as frequently. It's been a struggle this fall with his learning (mostly because I didn't understand what was going on), however now that I understand it will be relatively easy for us to make accommodations with his learning. I remember how much effort it took to try to be an advocate for my son at school. It was so frustrating I can't imagine how some of you handle dealing with school issues on top of your home being turned upside down and trying to be a medical advocate as well! Home schooling has been such a positive experience and in our area (NC) the home schooling community offers many opportunities outside the home such as home school band, coops, PE activities, etc. It's truly a workable option to consider if you are able to.

I love your suggestions! :-) We too try to use wackiness to distract from the situation. I love some of your ideas. My ds11 will be starting his CBT next Tuesday, however we have read the book "What to do When Your Brain Gets Stuck - A Children's Guide to OCD" so he's aware of some of the CBT techniques that he will learn to use. He has a difficult time using some of them in those extreme moments - especially when on his own. He also has difficulty at bedtime (and changing in the morning). I'll find him sitting on his bed, basically shut down and stressed out. He seems to snap out of it quicker when we turn his issues into a silly song or something. My only worry is that he won't be able to do it by himself and will depend on me to be his "distraction".

We're in Burlington. We're just in the process of making our appointment with Dr. Corbier and were initially told we'd have to wait until March for the new consult visit. We're still waiting for the official appointment though. We also have the option of seeing one of the other new doctors in the group at the end of January, but I'm really not sure what to do. My 11 year old son's OCD is really getting bad lately and I can't imagine him (or the rest of the family) going through this for 3 more months before we get help. He starts with his therapy next week, so hopefully that will help him too. Any suggestions? Should we hold out for Dr. Corbier or make an earlier appointment with one of the other Physicians in the same group practice. -Vicky