TessaKrista

I'm just putting this out to everyone. Some of you already know the majority of my story that I posted a few days ago entitled something like : azithromycin pandas and my personal story. Anyways... I was reviewing the videos that I took of my son before and during his sudden symptoms, and I noticed that he was sick with a fever and sore throat, and then I sent him to school for one day because his fever had gone, but not the red sore throat. Then I kept him home again, and he had the sore throat and a constant cough that brought up greenish phelegm. The sore throat persisted. Then he started with the grimacing and the head turning. Then a few days later he had a fever again, and he vomited, all the while still having a sore throat. He had no energy. Then he had no fever but the sore throat persisted. What I noticed from the video that I had forgotten was that he had a rash on his chin, which is odd for him. He also had a rash on the inner parts of his arms, and his back. He was always itchy. Oh yes, his head was itchy, and it was just an overproduction of those crusty things on his scalp. He complained that the right side of his chest hurt, but the doctor said that he was fine. In the past, he complained that he his chest hurt and after an x-ray they discovered pneumonia. Perhaps he had pneumonia, perhaps he has some sort of other thing. The chest pain persisted. He described it as pressure on his chest. He had an ongoing cough for 4 months. Plus...his nose was stuffy, and his inner were often itchy. Plus...he told me that his bones were hurting, his right femur was hurting to the point where he couldn't really cross his legs, he had little red spots under his skin ---which I worried about ---and this bump under his skin that was like a ganglion cyst or somthing, on the lower part of his leg right by his bone. I chalked up some of the symptoms to the flu, but it appears that rheumatic fever presents with similar things. I don't know. The round soft thing by the lower bone of his leg went away when we went to see his doctor. We just couldn't find it that day. Interesting. So...is there some sort of connection between pandas an rheumatic fever? Did any of your children also present with any of the above mentioned symptoms? As I mentioned to one of the moms in this site, my son had gone on a bumper car just before he started sk (mistake) and when he got off the ride with me, he told me that the back of his neck hurt. The big bump on the back of his neck hurt forever it seemed. A few days after that, he shrugged his shoulder for a few days and it went away. So, this time, when he was 6 just turning 7, when he did the grimacing, rolling eyes at bedtime, head turning when stressed, and then eventually shrugging his shoulders for 2 months now, it seemed different somehow. I do believe that he is predisposed to tics or something, as I believe that all children who present with tics are somehow either environmentally or genetically predisposed, and something brings them out. The other symptoms that he started doing along with all of this sudden different stuff was touching one ear and then the other, or flicking them one after the other, which is different for him, and he started to become even more sensitive. The day that we went to the pediatrician, he was afraid to take the elevator. I was surprised. He also did not want me to leave him when he did his many programs....which he now doesn't do because I overprogrammed this little boy. He is just in the soccer league, because he totally loves it. I'll focus on things that he loves. He asked me if he should join the chess club at school, and I told him that it is up to him. It is his decision. Back in sk I joined him up at his school, and he was in it in grade 1. I told him that in grade 2, he decides what feels right for him. He said that he likes chess, but doesn't like to miss the long luch recess when the chess club is offered one time per week. He has decided that he will join if his good friends join too. Last year most of his friends dropped the chess club to go play outside. Anyways... I just got side tracked. So....what are your thoughts about the connection between pandas and rheumatic fever? What if there is a family history of some immune issues. Should we not consider that as part of the diagnosis too? My mother and husband have sarcoidosis, and were both diagnosed in 1990. My brother has some over production of the skin on his scalp, face and ears, and uses topical steroids to minimize the overproduction. He said that his immune system is on high. My husband's brother has psoriasis (sp?). Two of my sister in laws had bells palsy. My little boy has had croup a few times, pneumonia a few times, one ear infection, treated strep throat, and many colds with fevers and sore throats. Just wondering about your thoughts.

Norcalm, I can relate to your post. I wondered whether we should do the private school thing in JK, and then just went with the local school. I didn't understand why this teacher wasn't pushing the kids like the private school kids were being pushed, so I enrolled him in Oxford Learning centre, so that he would be on par with other kids outside of the school. My sister in law who has grown children laughed and told me to take it easy. She is the school social worker at my son's school, and said that the teacher is nice and the school is very nice, and to relax. It is easier to say that after having grown kids. We learn through experience for sure. We can now turn around and warn others, but will they be apt to heed our warnings? You seemed to be ahead of the game, listening to your friend who was an experienced mother. Typically we need to go through the experience in order to understand what other people meant by it all. No...the breast feeding thing with your son didn't do it for sure. I breast fed him until he weaned, at 2 or something like that. He had his immunity for sure, and he would still get sick with pneumonia, and croup, and has allergies to dust mites and mold. We do what we believe is best for our children given what where we are at in our lives, and given what our bodies can do. My body can no longer run around doing all of the things that it did with him. I don't want to. I want a healthy boy.

Hi Kimballot! Once again, thanks for the post. I am still searching for a pandas friendly doctor in Canada, preferably somewhere close to Toronto. Still...searching...

Couldn't children just go on an anti-inflamatory drug to help with the inflamation? There has got to be a reason why this solution isn't proposed as the only solution. Why is that do you think?

Can any pediatrician order the cunningham test?

I have already started videotaping the different behaviours, which wasn't much of a switch in our family, because I am always videotaping. What I did differently though, was that one day, I told my son that I would come back to videotape, and I left it running all set up on him, without him knowing. That way, I saw what he does when he doesn't realize that he is being watched. He was sitting on the bed, and for about half an hour, I let the thing run. One time during our bedtime routine, I did the same, and strategically pointed the camera at him. I told him that it wasn't working and that I was re-charging it, so that he didn't think that he was being videotaped. I also videotape him while he is playing with friends, and I notice that he does not try to modify his behaviour then, because he is having fun at our house during play dates. Thanks for the great suggestion.

DataGirl...no I am not offended. We all do the best we can, given our situations and what we believe is the best at the time. You are doing wonders with your family. Juggling things is challenging. Keep up the great work.

It is ultimately your call. I am fearful of kids who are sick, because I don't want my son to get sick, which it appears that he has gotten sick because of their presence. Parents often don't even tell us when their children are sick. It was nice that they told you. You will have to decide whether or not the contact with the family will be close enough that it will jeapardize your son's well-being. Can you send a message to the doctor who did the work with your son, and get his/her opinion? Maybe you can check in with Dr. K via e-mail, and see what he has to say. I would want to stay home out of fear. I would research it first to find out about the risk to your son and your family, and determine whether or not the risk outweighs the benefit. How will your son or your family react if you do not go? Will they understand how important prevention is to your family? Is everyone on board? Some things to consider...but before you do, ensure that you have consulted with the professionals who deal with pandas. That would be my number one suggestion, and then you ultimately decide from there. It is your child's health and your family's well-being. All the best!

Today is Friday. My son has a fever today of 39 celcius, felt tired, didn't want to eat, had the sniffles all night, and said that his tummy hurt. After his bowel movement, he said that he felt better. I guess that he has caught something. He was up and down at night because of his sniffles. He woke up today just after 9 a.m., went to the dentist, and arrived home just after 10, took an epsom salt bath, and went to sleep. This is not common for him. do you think he's just sick? Of course I start to worry that the azithromycin could have affected him, but there have been two sick children around him in the past few days. I will get the Advil or Motrim, which will help with the fever and with any inflamation in general. One of the moms suggested Advil/Motrim as an adjunct to azithromycin in general. Good idea. Thanks for your outpouring of support, questions, answers, suggestions, and links. What a great forum with great parents on it.

I don't know if you live in the U.S. or Canada. I am wondering about the immunologist. Did you ask your pediatrician to refer you to an immunologist, or did the pediatrician see something in the bloodwork that he/she believed would best be treated by an immunoloigst, or did you see a pandas doctor that referred you to the immunologist? In Canada, we need to get a referral to a specialist before moving on to see that specialist. We don't pay for any specialists, but we often have to wait to see them, and some doctors don't like to refer to specialists unless they have some kind of paper work or symptoms that they believe warrant specialist intervention. I really like the idea of seeing an immunologist. My son went to the Hosptial for Sick Children (HSC) last year because we weren't sure if he had an allergy to penicillin. He had a very itchy rash when he took Novo Amoxil and Biaxin. They said Biaxin was a different family. Well...at the HSC he went to a clinic that had immunologists and allergists. I wonder, are they all connected somehow?

He weighs 52 pounds or 25 kilograms. How did you figure that out? Yes, 200mg/5ml dry form, and 7.5 ml/day.

Thanks kimballot for the post. You said that it is a good idea to keep a chart/notes on the behaviours that I see and scale them. Thanks for the suggestion. Do you find that helpful for your own notes and for the doctor? Do you mean, we include when our children's behaviour improves during what activities and when they get worse with other activities and food products that they eat? Will doctors respond to this information, or is it more useful for us to keep track of for our own benefit? I don't have a pandas doctor here, but I did send Dr. K an e-mail and he asked me to send him the blood work. My 7 year old son's pediatrician initially did blood work when I told her that he was going through something and I wondered whether it could be pandas. She said that pandas is a fad, and it is controversial. I will get a copy of the blood work and learn all about the different types of results and blood work-ups that exist. I know that she said that his blood work showed that he was eating healthy, and that his titers were high, but he tested negative for strep. This was a few months after his illness. I don't know what type of blood test she ran, but I will find out next week. Dr. K was very specific about what he needed. Since I live in Canada, it looks like I will have to go visit him or consult with him in some other way.

DC Mom, thanks for your note. Although pushing our children doesn't cause pandas, I suspect that some children are more likely to get pandas than others for whatever reason, likely some genetic or environmental thing that predisposes them initially, and if we add stress which can cause some level of anxiety for them, and lack of sleep to the equation, then it could just be the thing that pushes them over. I don't know. I see what you are saying though, looking at your two daughters, who both got it, and only one was really challenged because you knew that she thrived on it. My son also thrived on the attention, but the energy that it took to get them to the performance state, was obviously a lot. I am still trying to understand it all, as I am sure everyone on this board is as well. Even the doctors are trying to sort things out. I wonder if this thing could be prevented. I mean, when kids get sick, perhaps we should revert to the protocol from the olden days, which is to give antibiotics...just in case. Yes, there are problems with antibiotics. I know. I think that we need to warn people about the severity of strep. My son's teacher told me that another teacher died from flesh eating disease which is somehow connected to her having strep. My sister in law told me that all of my son's older cousins had issues with their throats, and one cousin continually went on antibiotics for 6 months at a time because he was always sick. Then he finally got his tonsils out, and things were good. She also told me that her friend's daughter got these odd movements after a strep infection when she was quite young (don't know the age), was treated with some kind of penicillin on a maintenance dose for one year, and many many years later (she's now 19) is doing fine. You said that your daughter got sick with pandas and her whole world changed, and your priorities changed. I am hearing that a lot from others. You new priorities sound like my new priorities: happiness, eating, sleeping, etc. All of the old things also don't matter to me. You said that it is not forever. What do you mean? It doesn't seem that it resolves itself for all children, but for some. You said that your daughter is now doing really well. Do you mean that she is back to the way she was, or that she has improved considerably? What protocol did you follow? What seemed to help? How long did you see any changes after starting her treatment? You are a real super mom. You had two children go through this around the same time. It sounds like you feel so much stronger, wiser and calmer after this whole incident. I am still in anxious and depressed mode, but less so than before. I am moving into action mode. Thank you so much for writing.

When did you notice that your 11 year old son was improving? What did improving look like? What did you see differently? Sorry if I already asked you. I have been trying to navigate my way around this forum at different times, and am not always sure who I already sent a message.

Thanks to everyone who wrote. I am now wondering about the possible side effects of azithromycin and I am wondering if everyone takes probiotics with the azithromycin. I was reading about the possible side effects on the following sites including clostridium difficile-associated diarrhea: http://www.ncbi.nlm.nih.gov/pubmed/7594392 http://www.healthgrades.com/drug-ratings/d...rogen%20citrate My 7 year old has been taking the azithromycin for 7 days now, and is complaining that he feels tired, has a huge headache and tummy ache. He hadn't had a bowel movement in a few days, and finally had one today. Any thoughts? When are the side effects serious enough to warrant going to the hospital? Azithromycin side effects...when are they serious?

Yes, that person you know is wise. I am also an accomplished and muti-degreed professional. I have learned to take it easy....I am learning to take it easy. I am learning how to enjoy relaxing with my child, instead of running around driving him to various places. I have learned to love all mothers and not judge, because we are all at different places in our lives, have gone through different experiences, and do what is best. Through this experience, I now view mothers with children with disabilities with the deepest deepest love. I love all children. I want what is best for all children. I want parents to be happy. I had my child when I was 36 years old. While I was pregnant, I could not see myself being at home for the one year maternity leave that we get here in Canada. But...when my baby was born...oh my...did I ever fall in love with motherhood! I fell in love with motherhood so much, that I stayed home with him during his formative years. I thoroughly enjoyed being what they call a "work at home mom" (WAHM). I would teach a few college courses here and there, but only the ones that were offered in the evening (3 hours per week), and then as he got older in kindergarten, I taught 2 courses during the day, (6 hours per week), while my husband---who is also a professor--- was with our son. I put a lot of energy into this little boy, as I am sure all of the people who post here have done. I have totally enjoyed being a mother to this little boy. I put even more energy into my son than I did into my career and education, which believe me, was a lot. I only have one child. That's it. I believe that we all do what we believe is best, and then we learn over time what is the best for our child(ren). I want my son to be happy. I want all children to be happy. I want parents of all children to feel proud, not sad. I wish that all children could be healed. I really really do. You said that you "think that we need to be VERY careful with our kids - esspecially the pandas kids - anxiety goes hand in hand with depression." Do you mean that this is a life-long thing that needs to be constantly watched/monitored? Yes...I need to remove stress from my child's life. I don't want him to be anxious. Thanks for writing.

Thanks for the website. I might have come across it, and I might not have. I don't really know. I have searched and searched so many things, that I am now trying to sort it all out. I appreciate your input. You said that IF it is PANDAS then it will respond to treatment. When should we see changes? What is the typical time frame when changes occur? Do parents typically see a transformation after the first 5 days, two courses of the azithromycin, while the child is on the maintenance dose? One parent said that she saw a change after 15 days, another wrote in that she saw a change after 11 days. Is that the norm, or does it vary? When do we pursue a different penicillin/anitbiotic?

Thanks Tired Mom... It is hard not to be harsh on myself. Like all parents who care for their children, we only want what is best for my child. Sometimes we make mistakes, thinking that we are doing the right thing. I am hoping that I am doing the right thing with the azithromycin. I don't know when we are really supposed to notice huge changes. Thanks for the prayers...

Thanks for writing back. I am also surprised at how much I pushed my seven year old son to achieve. I will now be more relaxed about things. My standards differ now. The school put on a play recently, and the principal was expecting him to play a significant part in the play since he had won first place when he competed against older kids in speech contests, and had been the first in grade one in several things. Well...my perspective now is that my son does not need the extra stress. When I told him about the play, I asked him if he wanted to memorize the lines for the audiiton. He only wanted to do the first line. So, that was it. He did end up getting a part in the play, but a small one where a number of children performed together as a group. Although I knew that in the past I would have wanted him to have done one of the main parts, I now really want him to be normal and not stressed out. He was happy that he was performing a little part with his friends, and he was designated the lead person in that group part, which made him happy. He likes to perform, but I can see that all of the prep work can be quite stressful. I watched the school play, and he was certainly a dynamic kid among his peer group, doing all of these actions while singing. Sadly, I saw that my son was trying to conceal the fact that he likes to shrug his shoulders. That made me sad. He would look at the stage in order to get that shrug in here and there. I believe that he is aware that other people notice it. Like I said, I just want my normal child again. No, I will not put him into many things. I will do those things with him, and enjoy spending time with him 1:1. We did a lot of that before, but I also added the extra programs. I guess that I need to have a new friendship group too, who also is more relaxed. You said that your doctor prescribed 2 full weeks of azithromycin and then weekly for 3 months. I take it that the weekly dose for three months was considerably reduced. Is that correct? When did you notice changes? How long did it take? What kinds of changes did you notice? I didn't know about the ph level affects the performance of the antibiotic. How do we check their ph levels? Wishing your 7 year old all the best too!

Hi, Thanks for writing. Did your 11 year old son who weighs 95 lbs start off on 500 azith for 1 day for two weeks, and then did the prophylactic/maintenance dose daily thereafter? How long has he been on the maintenance dose? When did you start to see changes? What types of changes did you see? What type of things was he initially presenting with that led you to explore help for him? I live in Canada, and just consulted with Dr. K on e-mail. He wants to see my son's blood work. Initially no pediatrician would give me any penicillan. I don't know if his ped will continue when I see her on Monday. We shall see.

Hi, Thanks for responding. Is your daughter on that liquid type of azithromycin or pills? You said that she is on 250 mg/day. My son is on the liquid azithromycin that is initially in powder form and then the pharmacy adds water to it in order to change its consistency to a liquid form. The box states that there are 200 mg/5 ml. He is on 7.5 ml. Does anyone know if that is about the same amount? You said that the ocd symptoms subsided. When did you start seeing results with the tics? What type of results did you see re: tics? How long after taking a regular dose did you see results with respect to tics as well, or did your daughter not present with tics? How long after starting the azithromycin did you switch to the maintenance dose?

Hi, By maintenance dose, you mean he is on it every day? When did you notice that the azithromycin helped your son get better? How long did it take? What signs did you see?

Hi, I have been sending messages to some of you out there. Thank you for responding. I have a 7 year old son who had strep many months ago and it got treated with amoxil, and then he had a fever and sore throat 2 few months later, and not realizing how serious strep can be, I didn't go to the doctor, and treated his sore throat myself with warm baths and garlic. Mistake. Actually, his pediatrician told me that he would show positive for strep no matter what, because he had it recently, so it didn't make sense to try to treat it. She told me to look out for red spots. I honestly didn't really know what that was supposed to look like, since I had just gotten used to looking for the white spots as a sign for strep. Well, that whole time just before he got sick was a very stressful time for him. I had put a lot of pressure on him to do a lot of stuff. It is just that a lot of things seemed to have come with that time, such as piano composition, piano recital, speech contest, many difficult liturgy readings in front of the school, spelling tests, and pressuring him to go as far as he could with reading so that he could move to the highest level possible. Now looking back, I feel so sad that I expected so much from him. He was also involved in so many extra curricular activities that demanded a lot of his time, and demanded that he practiced a lot and performed in front of audiences. Plus...he had been going to bed late, so his immune system was down for sure. I have all of this on video tape. I have him doing his speech, his drama and choir performances, his piano performances, his chess competition, and most of all.. all of the practicng that we did at home for his readings that would be done in front of the school. He would often tell me to stop making him practice, but I wanted him to do it all perfectly. It is so sad for me to think about the pressure that I put him through to do his best at the time. Well...he got sick, and then he started turning his head to one side. It was just so odd. He was on top of the world, winning awards and all that stuff, and then...suddenly, he turned his head. I noticed that he would do it when he felt stressed. Well...believe it or not, he just kept getting sick, and I kept requesting homework to do with him at school. He should just have been resting. I would send him to school even though he wasn't 100% because he would have a spelling test or because he had to do a demanding/hard reading passage in front of the school. I should not have done that. So, of course, he would be sick again, and stay home again. This went on the whole month. The turning of the head would only happen when he was reading, or studying for spelling. Plus, I also noticed that he was grimacing his face and moving his eyes up in the air at night when I read to him from the mystery book series that he used to love so much. I totally noticed a difference because he used to be so excited about putting together the clues, and figuring out who did it etc. Then..with his change, he started moving his mouth, rolling his eyes, and turning his head whenever some part was remotely scary when I was reading to him just before bedtime. Whenever I asked him to read a line or two, he would do all this even more! My child had totally changed. Then just under two months later...his whole world changed. He was shrugging his shoulder every 6 seconds, turning his head, touching one ear and then the other, and still doing those things at night in bed when I read to him. The shoulder shrugging was very obvious. The turning of the head was really obvious one day when we went to see a live play, and that's all he did the whole time. My heart sank.... I was devastated. I went to see his pediatrician after 30 days of this intense behaviour, mostly because she was on vacation. My son was suddenly afraid to go on the elevator that took us up to her office. This was different. He also did not want me to leave from his programs, like..he wanted me to be outside waiting for him, which I always do. However, suddenly he wanted to make sure that I would not leave. Different. This I didn't mind. The shrugging, the huhhh sounds that he makes with his mouth closed, the turning of the head, the mouth grimacing, the eyes rolling up, all that... I mind. I want my child back! I want every child to be OK! I only wish good things on every child. I have been in a nightmare for a while now. I feel so lost. My friends don't really understand what I am going through, probably because all of my mommy friends also put a lot of pressure on their high achieving kids, so they just didn't believe what I was telling them. I suddenly felt embarrassed. I cried every day. I couldn't function to the point where my husband actually said "where is my wife" and I told him that I was totally depressed over what has happened to our normal child. He said that we just had to accept him and let it go. Maybe I was devestated because I kept reading up about things, and felt frightened about it all. Maybe I am just closer or more connected to my son, and feel the impact more. Maybe I am extra sensitive. Maybe I feel devestated because I only have one child and cannot have any more. Maybe I feel guilty. I just kept wishing that I could go back in time. I just wanted God to wake me up from this horrible nightmare. One thing for sure...I have become more humble. I now see mothers, and I see the world differently. I used to want my child to do the best, and know a lot, so of course, I hooked up with mothers who also felt the same, or had the same philosphy. So...bottom line, we over-programmed our kids. I have friends who made even more demands on their children than I did on my son believe it or not, by forcing them to do competitive stuff. Anyways... So when I see children who have some kind of disability, I now cry inside for the children and for the mothers. I say a prayer for each child, hoping that they get better. I am crying as I am writing this. Anyways...So I read the many posts about pandas, and it appears that I missed the boat really. It seems that we are supposed to put our kids on antibiotics within the first month of them getting all of these things related to pandas. It seems that azithromycin, augmentin, and amoxicillan are popular ones given. I had a hard time trying to get azithromycin for my child....a really really really hard time. Unbelievable. I finally FINALLY got his doctor to write a script for 5 days of azithromycin at 7.5 mg. My son weighs approximately 50 pounds. After looking at the board, it looks like the kids are supposed to be on azithromycin for many days, not just 5. One mom said that she saw changes in her son after 15 days. I am not sure if they stay on the same dose for many weeks, or if after the first 5 days they go on the prophelactic (sp?) dose after that. That is question number one. I was able to get another doctor to prescribe another 5 days of the same stuff at the same dosage. I am wondering if this is how it all works? Do they stay on the same dosage for one month or so, or do they only do a higher dose the first 5 days, and then receive a prophelactic or reduced dose after that? Please help.... I will be in contact with the Dr. K from the States about pandas, but until then, I am hoping for some direction here. Dr. K has requested blood test results. My child's pediatrican is away. This is a holiday in Canada, and she will not be around until Monday. Today is Thursday. She gave him 5 days on Friday until Tuesday. I had some left over so I gave him the same dose on Wed. I got a script for another 5 days, so Wed to Sunday, until he sees his pediatrician on Monday. Any direction on how this works and what I should ask of his pediatrician would be really helpful/ I prayed and pray every day.

My son started azithromycin, and just ended the 5 day course. He is 7 years old, and weighs 50 pounds, or 25 kg... or something like that. He was given 7.5 (is it mg?), or almost 1 1/2 tsp of azithromycin. I haven't noticed a difference with the tics, but I have noticed that he's not doing the touching thing from one ear to the other, which seemed very ocd like. What do you recommend? I am also putting this question out to Deby and anyone else. It was really really really hard to get the pediatrician to prescribe the azithromycin for the 5 days. I was thinking of going back and asking for another 5 day course, and hoping that she considers it. Did your daughter stay on it with the 5 days on, and then waited 2 more days until she started the 5 day thing again? Is that how it works? Is she on the full dose now after 6 weeks, or did the doctor lessen/decrease the dose slowly, or what was the formula? EAmom, when you say "she is 80-90% better", do you still continue to give her antibiotics? I am in that state right now, my son is also ~80 better, and I'm not sure if I should continue or start giving him the prophylactic dose (twice a week). For how long we need to continue giving them the abs? In one hand i don't want to stop in the other, I know that giving abs for so long it is not a good thing.

I just want to clarify... So, your son took 10 days of augmentin and you didn't see improvement? Then, he did the 5 day course of azithromycin, and this would be his 4th round (20 days), and you saw improvement after his 3rd round, which was 15 days of azithromycin? [My son took 10 days of Augmentin and now he is on his 20th day of azithromycin, we started seeing improvement after 15 days.