simplygina

Ok, now that you guys describe it in more detail, my son has his version of this as well. He actually look down and to the side though, then turns his head like he is looking over his shoulder. Interestingly his doctor noted the nystagmus in his chart last summer but then it was just that while checking his eyes we noticed that one eye would bounce a bit when he would look far to the left. Now I realize that the looking thing/tic, which didn't start until around Christmas, is also to the left.

From what I have read about tapering off SSRIs, Celexa and Lexapro are the most difficult because they have such a short half life. You may have to go very slowly and there will likely be some difficult days. We've been weaning my son of Zoloft since October and can't seem to get off the last 25 mg because the withdrawals have been pretty severe and I've been wanting him to be in a better place before we try to just deal with it and push through. I think I may end up cutting the 25 if half again. One way to tell if it is a withdrawal reaction vs. something else is to give her the regular dose again. If the symptoms go away within 24 hours, it withdrawal. You will need to wean in smaller increments and probably need to take it very slow. We've started by going down 1/4 of a dose every two months but he's been at 25mg since early December. If I had known getting off an SSRI would be this difficult, I really would have thought longer and harder about it.

I definitely like the idea of expanding the definition to include multiple triggers. Not sure if strep is what started it all for us, but I know it has definitely been a trigger. I suspect we are PANDAX now because colds and allergies now cause a downward spiral as well. Do we think that catching classic PANDAS early on would prevent a move to the PANDAX group over time? And I do think changing the age requirement is a good thing. Looking back over my son's medical history, he began to show aggressive tendencies and severe sensory issues at about 2 following a year where he had something like 8 ear infections. I think THAT is really when his issues started, but strep at age 5 is when the stuff hit the fan. By lowering the age, maybe we can catch things for some kids sooner. I hope by changing the criteria pediatricians would be aware to watch for psycho-nuerological changes in their patients that do have a lot of infections. A list of possible manifestations would be critical in my opinion. For me I didn't know if we'd just hit the terrible twos or what, but looking back, the sensory issues and change from being very good natured to very aggressive should have been a red flag. I'd hate to subject kids to a million tests when but when a kid is having soooo many ear infections and is unable to clear them, shouldn't we be wondering what is going on. Especially when the constant ear infections clear but then the constant strep starts. That is my biggest complaint with most doctors these days, they don't look for "why", they just treat the 7th ear infection and schedule tubes assuming "why" doesn't matter as long as we fix it. Then later treat the 7th strep infection and schedule the T & A assuming that will fix the strep problem. But I now realize the "why" can still affect them in other ways because it hasn't been addressed. And if that same kid is the one the mom starts bringing in saying, something is wrong, does he have ADHD? Something is wrong, i think he has OCD. Something is wrong, he gets so many stomachaches and headaches. Something is wrong I think he has Tourettes. Something is wrong, does he have a learning disorder because his schoolwork is deteriorating and his handwriting is awful. Shouldn't a doctor be able to connect the dots here? Why is this one kid having so many problems!!! Changing the criteria would help, but I guess the big question is how we get pediatricians on board with this. How do we find a way to get the word out so it is common knowledge, not something they think they read something about once but it is so rare it can't possibly be your kid.

My son talks more and is loud He gets fixated on more violent things He reads and rereads books, specifically Harry Potter He swears more Separation anxiety, specifically me leaving the house or being late to pick him up, is sure that I've died, so he calls me a lot Wants to sleep in my room, at least on the floor and if I say no he makes the dog sleep with him, or magically he can tolerate his brother and will let him sleep with him only to kick him out of his room first thing in the morning Hygiene suffers (bathing, teeth brushing, nail clipping, hair combing) Very argumentative, argues for the sake of arguing, even if you are agreeing with him Oppositional, especially with his dad Can't share Doesn't like to be around his brother or let his brother touch any of his stuff and extremely mean to him Can't handle garbage Has peed the bed on occasion Ask for reassurance over and over again (is that cat inside, is the cat inside, is the cat inside) Is convinced he is bad or may do bad things Apologizes profusely Repeats what either he or you have said Laughs a silly high pitched giggle after everything he says Has a phobia of some sort (once it was natural disasters, another was alien abduction, another was Sasquatch) Ignores you then acts irritated when you insist he look or listen to you Isn't affectionate Doesn't play well with others, would rather spend time alone reading in his room Talks baby talk sucks on the neck or sleeves of his shirts doesn't change his clothes loses the ability to give people their space, stands right on top of people or talks really close to them Talks endlessly, like a running stream of consciousness commentary reads out loud using finger handwriting and drawing look like a 6 year old Cries about EVERYTHING Won't do chores He also has OCD so it is hard to figure out sometimes what is age regression, anxiety, ocd or a tic. He's 10 so a lot of this stuff really is very age inappropriate. When he's doing well all of this goes away.

Well that would certainly explain why Zoloft made my son increasingly manic with each dose increase. He's down to 25 mg and the withdrawals have kept us there until he is further away from this exacerbation of PANDAS.

That is interesting thought. I wonder if I look back through his records if I will find other times we've used Omnicef and had issues. I know we've had rashes following amoxicillan.

I spent all last year asking about stomach aches. From what I figured out, lots of PANDAS kids seem to have migraine type things going on. We finally decided my son had abdominal migraines. Once he started taking magnesium supplements they decreased in frequency and severity. He will still get them (just not as severe) if he gets dehydrated, too hungry, or spends too much time in front of a movie or TV screen, especially if it is a fast action movie and he sits too close. If I catch it quick a dose of ibuprofen will do the trick. If not, I usually give him a dose of magnesium, ibuprofen and he takes an epsom salt bath with lavendar, rosemary and peppermint essential oils. Usually that will solve it and we can stop it from getting to the point where he throws up. He used to get them almost weekly, now it is more like one every other month. I had no idea this was linked to PANDAS either until I started reading past posts and soooo many people talk about it. I think the official name is Cyclical Vomiting and once I googled it I knew that I had found what he has.

I will thanks. He's been taking it for a couple of years now and I don't notice an effect but I'll keep watching to make sure I'm not just missing something.

Emotions all over the place would be an understatement. I don't think I'll ever do Omnicef again for him. He just couldn't handle anything and was going from rages to crying to hyper and silly and back again within hours. The 10 days on Omnicef will go down as one of our all time worst times thus far.

I'm so glad! I agree about Dr. T. He has been amazing.

I've been wondering if what i thought was the initial episode for my son in second grade when the ocd started really was the first. I remembered that he went through a really difficult time around Christmas the year he was in Kindergarten. He was so moody and convinced he was bad so Santa wasn't going to come. I remember sitting at my mom's house the day after Christmas wondering why my 5 year old was so angry and difficult. I also remembered that it wasn't too long after that his teacher recommended we have him evaluated for ADHD. I couldn't remember the dates or the time line exactly, and I couldn't remember if there was any strep involved. I've wondered if really THAT was the initial episode. I ordered all his records from his pediatrician when we were there last. I was going through all the documents and found that on 12/23/05 (his Kindergarten year) we went to see the doctor and he had strep in the throat and I'm guessing his eyes since he gave us a Rx for eye drops. The next record is 1/13/06. The doctor's notes indicate that he is very emotional, angry, crying a lot, agressive with his brother, struggling with school and acting impulsively. "He thinks he is bad". It also indicates he is extremely worried about natural disasters and not sleeping well. The doctor felt anxiety was more likely than ADHD and referred us to a psychiatrist. The next record is 1/26/06. Her notes say I indicate he is easily frustrated and lashing out when things don't go his way. Also that he "felt he didn't deserve Christmas presents" and wasn't sleeping. basically I had indicated that Christmas was "horrible" but that he was slowly starting to act better again. She also indicates he is very sensitive to noises, touch and commotion. She felt he had anxiety and that the anticipation of Christmas and the subsequent let down were why he was so hard at that time. A strep diagnosis and us visiting the doctor 3 weeks later for adhd and anxiety symptoms! I finally linked it to a strep episode!!!! Not that it will matter to anyone else but it confirms it for me! Now I need to get the records from the Instacare clinic by us that we've used to get most our rapid strep test and see if their records match up to any additional episodes I know of. i feel like a medical detective!

Biaxin is a macrolide. A cousin of azithromyacin. It will kill things like intracellular strep, lyme and mycoplasma that other abx can't get to. Probiotics are the good bacteria that is necessary for the GI tract to function correctly. Without them people suffer all sorts of issues like digestion problems, diarrhea, yeast overgrowth, leaky gut, etc. Antibiotics kill both the good and the bad bacteria, so when taking an antibiotic it is a good idea to take one to replenish. You can buy them at the grocery store. A good brand is Culturelle. The good ones with a lot of organisms aren't cheap, but it is worth getting a good one. You can't take them at the same time as the antibiotic because it will kill the good bacteria. I try to give them at least 3 hours apart.

I keep wondering if it means some things improve while others are getting worse! He definitely slept better on the Augmentin, but even that is beginning to improve as well. Your experience sounds somewhat like what we experienced on Omnicef. He'd be fine, then so angry, then laughing and silly, then crying because life was hard, then hugging me and loving me. It was crazy. It is the first time I was truly worried about his mental state. He was so up and down it was bizarre. I was extremely apprehensive about the Biaxin. Then I made the mistake of reading a website where people could post their comments and soooo many people HATED Biaxin because it made them feel crazy. I was convinced it was going to send him right over the edge, but thankfully it has brought him back to the best I've seen his moods since school started. He's funny but not super silly like he was for awhile. I've really missed his sense of humor. What other abx have you tried? Are you on a 10 day? I wonder if there is much difference between Azith and Biaxin. I'm assuming you are on Biaxin for mycoplasma? Or do you think it is intracellular strep? I had read so many times that switching around until you find the right one was key, but his pediatrician was so unwilling to try a macrolide because we don't exactly know what it is we are fighting here and he doesn't know much about PANDAS and had never heard of strep going inside the cell. I'm so grateful Dr. T. offered to talk with me. I have to laugh now to think our doc told me a month and a half ago that an abx wouldn't affect his mood, so switching around didn't make sense. He wondered if we should try a new SSRI since the only thing Zoloft did was make my son manic. I see where he is coming from, but boy howdy is he WRONG on that one. I hope it continues to work for us. I would be heartbroken if we backslide now. I'm am trying so hard not to let his progress or lack thereof affect me so much because he knows it does and it gives him the guilts. On the Omnicef, he'd flip out, I'd flip out and then we'd both be sobbing. He told me he thought I'd be happier if he ran away, which of course tore me to shreds. We talked about it again last night and he said he doesn't feel that way at all anymore. I hope things start to improve again for you. It is so hard to watching and wondering what is going on. I feel like I'm constantly rating his behaviors. I look forward to the day we can just BE.

My son has one eye that bounces back a bit when he looks far to onside. The doctor is aware of it but didn't seem to think it was a big deal. One of the first things I noticed when my son was 7 was that he would shake his head side to side. He told me he had to do it to "keep the color in the world". He didn't do it for very long though. It was also while he was watching TV.

Sorry you are here because your child is having issues, but Welcome to the Club! You are in the right place because it sure sounds like PANDAS to me! You are lucky to have noticed such a clear correlation between the strep and his behaviors. This board has been a life saver for me! There is so much information and the support is so important to me right now.

Do you think augmentin xr is warranted to ask for until we can do the ivig or sticking with the augmentin 875 is sufficient - we are looking at being able to schedule it within 2-3 weeks, and then depending how far he is booked out prob May?? I asked Dr. T. to switch us to the Biaxin XR simply to help make taking that and the supplements I give him more convenient. You shouldn't give magnesium or probiotics with it and those are two of our staples. I don't see any reason not to ask.

Hard to say. I often wonder with my younger son if he is having issues as well or if he is picking things up from his brother, or if he is doing something that is age appropriate. Yesterday we had to use a public restroom. My PANDAS son has always hated using one. When he was little it was the loud noise of the toilets, now it is the idea of someone else's behind having touched the seat. So yesterday my younger son really had to go but was fighting me the whole time, saying he could hold until we got home but that wouldn't be for several hours. Finally he said, "do you have any idea how many other people have used this toilet!?" which made me wonder. But it also sounded exactly like what my PANDAS son says about public restrooms, same tone, same expression, same words. So I don't know. And honestly, I prefer the privacy of my own bathroom as well, but I don't remember even thinking twice about it as a kid. My husband says he always hated public restrooms though. Every time my younger son does something involving evens or certain numbers I worry. He has definite favorite numbers, but I don't see him having to do something that many times. The other day he would put a piece of bread in the toaster, then go around the island a certain number of times, take the toast out and eat it. Then he did it again. I asked him why that number and he answered, because that's how I measure how long to keep it in the toaster so it is the browness I like. Which makes sense in a way when you are 7 and can't really tell time yet. I know most kids in 1st grade do things like that (don't step on cracks in the sidewalk, or only walk on the black tiles on the floor, etc. I remember doing them myself) but when you live in PANDAS world, those thing really start to make you wonder!

From our experience regarding my son's moods and emotions, I think it is the Augmentin. A lack of stressors may be contributing, but when my son is in an exacerbation pretty much anything can send his mood into a tailspin. From the stories I've read, mood seems to improve first, then ocd, then tics. Maybe not for everyone, but that seems to be the trend and that is what I'm noticing with my own son. Like I said in my post, both he and I can handle the ocd and tics better when his moods aren't so crazy. Hang in there. It sounds like you are making it work and things are headed up.

Wow!! I thought the shiners were pretty indicative of severe allergies! Maybe other sinus issues? Did you do both environmental and food? What is interesting with my son is that he's always had puffy bags under his eyes (not ALWAYS, but more often than not) and those are gone right now but he woke up a few days ago with the shiners. My other son, who displays seasonal allergies both spring and fall also has them going on. Zyrtec seems to help but I'd like to know what it is they are each allergic to.

As many of you know, we switched to Biaxin last week. Our test results have been very uninformative but we know that illness causes an exacerbation so we decided to see what happened with a switch of abx. As with Augmentin, but even more so, we saw an initial improvements within a few days. His head cleared up immediately which confirms my hypothesis that he is getting bacterial sinus infections. His mood went from extremely turbulent to wonderful. His moods are stable, he has reasoning ability back, he has patience and flexibility. The things that normally frustrate him still do, but he just handles it soooooo much better! Even with a bit of stomach upset and headache the first two days, his mood was OK. His sleep was erratic and he seemed really hyper though. Still worth the improvements. By day 5 some of his main tics and his evening up rituals were showing again. The frequency is much less and the intensity is much much less. He says that it is still so much less than before and that he almost doesn't even notice it right now. Things get worse, like they always have, when he stressed or tired or has eaten something that makes things worse. But he is so calm about it. I noticed last night he was shaking his head and shrugging a bit and mentioned it seemed worse and he answered, so matter of factly, "well i'm tired mom. of course it's worse. i need to get some sleep." all of a sudden he sounds like a 10 year old instead of a 6 year old again. he is getting up early, getting all of his morning chores done so that he can read and enjoy the morning. he plays with his brother, helps around the house and gets his homework done without complaint. it's pretty amazing how nice it has been. His gut has been fine and the hyperness has gone. He still is waking at night, but he just goes back to sleep, in his own bed. At this point, I think both of us could handle the amount of tics and ocd if his moods would remain this stable. The Biaxin seems to have done what the Zoloft didn't even come close to doing. I'm sure it helps that Spring is finally here and the sunshine and warmer temps are part of the improvement as well. We always see an improvement in the Spring. I'm hoping Dr. T will keep us on the abx for awhile. We also plan to do the cunningham test just to see where that comes in at. I've been reading a ton about inflammation recently and even though we have been moderately strict with his diet, I think it is time for an overhaul for the whole family. No more crap. We all tend to be hypoglycemic so I'm going to try to switch us over to a Zone type diet. I'm also thinking about upping the fish oil he takes. I'm also going to set up an appointment with an allergic doc. He has "allergic shiners" and I'm curious about what he's allergic to. I'd like to know if he has any food allergies as well. It would be so much easier to cut some stuff out of his diet if I had a doctor backing me up. I'm feeling optimistic but apprehensive as well. It seems like every time things start going well, he gets sick and we start all over. But I'm trying to take it day by day and enjoy the good periods. I'm wondering how others who have recently switched abx are doing?

i give my son zytec. it seems to help the allergies and i don't notice a difference with his tics one way or the other. i'm planning to make an appointment with an allergy doc soon because i can tell he has allergies and i don't like the idea of trying to manage it with an otc medicine. i do think the allergies make his tics worse and since we are thinking he has PANDAS i'm wondering if the inflammation is why he tends to get upper respiratory infections so often.

That is really interesting! My son had so many ear infections by the time he was 18 months that we did tubes. The ENT said he had a solid layer of goo that just never went away so each time we'd stop one abx bacteria would start to grow again. They scraped it all out when they did the tubes. He did well while the tubes were in (they fell out when he was about 4 1/2), then we started seeing the strep. He had his tonsils out last winter and with those the ENT said they were huge from what we could see on the outside, but they were ginormous going back into his throat. He said they were totally full of crud. He also gets sinus infections. This current exacerbation he ended up with an ear infection and really cruddy sinuses while he was on augmentin. Then Omnicef kicked the ear infection but not the sinus junk. Biaxin seems to have kicked both. This morning I was looking at his face and he has what appear to be allergic shiners. We haven't seen the ENT but I'm wondering if we should go see what is going on in there again. I've been wondering if he has some sort of allergies that inflame things and then other stuff has a chance to start growing. So maybe an allergy doc instead. He has always seemed to have trouble keeping a clear upper respiratory tract. Maybe if we could figure out why he continues to be inflamed and gunky in his head, we could get a handle on the rest of it.

simplygina, anything interesting since starting the biaxin? know its only been a couple days, but curious. we are also negative on myco igm......you did not have anything remarkable on the other type abx before this? thanks Faith Actually I'm pretty amazed at the progress. His sinuses cleared up in 24 hours. He had 1 day where he felt sick to his stomach and had a headache but was fine after food and an epsom salt bath and some ibuprofen. Yesterday he was evening things up quite a bit but today I haven't noticed anything at all. The biggest change (or happiest change for me) is how much his emotions have improved. He is just rolling with things and playing and not stuck on anything at all. So completely different from last week. And his appetite is vastly improved. Might just be clearing the sinuses, but he is eating things he wouldn't even touch before, like potatoes, so whatever it is I'm glad. Is it the Biaxin? It certainly seems like it. It's always better when Spring gets here though. I thought it was a seratonin issue because of that but Zoloft did nothing. He told me he still has some things going on but they aren't like they were last week. His sleep has been a bit erratic and he was really hyper all weekend but seems better today. In fact, today would have to be considered the best day in I can't remember how long. He was just really pleasant. The only scary thing was he had a strange green stringy bowel movement. I didn't see it but I told him he needs to get me if it happens again. The doctor said to let him know if it actually becomes diarrhea but so far he's OK there. With the Augmentin I did notice an improvement but he still ended up with an ear infection and a sinus infection. The Omnicef cleared the ear but not the sinuses and his moods, tics and ocd were as bad as they've ever been. I'm guessing we were dealing with something that neither one of the other abx was touching. I guess the next question is what do we do after we finish up the 10 day course. We are going to do the Cunningham test as soon as I can afford it. Phrophylactic abx seems like a good idea at this point, but I'm still leary I guess. Considering some natural antibacterial/virals like oregano oil and olive leaf. He's already taking a bajillion supps, may as well add two more Just feeling our way thru this really. Hope your son is doing well!

If definitely does work. My son wouldn't be in the same room with garbage at one point. We had him rank the garbage cans in the house from 1 being not gross and 10 being he couldn't even contemplate looking at it. We started with the lowest level one (the bathroom believe it or not) and he had to take it out every single morning. Each week he moved up. The kitchen was really high and taking the outside can to the curb was a 10. He progressed so quickly I was amazed. One day I saw him standing in front of the TV holding the garbage can (pretty much had it hugged up to his body) totally unaware of it while he watched something on TV. I totally teared up. It was such a different place than he'd been. I find the hardest behaviors are the evening and just right ones. But so far, when he decided to tackle one he does really well. Unfortunately I have noticed that if we don't stay on top of it, some of the issues come back and we have to start all over. We have also been doing a lot of "mindful awareness" therapy. When he's in the middle of a compulsion I have him stop, describe what he sees, smells, touches, hears and he describes what he is doing as a running commentary. It seems to stop the compulsion really quickly. I almost think it works better for the evens and just rights. It also seems to work well when the ocd and tics morph together. Congrats to you and your son! It is so great to see progress and to know that your son is capable of overcoming these things. He must be very proud of himself as well!

Day 3 and the complaints about stomach aches and headaches seem to have disappeared. He did have a bowel movement that freaked him out though. He said it was very green and stringy. Anyone experience anything like that? I told him I know it was kind of embarrassing but tomorrow I'd like to see it if it happens again. We are trying Biaxin because we know it gets worse when he gets sick, but we can't isolate what is causing it. His mycoplasma was normal, lyme and strep all normal too. He may just be one of those kids that doesn't mount much of an immune response though so he doesn't get raised titers. Hard to know. We are going to do the blood draw for the Cunningham test tomorrow though. We figure Biaxin should just about knock anything out. We tried Augmentin and he still ended up with an ear and sinus infection. Omnicef knocked out the ear infection, but his sinuses were still plugged after more than 10 days. The Biaxin seems to have cleared the sinuses. I tend to think he harbors strep in the sinuses because he gets that weird smell. His tonsils are out so he doesn't get the tone in his voice he used to have every time. 1 day of the Biaxin and the streppy smell was gone. His brother also has the weird smell though but he swabbed negative. He still seems to be improving, though today he was a bit worse than the past two. His mood is greatly improved. He slept with his brother last night and I wonder if that has anything to do with it. It was worse this morning and better after we gave him his a.m. dose of abx. Usually he is better in the morning and worse at night. He's been really compliant and kind to his brother and hasn't fixated on anything. He's evened things up a bit, but it's not super noticeable. We didn't really do much today, and usually by the end of a boring day spent at home he would grumpy and ticcy/ocding like crazy. I expected him to start nagging me about going to the book store but he never did. The things he is fixated on right now are still there (Percy Jackson books, getting a knee board for summer, the upcoming blood draw for the cunningham test), but he lets them go after mentioning them once. That is a huge improvement. Right now he is having a marshmallow gun fight with his brother and they are actually having fun. Love to hear them laughing and playing. I think the Biaxin does make him rather hyper though. I remember awhile back someone posted about how strange-but-awesome it is to see your kid do something he hasn't done for a long long time. The other night he came in at 2 am, scared because he woke up and realized that a light was on in the basement (he was worried about ghosts before bed though did fall asleep in his own bed which is pretty significant). I told him I must have left it on because I was working down there before I came to bed. And to our utter amazement he went downstairs alone and turned off the light. DH and I were literally stunned. Before he would have crawled into his sleeping bag on the floor and then pestered me until I went to turn it off. He usually won't go downstairs during the day alone. And tonight he ate potatoes. He has NEVER liked potatoes. Not even fries or potato chips. Tonight he ate roasted potatoes and told me how delicious they were. Pretty amazing. All in all I am seeing progress and hoping for a better week. Last week really sucked and I can't do it again. DH is leaving for 10 days this month and I've been so worried about being alone with the kids. If things continue like they are, I'm hopeful it won't be bad at all. For those that have gotten an abx Rx from Dr. T., how have you had it refilled after the first 10 days?