TessaKrista

I am worried that my 8 year old son has a hernia and might end up having surgery. He lifted some heavy stuff, and later on while he was in bed, asked me why his tummy hurt so much. I discovered that there was an uneven feel to his left side as compared to the right side of his belly button area. I became ultra worried. Decongestants and antihistimines make his tics skyrocket, to the point where they last forever and ever...4 months on end. Won't do that again. He finds that bubble gum gives him shoulder tics, approx one hour after he chewed gum on "gum chewing day" at school last year. He hit his head on the soccer post in the summer, and the next day, he had neck tics that lasted approximately one month long. If he has too much dairy, he has tics. If he swims in pools, he has tics. When he gets a bit sick, the tics start a bit. So.... I am wondering if anyone out there has had any adverse reaction with anesthesia and their child's tics starting up again after an operation. After his strep experience, I have become extra vigilant about him gettin strep, to prevent the horror that happened before. I keep his stress levels low now, and emphasize having fun, instead of a whole bunch of programs. I am still a big worrier though. Tonight for example, when he told me that his abdominal area hurt, and I saw what appeared to be something out on one side as compared to the other side, I got really scared, and started freaking out in a worried way, and asked my husband to come and help out, because I was too worried to be effective. My son started crying, because I told him that I didn't know how an operation was going to impact on him, and I told him that I didn't want him carrying heavy things (the food drive stuff for school and this heavy box that he lifted in the car). I obviously worry a lot about him. My world really changed when Pandas hit our home, and tics accompanied them. Any feedback is appreciated. Thanks....

I am worried that my 8 year old son has a hernia and might end up having surgery. He lifted some heavy stuff, and later on while he was in bed, asked me why his tummy hurt so much. I discovered that there was an uneven feel to his left side as compared to the right side of his belly button area. I became ultra worried. Decongestants and antihistimines make his tics skyrocket, to the point where they last forever and ever...4 months on end. Won't do that again. He finds that bubble gum gives him shoulder tics, approx one hour after he chewed gum on "gum chewing day" at school last year. He hit his head on the soccer post in the summer, and the next day, he had neck tics that lasted approximately one month long. If he has too much dairy, he has tics. If he swims in pools, he has tics. When he gets a bit sick, the tics start a bit. So.... I am wondering if anyone out there has had any adverse reaction with anesthesia and their child's tics starting up again after an operation. After his strep experience, I have become extra vigilant about him gettin strep, to prevent the horror that happened before. I keep his stress levels low now, and emphasize having fun, instead of a whole bunch of programs. I am still a big worrier though. Tonight for example, when he told me that his abdominal area hurt, and I saw what appeared to be something out on one side as compared to the other side, I got really scared, and started freaking out in a worried way, and asked my husband to come and help out, because I was too worried to be effective. My son started crying, because I told him that I didn't know how an operation was going to impact on him, and I told him that I didn't want him carrying heavy things (the food drive stuff for school and this heavy box that he lifted in the car). I obviously worry a lot about him. My world really changed when Pandas hit our home, and tics accompanied them. Any feedback is appreciated. Thanks....

Hi, Just wanted to let you know that I have been using this cereal, and it has been helping. We had a horrible time last year when things started with strep and pneumonia and coughs too. My son went on a few weeks of azithromycin, I kept stress to a minimum, I did the stuff he wanted to do, which was soccer all summer, and didn't put pressure on his academics like I did before. Things changed with the azithromycin, but there were times when things would slide when sugar was added to the mix. Cod liver oil, flax oil, and fish oil are no nos. I did the wheat free thing, and the dairy free thing all summer. Then I stumbled onto this great baby cereal that I remember giving him when he was small: Nestle Rice Cereal. I bought him the one that says to add water, and the one that says to add milk. I was trying to find cereals that didn't have corn, wheat or sugar, but were fortified. My real goal was to find something that was gluten free. So, I bought some of this, and he loved it. Yes, he was much too old to be doing the baby food thing, but rice cereal is rice cereal after all. He preferred the one that said to add water. So, there is a little bit of milk in it, but not enough to cause any reaction like the corn in other cereals, or the wheat or the sugar in other cereals. He did amazingly on it, so I bought a lot of it. When it went on sale, I bought so many, that I cleaned the store out, and asked for more. I have a bunch in my drawers, and he just loves it, and I am so happy to give him something that helps him out. I am guessing that it works because of the mix of vitamins and minerals, and it doesn't have sugar in it. There is also no fish oil in it, like so many products. There is no corn in it, which he reacts to. I love the version that you like too, which is the one with the blue bear. I have now been trying to get more to continue to stock up on it, and notice that they have changed their formula. I notice that it doesn't contain the same B vitamins as the one with the Blue Bear on it. I thing that B12 and B6 are important. It has magnesium. It has iron. It has calcium. It has niacin, which is so important for reducing tics. It has the B vitamins. It has helped my son. I am very sad that they changed it to some new variation, that no longer has vitamin B in it. I don't know what I will do when I run out! I am so scared. It is the only cereal that works for my son. I tried so many! I used to give him a lot of oatmeal, and that just didn't do the trick, probably because there were no vitamins, and because it is oats, rather than totally gluten free. I saw a drastic change with the supplementation in the Nestle Rice Cereal. We have been using the one that says "add water" for many months now, and love the original one with the Blue Bear too. Do you know where I can order more? I bought so many of them, and wish that I had bought even more! I live each day one day at a time. I am always fearful of what happened to him, and to have it come back. It lasted so long. I see glimpses every so often, and I too, have noticed that fevers affect my son, and he needs to have antibiotics. I had such a difficult time securing antibiotics for him. Wow. Now, I find that I can get them from one doctor, when he is sick. I hope that she does not move away. The antibiotics and the cereal, along with epsom salt and no sugar have been life savers for me. I cry whenever I think of how bad it can get. It can get really bad. All of us can relate to seeing our chidren suddenly "change" because of pandas or pitand. I believe that all parents are extra vigilant about everything after their child has pandas or pitand. We are aware of friends who are sick, we are aware of people coughing, we are aware of parents who say their children have fevers, we are aware of people who tell us that they are strep carriers. We are aware of what works for our children, in terms of diet, and what doesn't. We are aware of what sets them off. We are constantly afraid that the worse will come again, or the worse will stay. We pray for healing. We pray that all children get better. We put our children before us, and are always hoping for the best. We see the possibility of strep related problems in other children. We see that other children might have pitand. We warn other parents about the real dangers of strep. We warn other parents to get swabbed right away. The biggest thing, is that other parents who totally saw my son's transformation, from the star of the school winning speech contests, to suddenly changing... are now so careful about strep, because they saw him change in front of their eyes. They saw my constant tears of pain. They personally couldn't believe what had happened to him. The teacher saw a transformation, and actually said that he was not the same student that she had in her class at the beginning of the year. She said "who is he"? I told her about strep, and she told me that she is totally afraid of strep, because someone she knows died of it. A coach told me that his friend died of strep too. My neighbours get their children and grand children tested for strep immediately, because of what happened to my son. One day he seemed so fine, and the next day...Boom! So..I agree with you. This cereal has helped me out too. I would like to see it continue on the shelves, because I can't find a multivitamin that won't make him react. If it has flax in it, he will react. I gave him a vitamin c supplement, and he started with the thing a bit, and I stopped it immediately. I give him orange juice only, for his vitamin c needs. Otherwise, he gets all of his vitamins from food, and the Nestle Rice Cereal...the one that says to add water. I am fearful that they have changed their breakdown of the minerals and vitamins. I would like them to know that this is a fantastic cereal. I was deeply deeply deeply affected by what happened to my son. I just couldn't function the way that I used to. My personality changed when my son changed. I saw the world differently. I saw the suffering that mothers experienced. I suddenly UNDERSTOOD some version of their pain. I no longer had the child that I thought that I had, and I could not accept that. I felt very very alone for a very very long time. I cried every night. I live each day one day at a time. I no longer push my son to do things beyond his capability, like I used to. He doesn't do a million programs like he used to. I know that getting enough sleep is very important. I try to figure out what could have caused it...if it was only strep, or if it was strep and mycoplasma pneumonia. He also had a nose that was constantly stuffed. I made the mistake of giving him an oral decongestant, and that wa not good. He cannot have decongestant any more. He cannot have fluoride from the dentist, because it brings out tics. The dental hygenist said that eggs have fluoride in them, so I totally cut out eggs from his diet. He used to eat them every day! He has had one in the past 5 months. Anyways....have to go now. Wishing everyone the best. Many hugs to all. Many prayers to all. We share a similar story, and similar pain. Here's to our endless journey to heal and help our children.

It's nice that your doctor is at least willing to read about pandas. It appears that doctors in Ontario are reluctant to give out antibiotics, unless there is a confirmed infection. Very very difficult to get antibiotics for our children. I don't know if doctors are more willing to give adults antibiotics though. I see that there is this strong consensus among pediatricians against prescribing antibiotics. Because of this forum, I have learned so much! My son's pediatrician at the time (we have a new one now) would not even test for strep when he had a very bad illness and sore throat one month after a confirmed and treated strep infection, saying that it would be positive anyways, and we wouldn't really know if it was real. So, no test no treatment. Sadly, his behaviour changed after that. I now know that this is not ok. Plus, I always suspected that he had sinus issues, but she would not even consider it. I now know that this is not ok either. When my ds7 had 10 days of 300 mg of azith and 5 days of 150mg, he no longer had this terrible cough that he had lingering, no longer had this sinus problem (he could breathe), and his chest didn't hurt. Interesting. He is prone to allergies, and it appears that anything that lowers his immune system gets him all stuffed up again. So, just two weeks ago when it was hot, I let him frolick in the very cold splash pad for a few hours, and of course, the nose thing happened again, and his ears are itchy again. He felt a little hot, but not enough to be a full fledged fever. I started seeing some of the weird mouth movements arise, but not like before. I am afraid. It all started with an illness last time, and now I am acutely aware that ANYTHING can set it off to return to that full fledged thing again. It is so scary. I am off to see who is willing to consider antibiotics, knowing the anti anti-biotic culture in Ontario. No, I have not had luck with doctors re: pandas here in Ontario. People are not willing to do the tests that we request. The tests are free, yet we have to get the doctor's consent to do the testing. There is a private clinic in Toronto that costs 3 thousand dollars to become a patient, and they claim that they will do any of the tests we like, because the tests are free. I believe that we can only have 3 visits. This type of clinic, as you know, is not the norm in Canada. All or our stuff is free. My friend told me that during the H1N1 scare, some people went to the private clinic and paid 1 thousand dollars to get tested for H1N1 at the time, because the government opted to just assume that everyone who presented with flu like symptoms could likely have H1N1, rather than testing all. Vaccines were the solution. So...keep looking. I know the story, same as you... the doctor will prescribe antibiotics only if there is a positive infection. So, we have to pass the word around, and help others whose children suddenly change.... and let them know that they should get tested for strep right away, while the infection is there. Not only will doctors treat the infection, which is good, there is also a strong possibility of eradicating pandas if it is caught right away. I read somewhere that if it is treated immediately, then the chances of eliminating it are excellent. Otherwise, we have to continue searching for good pandas doctors. There is a psychiatrist in Ontario who talks about linking pandas and ocd. If that is your child's predominant issue, then I will get you that number. Bear in mind though, that psychiatry is still using their standard meds, and not exploring antibiotics. I will have to dig it up, but there was some research funded by a pharmaceutical company regarding inflamation. I believe that it was autism with pandas mentioned as well. Anyways, when the doctor started seeing the inflamatory component, that was it. The pharmaceutical company decided not to fund any further research. Pharmaceutical companies appear to prefer that people use anti-depressants and anti-psychotics rather than antibiotics. Must be more lucrative for them. I will have to dig up that research. I have been doing A LOT of research lately, trying to figure things out, and considering plunging into research on this topic as well. Take care!

http://www.macrogenics.com/products-MGAWN1.html

Thanks to all of you who wrote me pm and on this site. I went all ready to request a number of tests, and requesting to see if there are any doctors who are familiar with pandas. Now....please try to visualize the expression you put forth when I pose the following to you. Imagine this: I have just asked you if I could meet with the Queen, King or President of the dwarf planet Pluto that exists within our solar system. Notice your expression. Well, that's what I got, with no response from the doctor. The nurse told me to tell the doctor what I wanted. OK... in the community clinics and my son's pediatrician all said that pandas is not real, it is a fad, it is controverial etc etc. Yesterday at the hospital, I ran into a mother and her son who are on my caseload of "clients" at the school board because her son presents with a myriad of oppositional issues. The mother is well educated, and a specialist nurse in another hospital. Since school is over for the summer, she took her little child into the famous children's hospital to deal with his oppositional issues. I asked about illnesses, and told her what I had learned about pandas, and this mother, the nurse, said that she had never heard of it. I now know that I will conduct my craft as a social worker differently. When children present with a myriad of sudden changes in symptoms, and the schools want their children assessed, I will add a different component to my questions to determine whether or not pandas is a possibility. Sadly though, the reality of non-believers still exists here, so at least it will be a starting point. Next year I will be working in a few schools in different areas from last year, and will have a lot of middle and middle-upper class families. These are the parent who can afford to make a difference if something happens to their children, but they need to believe, and they need to unite. We need to unite. Many of you have written in this forum about not finding support re: pandas because your children experienced their symptoms years ago when this illness was not discussed, and others have described their experiences with doctors who are non-believers, similar to my experience. Anyways...I went to the hospital hoping to get a myriad of tests done. I didn't get the blood tests. They did other things though. I was asked why I was therer a few times. I told them about: 1) the sudden changes that occurred during an intense illness and my suspicion of possible pandas, 2) the strep issues and his pediatrician's reluctance and belief that one does not test for strep any time after a confirmed and treated strep infection because it will always show up as positive, 3) the concern that he had untreated pneumonia for a while, 4) his ongoing chest pain since the suspected strep started and the possible pneumonia started, 5) the ongoing coughs, 6) the left testicle issue that resolved, 7) and pain on the left side of his back, which I have come to learn, is referred to as flank pain. I was hoping that some pandas researching doctor could meet with us and talk to us about my son's behaviours: who now presents with shoulder shrug tics, occasional mouth opening wide tics when lying down, turning his head tics which are minimal now, looking up at the sky tics when he is a passenger in the car and when he is lying down, and repeatedly touching and flicking his ear (is that a tic or a compulsion), and has decreased his fear of elevators, decreased his anxiety about me being around---although it is still somewhat there, and decreased his dislike of clothing tags (although they still bother him, just not as often and intensely as before). The doctor didn't focus on pandas stuff, and she said that she did not see tics, she instead focusses on the immediate concerns: 1)left testicle was enlarged and painful, and subsided 2) ongoing chest pains 3) possible previous strep illness and possible current illness b/c his lymph nodes are big and he has pain in the front of his throat They did a chest x-ray - which was normal. She said that it doesn't show pneumonia, likely because he took azithromycin that I had requsted for possible pandas. She said the azith is great for pneumonia. She said that he cannot have walking pneumonia because walking pneumonia usually resolves itself within 6 months on its own. They did a urine test, and there is blood in his urine. He has been referred to a urologist at the hospital. I called the urology dept, and they said that they will determine the severity, and will call with an appointment. They took a strep swab, and they will call with results. They did and EKG, and it was normal. They gave me a referral to a new pediatrician, who just contacted me to see my son on Monday. Questions: Isn't blood in the urine one of those things that can happen with strep? Is it a side effect of azithromycin?

You know, I really looked over the videos of my ds7 when he started to change in Feb (a few months ago) during an illness, and I realize that he had this huge cough that initially sounded croupy like, he had a lot of phlegm that was green eventually, he was tired, his voice was a little different, he had nasal congestion, and had a slight fever. The cough went on for a while. I thought that it was the flu. Could it have been pneumonia or the H1N1 thing that was floating around? I never considered that as a possibility. It was around the time when everyone here in Toronto and Mississauga were getting vaccinated for H1N1, and I was one of the very few parents who opted out of this new free vaccine for my kid. In Feb, during this illness that he had that seemed to linger on, he had suddenly started this mouth tic where he opened his mouth wide and pushed his jaw out, but only when I read stories to him, and only when he was watching some sort of screen. He needed me to be around him at bedtime and throughout the night, frantically calling out to me, to the point where I just stayed in bed with him to comfort him. He also started really hating clothing tags. They really bothered him. Socks with odd linings also really started bothering him. He also occasionally did this head turning thing whenever he was stressed about something it seemed, like reading a difficult passage or doing some kind of demanding homework for school. He wouldn't say that he couln't do it, he would just do the head thing. But he also started turning his head when he was on my laptop watching a video. I noticed all that back in February, and videotaped it all. I even left the camera running while I read to him at night and while he watched a program on TV and when he was on the laptop, to be able to see what he was doing without staring at him. Then at the very end of April, he added this ongoing shoulder shrug tic and clinginess. I notice that he now looks at me as if to see if I am watching him before he does the mouth and jaw thing when I am reading to him. I can see him from my peripheral vision, which he doesn't realize yet at 7, and I haven't told him about. Anyways...if he had strep, which is seems like he did based on the blood work and presenting symptoms, and also pneumonia that lingered on, what kind of tests should I request to help him out? I will be going to The Hospital For Sick Children later on today sometime in the morning. I am trying to get to the bottom of this sudden change in him, wondering if there is some infection that is still lingering, and also to deal with new presenting symptoms. He had complained about pains in his chest, but his doctor said that he was fine. I am really questioning his doctor's skills. She either takes millions of xrays, or does nothing and dismisses things. When he was very small, she just kept ordering xrays like crazy. I think now that she just wasn't experienced enough in her practice, and wanted to cover her basis. I don't know. Yet, she missed so many things. Plus, one time when my little boy was 2, she thought that my son might have measels or something, she wasn't sure whether it was an allergy to penicillin, because he had a rash on his body, but not on his face. Years later, the folks at Sick Kids Hospital did a challenge test on him, and while we talked, they told me that when children are sick, it is common for them to get the rash that I described to them. Hmmmmmm..... Anyways....with the most recent attempts at trying to deal with what is happening, I had discovered that after 10 days of azithromycin at full dose and 4 days at half dose, his chest pains ended, only to return again two weeks later, although not as severe as before. He is also complaining of pain at the bottom of the front of his neck when he breathes. Another concern is that his left testicle became swollen and painful to the point where walking hurt him. He went into the tub, and the swelling decreased and the pain subsided. He said that his testicle no longer hurt on its own, and only hurt if he touched it hard. Then, the next day there was no swelling or pain. I want to see what is going on. Perhpas an ultrasound is warranted. Additionally, he is now complaining that the left side on his back is hurting. Perhaps a kidney issue, and maybe not. A urine sample is warranted. I am going to wait as long as I need to at the hospital. His pediatrician seems to miss things, and dismisses things by normalizing them as common childhood complaints. Parents are welcome to go to Sick Kids Hospital when they want a second opinion, when they aren't sure whether or not their doctor has supplied them with the correct info, or when their doctor is unavailable. I have gone in the past, and the wait has always been considerable (many many hours). I should have just taken him there in the first place when he was sick. I used to go a lot before, but the long long wait was always a deterrent. Plus, people go to hospitals when they are sick, so I always worried about him getting worse. They have the best doctors there. I am going to have to make a concerted effort to always take him there. I am writing this message at 4 in the morning, because I woke up worried about my little guy. After watching the videos that I took of him when he was home sick and suddenly started changing, I realized that perhaps there was pneumonia there as well. How the heck did I think that he had the flu? He had pneumonia two times in the past, both of the times his pediatrician said that his chest did not sound like it had pneumonia, but an xray confirmed the pneumonia both times. Each time she explained what happened saying that she suspected that it goes deep inside of his lungs, to the point where one cannont hear it on the stethescope (sp?). I am thinking of asking the hospital for 1) an immune workup 2) mycoplasma workup 3) urine test for kidney function 4) chest xray Is there anything else that I should request? You know, here in Canada the vaccine schedules have kids receiving some sort of vaccines in between 4-6 years of age. I never got him vaccinated because he always seemed congested with a lingering cough. Then I noticed that he seemed sensitive to certain foods and environmental things, so I was concerned that maybe the vaccines would cause more probs. Something curious... before all of this started, I remember noticing at live plays and at school that he would cover his ears whenever there were very loud cheers from an audience, and when people had a microphone that was on too high, and they had high pitched piercing voices. I remember feeling that the sounds were excessive, but I noticed that he would cover his ears whenever they were too loud. Sometimes I would join him because they were excessive. Just wondering... It points to a sensory issue, and certainly the illness in Feb intensified sensory issues such as the socks and the clothing tags. Interestingly, after the 10 day full course of azithromycin and 4 day half course of azithromycin, the clothing tags are not huge issues like before. The socks don't seem to bother him like before either. The sounds though, still bother him. My dh rationalizes it by explaining that ds7 rightfully covers his ears when noises are too loud. Dh says that everyone should be covering their ears. Ds7 doesn't cover his ears with regular loud sounds like the vacume or anything like that, only loud piercing sounds, when the rock music in the car is loud, when the school plays a movie at school with the volume high, when their is loud cheering from a crowd, when someone with a high pitched voice says something loud on the microphone. He went to an ENT because he used to have enlarged adenoids when he was 3 1/2 to the point where he had difficulty breathing at night. He would stop for 8 seconds at a time, and had loud laboured breathing. Eventually that passed. The ENT and audiologist tested his hearing, and he hears within normal range. The ENT said that her son also covers his ears when things are loud. You know, I realize that the sounds are indeed very loud. That is true. However, I find it odd that he is the only kid who covers his ears when the sounds get very very loud. Just wondering if sensory issues are also connnected to this thing or not. The pain of this whole change in my little boy has really taken a toll on me. I no longer feel the overwhelming joy that I felt before. I still cry a lot. I still pray a lot. I feel responsible on many levels. I think that we need to nurture our children, and not stress them out. I think that we need to jump when they are sick, regardless of whatever perception is out there about parents that jump at the smallest thing. Better to be safe. I can't believe the high expecgtations that I had. I can't believe the pressure I put on him. I can't believe it all. I can't believe this nightmare that I am in. I still feel the pain. I look at his old videos from just before February, and I cry at the little boy that existed. I love my little boy so much. Why did I not just jump and deal with his sickness by taking him to the best hospital in Toronto? Why did I believe that it was just one of those flu things? Why did I dismiss his sore throat? Why do I listen to his doctor? Why is his doctor so relaxed about sore throats and chest pains? What is wrong with me? Why didn't I just jump and take him to Sick Kids Hospital when he was sick in February? They would have done a total workup on him. What the heck is wrong with me? Since he started grade 1, I went back to work full time. I was a college prof, and decided to do school social work so that I could have the same vacation and days off as my ds. I didn't even really want to work full-time. Of course, dh suggested that I return to work full-time since ds was going to be in school full-time. It was against my better judgement. Being a school social worker in a number of schools meant that a lot of people depended on me to be available. Even though I had 20 sick days to take, I still felt odd taking so much time off to be home with my little boy. I didn't need that job. Seriously! I needed to mother my child, only. That has always been my motto, which is why I spent his formative years with him. I was the best person to care for him. Yet...what happened to me when I suddenly went back to work full-time. What is wrong with me? I felt compelled to help other families and the school personnel. When work impacts on our personal lives, we need to let go of something. I didn't even need to work full time. The job no longer permitted me to be as available to my son at his school. He used to ask me when I would come and volunteer at his school again, because he liked me being there at book fairs, plays they put on etc. My little boy should have always come first! Always! Especially when he was sick! Instead, I just figured that he had a flu with a sore throat and fever, I stayed home with him, and still helped clients out from home on the phone. No way! This academic year in Sept, I will be working 3 days per week at the school board. I want to help out at his school. I want to be available to him. I stayed home with him for the first years of his life up until he started grade 1, and only taught the occasional course here and there, while he was in kindergarten, or evening courses when my dh was home. When I would go to Sick Kids Hospital for second opinions. I would get my dh to come with us on weekends, first thing in the morning, or I would spend the whole day there during the week to find out what was wrong. Typically I would go to his pediatrician for many many things. I was the mom who was at the doctors office with a lot of questions. The only thing that I really like about his ped is that she will take as much time as needed to talk to you about what is going on. Very rare. What she lacks in skills, she makes up for in bedside manners. She will spend 20 minutes to 1 with a child and parent. As you can figure, one can end up waiting an hour in her office for a scheduled appointment that was meant to happen one hour before. She has gotten better, I suppose that she has fine tuned her craft and scheduling more. I really wanted this experienced doctor around here who has a radio show, but he wasn't taking children on the week that my son was born. That doctor is quick and harsh, but knows his stuff. Anyways...I just felt like venting. I, like all of you, am trying to get to the bottom of this situation. I am wondering if many of you also feel helpless. If you also cry a lot. As I mentioned, I have the same holidays as my son, so I have the summers off. My dh is a prof, and this year happens to have the same months off in the summer. That doesn't always happen. Anyways....dh says that I am mourning my summer vacation away. I explain to him that I need to mourn. I am just devestated by all of this. I feel helpless. I want to be able to make everything better. I have regrets that I need to put into perspective an learn from. I need to warn others about things that I have now learned, but I know that most people need to experience something themselves in order to really consider someone elses warning. I am really mad at myself and I am really mad at his doctor for minimizing everything. Had she told me that strep is so severe that it can cause a child to become disabled if not properly treated....well...that would have made me react. Instead, she said not to test for strep after a kid has already had a confirmed and treated strep illness because it will always come up positive. Now I know how negligent that is. I am mad at myself for not just jumping to the hospital like I used to do when my ds was younger, and had an illness. I am mad at my dh for suggesting that I even go to work full-time, when we both knew that I didn't need to. I hated working full-time. I found that it took away from time that I needed to spend with my child. Even though I have the same holidays as my son, children still put on plays at school, and have speech contests, and all sorts of things. Why shouldn't I be a parent who is involved in his school life? He is young enough to appreciate it. Not too old to find it intrusive. But....the big challenge that I found was juggling when my child was sick, and explaining to one of my many schools that yes...I was going to be off again...because my child was sick, again. It is that dilemma that woman deal with, as mothers and working professionals. You know...something has to give. We cannot do it all alone. This forum is a form of support for me. Thanks to all. Please send suggestions re: tests to request at Sick Children's Hospital. I will be going there this morning.

[ If a US doctor writes a script for antibiotics, can you fill it in Canada, or do you have to come to the US? Also - FYI - pharmacies in New York State fill out of state prescriptions, so you should be able to cross the border and get a prescription filled from a US PANDAS doc if you need to, and it should not be too expensive if you can get the generic version of the drug. I don't know how that all works. I assume that if a U.S. doctor writes a script that I can use it. I will have to check with the pharmacy. We pay for our presciptions, unless we have health care plans from work that pay 85% of the prescriptions or whatever percentage. That is definitely one way to go about it. Thanks. I can always consult with a pandas doctor over the phone, and then get prescriptions for my son that way. Perhaps it has to go through some doctor here. I will see. '

Wow...I had no idea that those procedures cost so much money! Wow! I had no idea that people have been paying that kind of money for each procedure. It really should be free. That partly explains why Canadian doctors are questioning whether or not pandas is real...the government is not on board with the research, because it would then have to pay for the medical services. You are right, we are all doing the best we can, given the system that we have to work with in our respective country. Thanks for the eye opener. About the child in the school...perhaps your friend can ask the parents when they noticed changes in their child etc etc. Perhaps he can start with abx. Would the consult with the doctor about abx be covered under any plans? How does it work in the U.S? If someone from one state wants to consult with a doctor from another state, does their private insurance cover that, or does it depend on the coverage? I'm wondering if these parents could talk to Dr. K or some other doctor, and have that doctor consult with someone in their town or state to get the ball rolling as far as abx are concerned. Is there a school social worker in that school who can advocate for the family? I know that things are different in Ontario, compared to some states re: salaries for school personnnel. I was shocked to see how little some social workers make in Washington! I was shocked to see how little teachers make in some states. But...I'm sure the same is true in Canada; I would likely be shocked to see how different the salaries are between provinces. Anyways...what I am trying to get at, is if there is a school social worker---I don't know if schools in that state hire school social workers or not---have her or him advocate for this family. Perhaps she can see if they can raise funds to help this family, or perhaps there are some special funds set aside for children whose families do not have a lot of money, and this can be a starting point to getting the family connected with a doctor. I don't know? Perhaps your friend can be the advocate. I know, you mentioned that the family is not well educated and have limited insurance, plus there are limited services available. There is sadness everywhere! When our hands are tied for any reason, there is some sort of injustice happening. That family has limited means and limited access. Those of us in Canada have doctors who question whether or not pandas exists. Wait until I see the DAN MD, and I may be able to report differently to you on Canadian doctors. Thanks for the insight. Always a pleasure to learn new things. Thanks for your persistence as well. I appreciate it.

Yes, his tooth fell out on Sunday night. Would that explain the tics beforehand as well?

Oh yah...thanks for the suggestions about requesting testing done. No, my ds7 has not done any of those. He only did the strep test and antibody test, and a cbc. I don't know for sure that he had sinus infections, I was just putting it out there because he was always stuffed up, and had a constant cough. Now I wonder if the azith fixed that all up, because he no longer has either of those two issues. Question: when children's teeth fall out, does that impact on them in terms of their anxiety and tics?

Hi! Sorry, but I am a little hesitant about obtaining abx from a different country and having them delivered. I have heard some horror stories about fake pills coming to people's homes via the mail, often with some scary ingredients in them. Plus...I need a prescription. If doctors would prescribe the abx, I would have no problems purchasing them here. My main issue is finding some MD who is sensitive to this issue, and is willing to work with me to explore it further. Kimballot has provided me with some suggestions. There appears to be one doctor in Markham Ontario who is a MD. I'll have to see when he is able to meet with me and my ds7.

Hi Kimballot! Thanks for the reply and suggestions. From the site that you gave me, there is a MD doctor that I can connect with who does traditional and complementary medicine. In Canada, only doctors with MD beside their names can prescribe antibiotics; NDs cannot. I don't know if it is the same in the U.S. Plus, our medical system fully pays for any service provided by any MD, whereas some private insurance companies cover alternative/complementary medicine like NDs, chiros, massage therapists, accupuncturists etc. The Ontario Health system fully pays for any service and up to any amount that a MD provides, whereas a work (private) insurance will cover alternative stuff up to a certain point, depending on one's insurance. I no longer know how to access my ACN e-mail. I'm not sure if you were the person who wrote to me, welcoming me to the board, and inviting me to contact you if I had any questions. Was that you, or someone else? We went to St. Catherines and Niagra Falls for a few days this week, including Marineland. Although I had fun, and my ds7 had a lot of fun, I felt so helpless and saddened by the fact that I had hit a brick wall with doctors. I used to think that the Canadian health care system was really great, up until now. I realize that there are so many progressive doctors in the U.S. Maybe I am wrong, but it seems that Canada waits for the U.S. to lead the way regarding medical advances, and then Canada follows much later. Plus, it seems that in the US you can directly meet with specialists, whereas here in Canada, we need to go to our primary care physician first, request a specialist, and the primary care physician can make the referral directly, and wait times are huge, or can pause everything by running tests first, in order to determine whether or not the tests warrant a referral to the specialist. A friend who lived in New York before she married a Canadian said that she had this extra health insurance that she paid out of pocket, which gave her the freedom to go anywhere and see anyone she wanted within the medical field. She found it odd that in Canada, we have to go through our family doctor (or pediatrician) first. Hmmmm... I guess that the movie Sicko didn't explain the whole story. You know, while on our little trip away, I noticed that there are a number of things that trigger things in him, such as the smell of chlorine. We went to check out a pool in one of the hotels we stayed in, and then went to the workout room right beside the pool. The workout room smelled like chlorine. Well....my ds7 had his shoulder shrugs come back a lot and often. He had Nestea iced tea, and the shoulder shrug tics increased. Thanks again. I will look into this person listed on the DAN doctors site. I really like the stuff that I read that was written by or about the doctor who helped Jenny McCarthy's son. He believes that in the case of Pandas, the child needs to be on antibiotics for 5-6 weeks in combination with antifungals. I don't have the citation for that statement. He seemed very sensitive, and very knowledgeable about and sensitive to the following: inflammation, immune system issues, autoimmune system issues, strep, toxicity, and looking for the underlying cause and dealing with that.

I wrote on this site a while back to share my story about my ds7 with you. Just to let you know, I used the name Sweet Cheeks' Mom, because I call him Sweet Cheeks, and thought that worked as a great handle, not because I think that I am a sweet cheeks or anything like that. (How do I put a happy face on this thing?) Anyways... I had a very very very very hard time getting antibiotics prescribed for him. Did I say "very" enough times? I went to many many many doctors, and I heard variations of the same message: pandas is controversial or it is a fad. Bottom line, people here in Mississauga Ontario do not believe in it. There do not seem to be any pandas friendly doctors around here. His pediatrician said that the main children's teaching hospital in Toronto is interested in the topic. However, when I look on their website, they do not mention any pandas research, or anything to do with pandas. I was able to finally get a script of the liquid azithromycin from his pediatrician for my ds7 at 7.5 ml which someone on this site calculated it to be approx 300 mg. He weighs approx 50 pounds or approx 25 kg. I called her office and asked her secretary to please have the doctor call in a prescription for azithromycin. This is two weeks after she said that she didn't believe in pandas. This was after two weeks of going from doctor to doctor, walk in clinic to walk in clinic, and to the local children's hospital clinic. I felt helpless, yet hopeful that I would help my son. Then after getting that script, I got creative with the walk in clinic, and was able to get a second prescription for him. The doctor at the walk in clinic said that he didn't believe my son had strep right now, but said that he would prescribe it. Then I used the remaining dose to reduced my ds7's dose, and went to the pediatirican. I found that day 11 was the magical day for ds7. He was tic free. The anxiety had decreased. Even my dh noticed! He said, yes, the medicine seems to be working! I said that it was magical, but not perfect. There were some days that ds7 would wake up in a strange mood though. For example, on day 12, he woke up screaming at me saying that I was staring at his eye, and he couldn't open his eye. It was very strange. Then, after about 4 minutes, it passed after I convinced him that I was not staring at his eye. Could this be the "die off" that people talk about? That is when my dh said, maybe we should take him off the medication! Anyways...the rest of the day was great! He didn't freak out about stuff. I took him to the pediatrician on day 12, I believe it was, to demonstrate to her how much he had changed. He wasn't afraid of elevators, he didn't have those shoulder shrug tics, although he was still doing the huh sound with his mouth closed every so often. He even looked healthier. Another interesting thing happened after two 5 day courses of taking the azithromycin: my ds7 no longer had chest pains on his right side that he has been complaining about for the past 3 months, and no longer had this lingering cough that has had for the past 2 years it seems. He had been diagnosed pneumonia two times in his life when he was much younger, but only after x-rays confirmed the pnemonia. Both times, his pediatrician said that he seemed fine, but ordered a chest x-ray, and it was confirmed that he had pneumonia. (This pediatrician used to take x-rays for everything before, so much so, that I was concerned about the number of x-rays he had taken by the time he was 3 years old.) Anyways, I often asked her about his lingering nasal congestion and cough, and she dismissed it as allergies. I have posted before about this pediatrician and her views on sinus issues in children. I had often asked her whether or not he could have had sinus problems, because I was having them, and each time, she said that it wasn't possible because children's sinuses are too small. Well...anyways...so he no longer had this lingering cough and the recent chest pain. She dismissed it as a possible tic, which I question considering that it suddenly stopped after the two courses of high dose azithromycin (it was dosed for strep, which is higher than for pneumonia, and then I gave him one extra week of a low dose of azithromycin which was the leftover that I had, which happened to be the dosage for eradicating pnemonia). I suspect that he had mycoplasma---walking pneumonia---for a few years. Can I confirm it, no. If I get him tested for mycoplasma after it has been eradicated, will he have titers that show up somewhere? Anyways...so just before going to the pediatrician's office, I took a stroll around the mall close to the doctors office, which is not typical for me. Out of joy for the fact that 1) I was able to get him azithromycin, and 2) that he had considerably improved, I decided to give in, and buy one of those gumballs that come out of the machines. Unbelievable...he started the shoulder shrugging. Mind you, it wasn't as constant as before, but it was there. When the sudden thing happened, it was every 6 seconds. After the gumball incident, it was 1 per minute. Well...the pediatrician said that she still didn't believe in pandas, explaining that in her hospital they don't see any pandas cases. I suggested that the doctors need to ask the right questions, such as inquiring about illnesses prior to such episodes, particularly sore throats. She dismissed it by saying that sore throats are a childhood norm. She added that my ds7 still had shoulder shrugs, albeit considerably lessened, thus, she would not prescribe another course of azithromycin. She added that she had never given kids more than two courses of it (10 days). I made the mistake of telling her that I was able to get an additional week's worth from a walk in clinic doctor, but I didn't explain what I told the doctor to be able to get the additional weeks worth of it. Oh well...that was it. She would not prescribe it again. She was very clear that pandas is controversial. She put him on a referral list to see a doctor at Sick Kids Hospital in the Movement Disorders clinic. We still have not received info about when this will take place, likely in a few months. His pediatrician said that she did not want me to be my ds7 physician. So, that is it. Dr. K wrote to me requesting for the blood work. I will fax over the blood work to him. Will he be able to work with me while I am in Canada, and he is in the US? My ds7 is back to many of the behaviours that he presented with or was experiencing before the azithromycin, although he is no longer totally freaked out about elevators. He has these shoulder shrugs that can be often and less often depending on the time of day, what he eats, whether he feels anxious or sad, whether he has a lot of sugar, and it seems that wheat and dairy are issues. He still wants me around though, and he doesn't want to go to any games without me. If you recall from my original post about my ds7, I had him overprogrammed in many programs, and I really set the bar high for him before. Now...I have been taking it easy with him. He loves soccer, so he is enrolled in a team soccer league, and also plays soccer at a field with the local kids. He wants me to be around. I asked him if he wanted me to put him into any tennis or something else this year, and he said that he didn't, and he certainly didn't want me not to be around. So, I play tennis with him, soccer at home, floor hockey at home with him, and lots of board games. Of course, I read him all those interesting mystery novels that he loves so much. I feel a little helpless. I was feeling really hopeful at one point. I loved that when he was sick, some of you wrote back to explain that they regress a bit when that happens, so it allowed me to understand what was going on. I appreciate all of the feedback and knowledge that I have gotten from this forum. I have been reading a bit, and noticed that the doctor who co-wrote the book with Jenny McCathy talks a bit about pandas. He said that he believes that kids should be on anti-fungals at the same time. Thoughts on this? Are your children on anti-fungals? What do you all suggest that I do? Yes, I was creative in getting him azithromycin one time from a doctor in a walk in clinic. I might be able to keep it up using a different strategy with a different doctor. I would, however, prefer to have the support of a doctor who knows more about medicine than I do. I feel like one of the parents from Lorenzo's Oil, trying to learn everything I can about this stuff. Thanks for letting me vent. Any suggestions are appreciated. Plus...my ds7 also moved around a lot more in his sleep while on azithromycin. I don't know if this is common for other children. I also found him to be a lot more active then usual, and wondered about it being a side effect of azithromycin. It was listed as a side effect on some web site. DS7 does not have ADHD, so the burst of energy was interesting, particularly at night with all of his thrashing around the bed. Has anyone's child also done this thrashing around in bed thing while on azith? I am editing this post because when I originally wrote it, my dh wanted me to get our ds7 ready for bed after his late soccer game, and wanted me off the computer...like now... Hmmmm...nobody's life is perfect. I have been reading a lot of stuff which I will eventually post on this site when I figure out how to do it. It sounds like some doctors are trying to make the links to figure it all out, and other doctors are disputing the whole pandas idea based on clinical trials which do not take into account the parent(s)' lived experience with this whole thing. The perspective of a child's parents are critical, because they have witnessed changes in their child(ren) during or immediately following an illness. Such informatio is relevant. Yet some researchers and doctors fail to address this qualitative piece, citing only studies that compared children with strep with matched controls. They fail to see that not all children who develop strep end up presenting with these sudden changes. Plus, they take Swedo's criteria for pandas, and note that children have to present with ALL of the symptoms that she lists. That is also problematic. We know that even in medicine, a child can have something like pneumonia without the fever, although fever that will not go down is one symptom, plus pain in the chest or abdominal area. Similarly, not all children who had strep and suddenly present with "different" behaviours, will present with every single behavioural characteristic listed by Swedo. I believe that her work was a work in progress that needs some fine tuning to explain that children do not need to present with all of the symptoms in order to have pandas. Researchers (doctors) who are critiquing pandas appear to go down a check list and then dismiss the notion of pandas when children don't present with all of the symptoms, it seems. Furthermore, I notice that some researchers who question the existence of pandas cite the fact that children in the US community setting did not test positively for strep. We know that children could have had a prior infection, and then months later or years later the parents make the connection re: strep and the behaviour. Or perhaps parents made the connection right away, which is what I believe, but doctors never proposed pandas as a possibility to the parents, because some doctors don't believe it exists. Anyways...that's all. Just some thoughts on the subject. I pray that all of our children are healed. I want to see pandas prevented, and the only way to prevent it, is to ensure that doctors are vigilant about strep tests, and they believe that pandas is real.

Lynne, my son was doing fine, and then he had two gumballs, and then the tics came back immediately, although not as strong. When someone gave my son a McFlurry with smarties, it happened. Some mom brought donuts to soccer, and it happened. I haven't figured out what causes it, but it is something.

Wow Chemar...thanks so much for the link to all of these fantastic resources. I especially love the one that deals with the school environment, toxicity and students/teachers.

Thank you everyone for your input. I gave him an advil in liquid form (dye free) on Thursday, and one a few days before. Perhpas that in conjuntion with the azithromycin caused it.

Hey Peglem, thanks for the note. I especially loved your last bit about being called re: Munchausen's. I got a chuckle out of that one. I think that the parents on this site are intense, that is, we really want to get to the bottom of things. Interesting how some people prefer that we not be so intensely interested in pursuing whatever we can for our children's well-being.

Hi, Just wondering. Did any of your kids have greenish stools while taking azithromycin?

Hi Kara, It sounds like being involved in the cunningham study makes sense. How do I get started?

Thanks Norcalmom. I will review everything in detail.

Thanks Chemar. I will read everything in depth.

Thanks. I'll look into this to see who is known to treat this, and perhaps is more likely to be willing to look into a change in my son when he was sick with a sore throat and fever, a few months after having diagnosed and treated strep. As I mentioned in other posts, his pediatrician says that if a child has had strep, then it does not make sense to do a strep test a few months later, because they will always test positive. Then, two months after that...it just got worse, but the odd symptoms actually started while he was home sick on his 6th day. The symptoms worsened all at once two months later, with the initial ones remaining. I will also look into requesting to have my son see an immunologist.

Sneider 2005 Thanks Vickie, I checked out the thread, and there is a study by Sneider in 2005 that says: Thus, azithromycin prophylaxis should not routinely be recommended for children with post-streptococcal neuropsychiatric disorders. The results of this study suggest that penicillin prophylaxis might be considered for children who meet all criteria for membership in the PANDAS subgroup and who have ongoing risk of GAS exposure. This is interesting.

I really wish that his pediatrician had taken strep seriously. She is a very relaxed doctor who loves to spend a lot of time talking to parents and children in her office. She smiles and jokes a lot with parents and children. I know that when we first went to her, that she was just starting her practice. I, on the other hand, am not so relaxed. I know have learned a lot as a result of this episode. I am still learning. Finding another pediatrician is difficult. There aren't a lot of pediatricians around. We can go to walk-in clinics, but they don't have the same doctors there. They have retired doctors or new doctors that rotate from place to place. I can however get a second opinion. The pediatrician can send a referral to whatever doctor I want, and I can get another opinion. I can also go to the hospital urgent care clinics, where there are different doctors who attend. I have done that in the past, and they have taken strep seriously. They won't however, deal with pandas. After reflecting on our situation, I see what you two are saying. You're so right. The doctor didn't want to check for strep because she said that children will always test positive for strep two months after they had a strep infection. I just assumed this to be normal. Based on what you are all saying, this is absurd thinking. Does that mean that kids should not test positive for strep a few months after their initial infection, or does that mean that we should always treat whatever positive thing shows up?