simplygina

I mentioned it to the doctor when we did the tests but I haven't seen the results yet, so I'm not sure if he included it. I'm thinking no, but at our appointment on Thursday I plan to make sure we get lyme titers and mycoplasma titers as well. my son is going to be soooo mad when he has to give blood again, but he did surprisingly well last time and got a banana split for his effort. I imagine he'll do it for another. I mentioned in another post that we have been weaning him off of Zoloft and we stopped the last 25mg at the same time we started the abx. I started giving it to him again and did notice and improvement within a few days. i honestly think he was going thru a withdrawal reaction. i know zoloft can be really hard to wean off and the last reduction is the worst. i think we'll wait until later this spring to do it.

That is a great article. I printed it out and plan to present it along with other "evidence" to our pediatrician on Thursday. He's been a little on the fence about the long term abx treatment. If we know other types of auto-immune diseases are caused by strep anti-bodies, and we know that the key to helping these kids heal, why is there such a controversy regarding PANDAS? I just don't get it.

my son reacts immediately to red dye. we are still trying to figure out if yellows and blues affect him (i'm assuming they do), and if so what the reaction is. with red dye he is hyper, talks non-stop, acts like he has ants in his pants, and his tics go nuts. It can last more than 24 hours and probably has longer lasting but more subtle effects as well. I hate that stuff! It's dramatic enough that he checks labels and usually avoids anything obviously red. Sometimes he decides he just doesn't care though. Luckily his mood stays pretty good.

Thanks MomwithOCDSon! Hearing that someone else has had a similar experience is really helpful. He is sleeping much better. He had started to wake again in the middle of the night and want to sleep in our room around the middle of January. He's only been sleeping all night in his own room since January 2009 (waking and sleeping on our floor since he was 5) and I wasn't going back there. We searched for a solution and he decided that it would help if his little brother slept with him. After about 5 days on the abx he decided he didn't need anyone to sleep with him. And for the first time ever, he has gone to bed without having DH or myself lay down with him for about 15 minutes. He has just gone in and gotten into bed and fallen asleep and stayed asleep all night. Which is great, except I'm not ready to give up the cuddles! And he is sleeping later but getting up and getting going without any resistance. For the past 2 months or so he has been really oppositional in the morning, even though that is actually his best time of day. So that disappearing really is progress. I think I may start using Buster's charting system or something similar so I can keep track of all the variables. I hope we don't completely fall apart before we see the doctor on Thursday.

My DS10 is on his last day of Augmentin 875 mg twice a day as a trial dose to see if abx will help. It has been an interesting 10 days. Lots of ups and downs. Half way through he was super emotional and angry. He seems to have gotten past that but is still really touchy and sets off easily. He is managing to get control pretty quickly, but he hasn't been this emotionally volatile in awhile. Actually the whole family is really touchy lately. Here's what I'm seeing: Tics-reduced in frequency, intensity and duration, but still there for sure. He has a neck craning tic where it is like he looking over his shoulder. We know red dye #40 is a trigger for him, as is High Fructose Corn Syrup. He decided he didn't care and went ahead to eat all his Valentine's candy. So maybe the tics would be much worse if he wasn't on abx? OCD-is better and worse. He's not evening things and touching things until they feel "just right" like he was for the past 6 months, but contamination is back after over a year with no real issues. He also told me his disturbing thoughts are back (what if I hurt the cat? what if I hurt my brother?). The inositol seemed to have booted those since last Fall. We haven't been quite as careful about making sure he gets it 3x a day though, so that may be it. I was hoping abx would really get rid of that. Seperation Anxiety-worse. I was working in the basement today and he was rushing around the house trying to find me, convinced I'd been murdered. He is sleeping well though. We have all tested negative for strep in the past week, so that isn't it. He doesn't seem like he's coming down with anything either, except possibly allergies. His brother definitely does have allergies right now and Zyrtec is working for him. My skin is really sensitive and breaking out like crazy and I woke up with a cold sore for the first time in 2 years. So maybe there is something going around? We ran out of the supplements he's been taking (the Bonnie Grimaldi mix), so I've been giving him separate pills of most of the stuff in them, maybe it isn't working that well? Maybe all the junk from the holiday is getting him? Honestly I don't think he's better, just different. The abx seemed to shake everything up and make it all different. I don't think 10 days is long enough at all. We see the doctor on Thursday. I'm worried that without the abx we will be headed back downhill. I haven't seen his test results yet either. Should I ask him to continue the Augmentin? or should I consider switching to Azythromyacin? He has taken so much amoxicillan over the years for ear infections and strep that I'm wondering if it isn't effective for him anymore. And I'm not even sure his doctor will agree to more abx. Ugh. I'm just so sick of all of it. I have not idea how to proceed.

I gave my DS GABA twice. Both nights he was totally hyper before bed and couldn't sleep all night. Did it twice just to make sure that it was the GABA. Most nights we give him 3mg melatonin, an advil, fish oil, zinc, inositol, and another dose of magnesium (which is also has a tranquilizing effect). He takes Epsom salt baths with lavender essential oil 2-3 times a week as well. When he is having and exacerbation it doesn't always do the trick but when he is not so bad it does. I've been known to break out the Benadryl after a few bad nights. And if he doesn't have the melatonin he will come out and ask for it after about half an hour. The longer he has to wait to fall asleep the worse it gets. Keeping him asleep...well that has always been another matter entirely, but the past week he has been letting his brother sleep with him and it seems to help (even though they fight for the first 15 minutes they are together). Sleep has ALWAYS been hard with him. He has only slept thru the night in his own room for about 6 months when he was 4 and from January 2009 until now. During Dec. and Jan. he was having lots of trouble again (convinced aliens were going to kidnap him) but I decided he simply was not coming back into our room. 8 out of 10 years being woken up at least once is just WAAAYYY too long. He managed to work through it with the cooperation of a very willing little brother who will do anything for some positive attention. Also, a few other things that work well for him is no TV (actually we got rid of the TV entirely and that has helped everything tremendously. We do allow a few DVDs on the weekends) or computer games on school nights, making sure he gets a bunch of activity during the day and putting him to bed quite early. It seems his sleep window is around 8 and if we miss it we are looking at 10:30 before he is tired again. Also we figured out that he quite hypoglycemic, so making sure he has a good snack with protein before bed has helped quite a bit as well. Good luck!

We've been doing melatonin for a few years now. It's like magic! My mom asked me last summer why there seems to be such a dramatic increase in so many childrens disorders now. I told her my gut feeling is that it is our children being bombarded by so many detrimental things like fast food, too much media, decreased nutrients in the soil, environmental pollutants, etc. After reading this book I realize that my instincts have been right. I think that if we can keep the strep at bay with abx and work on healing my son's system, he'll be fine eventually. It will take some time but I truly feel like we can lick this thing! Makes me want to move out to the boondocks though and become an organic homesteader or something but I guess we can't shield them from everything.

I've been wondering the same thing. We are having the opposite results though! We are on day 7 of 875 mg of Augmentin. We saw lots of improvement the first 4 days or so. Days 5 was angry, had almost zero tics, but more noticeable contamination issues. Wouldn't be anywhere near his brother, couldn't stand looking at specs of anything on the floor, wouldn't take a bath, only a shower because it was cleaner, etc. Contamination hasn't been much of an issue for the past few years, it has mostly been evens. Day 6 was a cross between angry and emotional. Had a fight with his friend and felt like his karate instructor was really mean for making them do drills for not listening. OCD was pretty much gone but a "craning" tic, as he calls it is back both for his neck and hand. It's like he's break dancing. Plus he's back to doing a throat clearing one. But the duration of all his ticcing episodes is much shorter. Like maybe twice an hour (that I'm noticing). He was short and snippy with us and down right mean to his brother. Almost unbearable to be with. Had a crying jag before bed. He also just seemed exhausted. He was totally off his Zoloft for a couple of days before we started the antibiotics and I couldn't decide if he was reacting to the abx or withdrawals from the ssri. Or if the horrible smog we are dealing with is causing an allergic reaction like it is with his brother. I gave them both some Zyrtec at breakfast. I had him take 25 mg of Zoloft yesterday evening and this morning. He woke up more refreshed and happier this morning, I'm thinking it is the Zoloft. We will just have to wait to wean off completely until later. But it could also be that it snowed last night which cleared the air. After school he was grumpy again (he usually is after school until he eats) but less than before. He's snippy but recovers quickly. He sat down to get his homework done without me reminding him, though his handwriting is as bad as ever, which it looked much better last week. He is willing to share and be by his brother again. I asked him to rate where he is at with 0 being no change at all with tics and OCD and 10 being totally gone. He says he's probably a 6 or so, but emotionally he feels like he's -5. We only have a 10 day course of abx and we don't see his doctor until next Thursday. I'm wondering if it is better to finish this course up and see if he regresses before the appt. or if I should call his doctor and see if we can get another 10 days. His tummy seems to be holding up OK which was my biggest worry. I know I can't expect an instantaneous cure, I guess I just didn't expect the emotional aspect to get worse! And I didn't expect there to be so many variables (partially my fault) that could effect how he is doing!

I spent yesterday reading posts all the way back to 2008. Someone posted about this book so I picked it up at the library. What a wealth of information! This is a doc who totally gets it. The book seems to mainly address Autism, but he says up front that he considers so many of the illnesses that are climbing in record numbers to be different physical manifestations of the same problems. He gives pretty specific info about what medicines and supplements to give kids (with dosing for children) to help their bodies recover. I stayed up until 1 am to read it. He does talk about PANDAS a few different times, without going into tons of detail about what is going on in the brain. He recommends abx, but I was happy to see good info regarding inflammation and methylation as well. If you have questions about what to give and why and how much, this is the book!

I'm wondering if anyone has ever done a feng shui consult? i was reading a few months back about geopathic faults causing some people to have problems. the reason i ask is because my son has never wanted to sleep in his room since we moved to this house. he'll sleep just about anywhere else if i let him. i've thought about having my two boys share my other son's room to see if it helps. we could use his room as an office/play room. DH is opposed because he feels he needs his own room so he has a private place to decompress when needed, which is a valid point. anyway, just wondering. i've thought about finding someone to come "read" the house just to satisfy my own curiosity. Also wondering if anyone has read any of Annie Bond's books? She is extremely sensitive to toxins of all sorts and has written several books about having toxin free homes, including EMFs. Her website is www.anniebbond.com. I've also noticed my son keeps unplugging the electric alarm clock i gave him for his 10th birthday. when i ask him why he just sort of shrugs. maybe he knows something subconsciously.

that is so interesting! we don't have a home phone and only use our cell phones but he almost never talks on the phone. the router is an interesting concept because we leaves ours on all the time. i don't know much about EMF, though I've heard of people being sensitive. i've read about devices that supposedly neutralize them but i've always thought they seemed a little too "woo-woo". some people swear by wearing copper or wearing magnets in their shoes. i'm going to google it and see what i can find out!

Sorry to hear your son isn't handling it well. The pharmacist warned me it can be bad that way. So far so good tummy-wise for my son. I have been giving him 2 different probiotics during the day, making sure he eats before he takes the abx, and he takes it with milk. Also he's been eating a lot of yogurt and bananas. I've asked him how he feels and he claims his stomach is fine. I hope he remains able to tolerate it.

DS is both better and worse after 5 days on Augmentin. He's more volatile than he has been in a long time. But he recovers quickly. He is also really witty and funny like he used to be. The tics are much, much less. Vocals are gone. Only a stomach tic seems to remain and its frequency, duration and intensity are much less. He says he is also touching things still but I haven't seen it much. His OCD is worsening, or at least changing. He's never had huge contamination issues but yesterday he wouldn't sit by his brother because he didn't like his breath. It wasn't bad, he said, just didn't want to be near it. Funny thing is he is more than willing to sleep with him every night. He is also struggling at school because the little bits of paper on the floor really bother him. And he freaked out because someone got frosting on his backpack yesterday. But after I fed him an afterschool snack he seemed much better. He tends to be grumpy when he's hungry. He is sleeping through the night again (with his brother) but his dreams have been very vivid and some have been quite scary. He's also on his 5th day of being off Zoloft, which may be contributing or causing the grumpiness. I've noticed his mood is worse about the 3rd to 5th day following a dose reduction and I've also heard that getting totally off is the hardest adjustment of all. Maybe I should have waited to go off the Zoloft? I had heard the antibiotics seem to work better when they are off though. I also took his brother in again to have him tested for strep because he was complaining of a sore throat. I think the InstaCare is beginning to think I have a Munchausen by Proxy issue or something! Anyway it was negative again. This time the doc was a little more helpful though. She suggested that it was likely allergies because our air quality right now is so horrible (3rd worst in the nation). I'm wondering if that is also affecting my PANDAS son. Does anyone treat for allergies as well? Does Zyrtec work? I've wondered about allergies because he was so bad in the Fall when the sagebrush is bad around here. This is the first year I had seen him actually have allergies to anything. I'm wondering if he is worse in the Fall because of it. This whole process is so nerve wracking to me! If they only reacted to strep it would be so helpful, but this reacting to colds, allergies, flu, hunger, stress, etc. is so much to keep track of. I guess that's why a journal is so important. I'm rambling this morning trying to process it all. I appreciate all your input. Thanks!

I spoke too soon. He came home from school today rather volatile and was freaking out that some frosting had gotten on his backpack and shoes from a class birthday party. He has also been complaining that he can't be by his brother because of "his nasty breath". Ugh. Hopefully this isn't going to last long.

my son had one november 2008. he hasn't had pharyngitis since but i wouldn't say that it helped the PANDAS. we had a period immediately following the tonsillectomy that he was symptom free but i'm thinking that had more to do with the abx pre and post op than the operation itself.

our pediatrician does know about PANDAS. he has treated one other little girl. i think they must have caught it quickly with her and a round of antibiotics did the trick. he told me about her awhile back though. i should ask him if he's had to treat her again since. he hasn't had a recent infection (that I'm aware of). he had his tonsils out last year and since then he hasn't had pharyngitis. he did tend to be rather asymptomatic even before the tonsillectomy though. i could usually just tell by a certain sound change in his voice. since the tonsils are out, he may not get that change anymore. his brother did have strep earlier in the fall and i noticed a marked deterioration in my son. i didn't have him tested for strep then though. we started talking to his doctor about PANDAS a month after that and his throat culture was negative. we started the abx to see if there would be an improvement warranting their continued usage. our first therapist did suggest we get his titers measured i recall. but then she told me that treatment was the same whether it was PANDAS or just OCD so i didn't see the point of making him have a blood draw. we live in Utah and i don't think it is being treated much around here. we have a wonderful children's hospital that is supposed to be very "state of the art" but when i called to make an appointment with a neurologist last Fall, the receptionist told me they don't treat "mental illness" so they could look at the tics but we needed a psychiatrist for the OCD. i ended up canceling the appointment because i knew the ocd and the tics were related and i didn't want to spend a lot of money to have a specialist tell me what i already knew about tics.

Well we are on day 4 of Augmentin for my son. I know it is a bit early to know for sure if there are changes, but it seems like things are getting better already. On Saturday he had some fruit punch. Usually anything with red dye is a major trigger for tics galore but I didn't see anything. We also watched a DVD, which also is usually a trigger and I didn't see anything then either. I asked him what he thought and he said he feels like there is less, but they are still there. Last night while we were laying in his bed talking before sleep I noticed that he still had some of his usual tics but that the severity was so much less. He'd do it once or twice and stop. Plus the intensity was much less. Like he was doing them softly instead of full force. OCD seems to be less as well but not as dramatically reduced. And I noticed that his emotions are just a bit more even. He got a new Nintendo DS game that he spent a lot of time playing. Usually there is quite a significant rebound effect after he plays. He still was grumpy is you interrupted his play, but afterward I didn't notice the usual increase is defiance and snappiness i usually see. And no increase in tics. He may have just had a good weekend, but usually weekends are not good because he stays up later and eats more crap. Has anyone noticed a correlation between the severity of their symptoms to how quickly the abx work? He seems to be on the mild side compared to so many others. I was wondering if the meds might work a bit more quickly because of that. I'm trying not to read too much into yet, but DH agrees that he seems improved. On another note, I was at a party this weekend and was talking with two different friends I don't see often. Turns out both of their boys have OCD and tics as well. I asked them both if they had ever heard of PANDAS. Neither had. I suggested they get their boys tested for strep. I'm amazed at how little awareness there is about this disorder. I feel like Beth Maloney lately trying to get the word out. Why isn't a strep test the first thing recommended for a child exhibiting OCD symptoms?

Poster name: simplygina Location: SLC, UT Born Jan. 2000/ age 10/ male/ 78 lbs. History: Lots of ear infections as a baby. Tubes at 20 months. Started talking like crazy immediately following. Some sensory integration issues as a pre-schooler. Had strep several times a year from Kindergarten on. 1st grade: chewed shirts to shreds. Began a stomach tic. started having contamination issues about how clean his brothers car seat was. 2nd grade: begins bringing his garbage out of his room. begins shaking his head whenever he is around garbage. begins contamination issues about whether or not he has germs on his hands after going to the bathroom. begins asking me about eating feces and urine. Diagnosed with OCD in February. Major sleep disturbances and separation anxiety. We do ERP in regards to the garbage and it helps. By summer he is pretty much symptom free. 3rd grade: one strep infection after another. new therapist because compulsions are back. need for symmetry in everything! finally decide to get his tonsils out . pre operation he comes down with strep again and a sinus infection. takes 10 days of antibiotics, has operation 1 week before Thanksgiving. amazing calm and rational about it. post-op antibiotics. best christmas of our history. he is happy, not anxious, no ocd or tics. begins sleeping in his own room again all night for the first time since Kindergarten. school starts again in january and it all starts up again. therapist recommends ssri. son starts zoloft. by summer he is doing well again. stop therapy for the summer. his zoloft is slowly bumped up to 100 mg. I'm not seeing a difference. summer is pretty good, gets along with with brother. 4th grade: tests into the low math and middle reading classes after previously being in the high clases for both each year. handwriting is atrocious. starts telling me about disturbing violent and sexual thoughts. find a new therapist that recommends inositol. starts vocal tics and several new motor tics. begins twirling between steps. brother tests positive for strep. i realize that there seems to be a correlation. talk to his pediatrician in october about PANDAS. he says he's had one other little girl that they caught immediately, treated and she's been fine. throat culture is negative. we bump up the zoloft to 150 mg. tics worsen and he seems manic. i decide to go back to 100 mg with immediate difference. decide to wean him zoloft entirely because he is gaining weight. begin taking bonnie supplements with some success. notice red dye is a trigger. the inositol starts working wonderfully and disturbing thoughts disappear. no difference in tics or other compulsions. cbt works on the swirling while walking. january 2010 i read Saving Sammy. I sit down and write out his history and realize that there is a definite correlation between symptoms and strep infections. make appt. with pediatrician. Diagnosis: still pending really. on a 10 day course of Augmentin 875 mg. doctor is willing to entertain the idea that it could be PANDAS. He is on his 3rd day and we feel like we are already seeing a difference but I am charting everything just to make sure. Previous diagnosis of OCD and tic disorder. Test results: still waiting

They do make a powder magnesium oral supplement that you can mix into food. I get ours at iherb.com. It's not expensive and it you mix it with juice it doesn't taste bad.

My son went through a shirt sucking phase in the first grade. It was awful. He would come out from class with a dripping wet shirt that was stretched out beyond repair, sometimes with holes because he would twist and chew as well. He had a great teacher but I could tell it grossed her out. I noticed that when a tooth was cutting it was worse. By second grade he quit. I remember sucking my hair as a young child and then realizing one day that I didn't anymore. Not sure if it has anything to do with a certain diagnosis or if some kids just go through a phase.

wow, I just finally read this in its entirety. it's crazy how the tics and compulsions seem to be pretty much the same for all these kids. My son spends hours in the bathroom these days trying to get it all out and then wiping and wiping and wiping. At 10 he doesn't want me in the bathroom of course. One day he was taking forever and we were late for something and exasperated I finally went in a wiped for him. For some reason he accepted that it was good enough and that point. He told me later he wished I could always wipe for him but he know that would be weird. I fully agreed. Anyway, these boards are a lifesaver. I guess in a "misery loves company way" it is nice to know that we aren't alone.

My son has always had sleep problems. He slept all night in his own bed from 4-5 years old but when we moved he started coming back in. He's now 10. In Nov. 2008 we finally had the tonsils removed because he's had strep so often, they were HUGE and always had been, and we hoped it would help the sleep. By January 2009 he was sleeping the entire night in his own bed. He also started taking Zoloft 25mg at that point. I'm not at all sure if it was the tonsils, the antibiotics because of the operation, age, therapy or Zoloft. Unfortunately in October he started to trying to come in again. Before he would wander in half asleep and climb into his sleeping bad and zonk back out. Now he is WIDE awake. I won't let him sleep in our room anymore-so he reads if he isn't terrified, or climbs into bed with our other son if he is. Two nights ago he had his brother come into bed with him plus he rounded up the cat and the dog to sleep in his room. He didn't try to come back into our room so I guess that helped. I read somewhere that a lot of night waking actually has to do with low blood sugar and needing more food. When I can get DS to grab a snack, it usually helps. Unfortunately he is afraid to go into the kitchen alone so I have to go in with him. I need to think ahead and have some good snacks in his room that don't require refrigeration. I try to get him to eat enough at dinner to get through the night or have a decent before bed snack but he isn't much of an eater. I thinking by 1-3 am he needs more fuel. He definitely has hypoglycemia and I've noticed that hunger is one of his main triggers. If I can keep him fed every 2-3 hours with a balanced mini meal he does much better. Maybe you could see if a snack would help? String cheese is nice because it doesn't leave crumbs.

Thanks everyone! Your experiences are so helpful! I guess we'll just take it as it comes and do the best we can.

I read Against Medical Advice about two months ago. Last night as I was trying to fall asleep (started antibiotics yesterday and I'm just a nervous wreck because I want to see improvements SO BADLY) I'm not sure why but I was thinking about it and I was thinking the same thing. I bet it was PANDAS. After all the kajillion doctors and specialists and meds they had that poor kid on, and the alcoholism and weight gain and self-esteem issues he had to go through, no one ever once that it might be PANDAS? I wondered that the entire time I read the book. Thank God it just went away for him. I think it was great how close he felt to his parents the whole time and I know without a doubt that they were doing the best they could, but I just kept thinking about him smoking and drinking and eating so much crappy food. That had to make the inflammation so much worse. I don't think it is much of a coincidence that once he totally cleared his body of all the toxins by going on the mountain retreat that his body responded and so much of it started to go away. It was such a touching book.