TessaKrista

Has stopping the abx. helped at all? Just curious. No.... stopping the abx Biaxin, hasn't stopped his neck stretching tic, or his occasional throat clearing, light cough and air hunger sound. How do I get him tested for yeast in his gut and elsewhere? Would a naturopath know, or the mainstream pediatrician? He did the throat clearing thing last time when I started him on azith, and he also got a kitten for the first time, so I chalked it up to an allergic reaction to the kitten. We have kept her in the basement, and have her hang out in the backyard. Eventually his throat clearing and cough thing went away, only to return when I gave him biaxin. Plus....the neck stretching thing has suddenly started. His female friend came over on Friday June 15, and that night, her parents took her to emerg because of how she was acting with her high fever, sore throat and lethargy. Turns out she had strep. She didn't go to school for a few days. I called her family, and they told me about the strep, but really didn't understand that I was totally worried that her strep could have affected my kid in a different way. Tuesday June 20th, my ds9 got kicked in the back of his head at school playing soccer, enough to make him cry and go to the office for ice. That was 4 days after the strep girl came to our house. He was having little funny movements with his chin. On Thursday June 21, I gave him one dose of Biaxin in the evening, and then by Friday June 22, he had this crazy neck stretching thing that really freaked me out. Plus... I started noticing that he started clearing his throat that Thursday night when I gave him his first dose, and then again on Friday morning when I gave him his second dose. But, the throat clearing, light cough, air hunger thing, would last one hour after the dose, and then stop. I started to see that it wasn't the cat afterall. Someone mentioned lyme. You know, last year, he did have a big circular thing on his leg, and I remember wondering about lyme, but he had no symptoms. Is it possible that one year later, the lyme symptoms surfaced? Bear in mind, that in March, my ds9 had his second full blown pandas episode, fears, emotional lability, urinary frequency, and all. His behaviour was so different, suddenly so different, that dh finally believed in pandas as a result of that time frame. I don't know if it was the head injury, the strep, possible lyme, exposure to strep, or yeast that brought out the crazy neck stretching thing. It is noticeable enough that a kid at school asked him last week to explain why he did that, and ds told him that he likes to do it. I have been doing epsom salt baths, and adding magnesium to his food. Nothing has changed. Although, the throat clearing thing seems to be about really clearing something that is stuck in there, and it is occasional...but the neck stretching is constant. I was reading Jenny McCarthy's book with that doctor, and they talk about giving kids diflucan along with antibiotics. I don't know if that protocol is only for kids with autism which my son doesn't have, or if that is just good practice for all kids. Can I do my own lyme testing, or do I need a doctor to make it happen in Canada? Can I send something off to see if he has yeast in his poop or guts, without requiring a doctor to sign off, or do I need a pediatrician's approval in Canada? For anyone who might have done yeast testing in the U.S. or Canada, on your own, how much did it cost? What lab did you use? Re: lyme, I hear that the Canadian lyme testing isn't good, because they don't use high enough numbers to determine whether or not someone has lyme. The U.S. accepts lower numbers from the testing results to gauge whether or not someone has lyme. What labs have you used that you liked? Thanks for your replies!

Bran Buds I think the cereal is called, has a high percentage of manganese, and those extra fortified cheaper breads also have very high percentages of manganese. Like....90 percent or something like that. Therefore, when a child has that bread or that cereal for a few days in a row, or a large amount of it, they react. Now I understand why... Chemar, you said that it is neurotoxic. That makes sense. High levels of msg does the same thing. Thanks for informing us.

Yes. There are some cereals and breads that have too much manganese, and I no longer buy them, because of their high manganese content. The cereal that has the word "Buds" in it... Fiber Buds or something like that, has too much manganese. Kids twitch like crazy after eating them for a few days. Same with the cheaper breads on the market that are overly fortified, like wonderbread and those types of breads. I worry that the hamburger buns and hotdog buns made by those companies also have high manganese, even though they don't list it, because of space limitation. It makes kids tic like crazy.

I have noticed something recently. A while back in April, my son took antibiotics. Then, he started again, and the first day, he started with this throat clearing tic. It seemed odd that it happened on that day. Now, this month, I gave my son antibiotics one day, and that same day, he did this throat clearing thing, and started with a neck tic. I stopped the antibiotics. Then two weeks later I started up again with a different antibiotic in the evening, and that evening, he started clearing his throat and having this light breathing cough. The next day, he had a wild neck tic, that was worse than I have seen. This is day 4 of the antibiotic, and each time I give it to him, he does this throat thing, and light cough that has this breathing thing along with it, as if he is trying to catch his breath. This time, the cough thing and clearing lasts around one hour or two, whereas in April, it was so severe that it just kept going. So, I give it to him at 8:30 am, and he starts with the sound. I give it to him at 8:30 pm, and the sounds starts until he falls asleep. It seems too coincidental not to link the two. It sounds as if he is gasping for breath and clearing his throat. The neck tic is the worse I have ever seen it. I feel helpless, and I feel as if I have brought this on. Perhaps he has candidas. We went to a naturopath in April, and she didn't think he had a fungal infection bc his tongue was not white. The regular pediatrician said the same thing. But...the odd thing is that I have definitely made the connection between antibiotics and this throat thing and this gasping thing, and this new tic which gets worse with each day I give him antibiotics. Is it possible that it is in his gut? I am stopping the antibiotic tomorrow morning. This is just too much. Any suggestions on tests or anything else is greatly appreciated.

I have noticed something recently. A while back in April, my son took antibiotics. Then, he started again, and the first day, he started with this throat clearing tic. It seemed odd that it happened on that day. Now, this month, I gave my son antibiotics one day, and that same day, he did this throat clearing thing, and started with a neck tic. I stopped the antibiotics. Then two weeks later I started up again with a different antibiotic in the evening, and that evening, he started clearing his throat and having this light breathing cough. The next day, he had a wild neck tic, that was worse than I have seen. This is day 4 of the antibiotic, and each time I give it to him, he does this throat thing, and light cough that has this breathing thing along with it, as if he is trying to catch his breath. This time, the cough thing and clearing lasts around one hour or two, whereas in April, it was so severe that it just kept going. So, I give it to him at 8:30 am, and he starts with the sound. I give it to him at 8:30 pm, and the sounds starts until he falls asleep. It seems too coincidental not to link the two. It sounds as if he is gasping for breath and clearing his throat. The neck tic is the worse I have ever seen it. I feel helpless, and I feel as if I have brought this on. Perhaps he has candidas. We went to a naturopath in April, and she didn't think he had a fungal infection bc his tongue was not white. The regular pediatrician said the same thing. But...the odd thing is that I have definitely made the connection between antibiotics and this throat thing and this gasping thing, and this new tic which gets worse with each day I give him antibiotics. Is it possible that it is in his gut? I am stopping the antibiotic tomorrow morning. This is just too much. Any suggestions on tests or anything else is greatly appreciated.

Study by National Institutes of Health on Botox for movement disorders Recruiting participants; posted with permission http://www.clinicalt...how/NCT00001208

http://pandasparentsymposium.blogspot.ca/p/dr-jamie-candelaria-greene-phd-bcet.html

http://www.livestrong.com/article/389739-the-best-natural-antibiotic-herbs/ I found this information about natural antibiotics.

Which olive leaf brand have you found helpful? What is NAC? Are either of those recommended for children who are nine years old?

We need support from various sources. Unfortunately, sometimes our husbands or wives cannot give us everything we need from them emotionally, so we seek out other sources of social support for the issues that concern us, such as this site. This site is a source of information and support. There is a world of wisdom on this site from parents. Go over stuff with your husband, but not at length, because clearly he is not in the same place as you with respects to information seeking. That is ok. One person cannot be everything to us all of the time. That is why we have male friends, female friends, co-workers we get along with, other mother friends, friends in the family, and there are always counsellors or therapists to assist as well. One thing I have noticed about this site, is that the parents on her are very interested in helping out their children, and they are completely interested in assessing their children's needs and learning more about what to do. There is a bit of an obsessive quality to all of us, which looked at differently, is a good thing, because we perservere and figure out what is needed. Think of Beth, Sammy's mom (from Saving Sammy). She was relentless in her pursuit, and now she is committed to spreading the word and helping others. Take from you husband what he is able to offer you, and give him what he is able to take from you, while at the same time connecting with others who are like minded, and can give you what you need in terms of information and support about your child. It sounds like your husband is overwhelmed with all of this information, and processes things differently from you. You want to verbalize your feelings, and talk about the information that you have uncovered. He isn't like that, and that is ok. It just means that you will be the one figuring out how to best help your child, and along the way, you will keep him briefly posted. Surround yourself with supportive people who understand what you are going through, including this forum and other means of social support. You seem to like to immerse yourself in information, and your husband isn't like that, which is fine. Just different people who have common interests, just not with everything. All the best to you!

Your mother in law and mine sound very similar. You never know what is true and what is not. They will only tell you the truth sometimes, and stories tend to change, so you have to piece everything together. At the heart of it, perhaps your mother in law and mine are just afraid of being seen as being deficient in any way, or having kids that had problems of any kind. They want to present like things were perfect, but when you probe deeper, you realize that it just wasn't that way in the past. They don't want to be judged as being "sickly" or having "sickly" children, even though they like did have children who had illnesses and other issues. You likely caught her on a good day when she wanted to share something, and agreed with you, whereas on other days, she just denied stuff. Like I said, you have to piece things together based on info that you get, not only from her, but from your husband's siblings, grandparents, aunts, uncles, cousins etc. That's when the story always gets more interesting. You find out stuff here and there. But...the key is to not approach it as if you are trying to make the genetic link or blame someone in any way....you have to just say something like "tell me about my husband's childhood....what do you remember about him...did he use to have some funny movements or quirky things when he was small like a lot of kids do? Stuff like that. You need to normalize things. One day my mother in law will tell me I am crazy for not giving my son tylenol or advil for a low grade fever, because her daughters always gave their give medicine, and she always gave her kids fever lowering medicine. Then a few days later when I give him advil, she tells me that I am obsessed with my kid's fever, and her daughters never gave their kids advil or kept their kids home from school when they had fevers, and then she compares me to her other daughter in law, explaining that we (both daughter in laws) are both obsessed about things, but her daughters are not, because they didn't raise their kids this way. Weird really. A bit crazy making. There are many other things that she has done that have just led me to stay away for a long time and not call every day like I used to. In another post I explained that my MIL eats something with a spoon, and then spoons things with that same spoon onto other people's plates, more importantly, my son's plate, and bites into something when she is sick and then gives the half bitten into thing to my son. Big surprise that he gets sick when he goes to see my husband's family. My MIL double dips and gets mad at my son when he wont eat the double dipped thing and points out to her that people aren't supposed to do that, telling him that everyone does that. Some crazy stuff. On a good day, my MIL can be very nice, and honest about stuff, like illnesses. Other day, she is not. I don't use her as the only source of information about that kind of stuff. I ask her kids, and other family members, so that I can assess things on my own. Good luck to you!

http://www.livestrong.com/article/61582-effects-consuming-xylitol/

How much does your daughter weigh, and how long was she on the 500 mg cefzil for?

Mangos and mango sorbet seem to bring something out for sure, particularly overly ripe mangos, not so in green mangos. Not sure if its the sugar or the mango or both in the mango sorbet.

Where did you go for the lyme thing in the States? You said south of the border. Did our Canadian plan cover that? Would our work health plans cover somthing like that in the U.S.? Or...how much did it cost? Thanks

Did you have to go to U.S. labs or ones in Canada? Did he prescribe abx for your child from the U.S. or does it have to go through a Canadian doctor?

Wow...it is so great that all of these parents from Ontario Canada are finally connecting! We have not come across any pandas friendly doctors in Ontario. I am still on the hunt though. I am able to get antibiotics for my son sometimes, when he is sick. It is very difficult, because some doctors don't like to give them out, and others will consider giving them out, but at low doses. I would like to hear about the immunologist at McMaster as well. Immunologists are also allergy doctors, right? So I could request to see that person to have my son tested for allergies again, 5 years after he was initially tested. It seems like some people in Ontario are very fortunate to have a family physician who prescribes antibiotics when needed, as some of us have to go see doctors other than our child's pediatricians to get help. My son's pediatrician got a hold of a positive test for UTI that a doctor at the local walk in clinic ordered, and the pediatrician did not prescribe abx bc my son didn't have a high fever! HSC did a urine test, and it was also positive, but still not antibiotics from the pediatrician, bc ds didn't have a high fever. It didn't matter that he had a low grade fever....the ped was looking for a high fever. He said, "if he doesn't have a high fever, then it isn't a UTI." Ok...so we did another test a long time after that, in a row. One showed positive and one showed negative. Meanwhile, my son had strep at the same time that the uti issue came up, and he was around a sick grandmother who shared food out of her mouth with my son, and around a very sick child who came to our house. Thanks. Anyways... I went back to the nice doctor at the local walk in (there is only one doctor in this particular one) and told her that my son was still urinating all the time. She prescribed antibiotics, saying that if I want her opinion, you don't need to have a fever to have a uti. The nurse at the hospital also said that to me, and then she found out who my son's ped is, and what he said, and she told me that was only her opinion, and I had to go with what the doctor said. My son's ped is the head of pediatrics, and he doesn't like to give out antibiotics. So, when my son has something big, I always go to the walk in doctor who knows him well, and we also go see his ped. I am on the hunt for a family physician or a pediatrician who is willing to be open minded and see a bunch of parents and kids who are concerned about pandas symptoms. I will keep you all posted when I find that person. I have a lead on a doctor. I mention pandas to families that I work with, whenever they talk about their children presenting with sudden onset of odd behaviour. One mom told me that her daughter started saying to her that she has "bad thoughts" and she is acting really emotional lately. I asked if her daughter had strep recently, and she said no. Now I realize that parents may not even know whether or not a child can have strep, because some may be symptomatic....similar to Saving Sammy...Sammy Maloney. They didn't know that he was positive for strep. It took a year for someone to decide to do a strep test on him, and then try various antibiotics and various strengths until they found the right one for many years. Anyways...this mother told me that she ended up asking her doctor about pandas, and her doctor said that she had heard about it, but her daughter didn't seem to have it. The mom thinks the doctor is open to considering things, which is far better than many doctors I have come across. There are some people who prefer to keep the names of the doctors who help them, private. I will respect that, but would like to suggest that we pool together to find a supportive doctor in Ontario, in the GTA, who is excited about working with families whose children present with these pandas-like symptoms, and can consult with someone like Dr. T perhaps to prescribe the correct doses of antibiotics, rather than prescribe something that won't really make much of a difference. I just posted about antibiotics, and some research uncovered that you need high doses of azith to make a difference in erradicating strep, otherwise, strep will resurface. Other research looked at the efficacy of certain 10 day ones versus the 5 day ones, in terms of erradicating strep. Some research has looked at how effective abx are, by testing kids a few times after their course of abx finish, like 15 days later and 30 days later. Something like that. In order to beat this thing, we need to have someone willing to do it aggressively, like Sammy Maloney's doctor, who prescribed very high doses of amoxil clav (called augmentin in the U.S.) for a long time, not this 10 day thing. Anyways...let's get a support group for Ontario parents, and lets find supportive doctors. Let's get the word out in Ontario! Together we can do it!

http://www.tourette-gesellschaft.de/rbk2/012c_bts_%20tsandmycoplasmapneum.htm

5 day azith vs 10 day pen v – strep comes back after 30 days http://jac.oxfordjournals.org/content/31/suppl_E/89.abstract?ijkey=bccad51b41957894bc4177d246cac738bbfd077a&keytype2=tf_ipsecsha 10 days clarithromycin better than 5 days azith – strep comes back http://cid.oxfordjournals.org/content/32/12/1798.full Azith – best at 60 mg/kg (given as 20 mg/kg for 3 days or 12 mg/kg /day for 5 days) in the pediatric trials http://cid.oxfordjournals.org/content/40/12/1748.full

1/2 subtites in other lang video 2/2 This is Beth Maloney's story in English, with subtitles in a different language. It has two parts, and is considerably longer than the other versions of their PANDAS journey. Other clips are approx 2-3 min long. I will figure out some way to show a doctor this info.

Try having her use baking soda and water to brush her teeth. Put lots of baking soda on the wet toothbrush, and scrub. Use it for a few days in a row. I find that it really helps with stains, like blueberry, mango etc. Ds uses it.

Wow! That is so wrong! What is the world coming to? Forced HPV vacines? Some pharmaceutical company must have sponsored big time at some politician's campaign. Why California I wonder?

A pediatrician we saw once at the hospital told me that antihistimines and decongestants bring out tics in kids who are predisposed to getting tics, so parents have to weigh out the good and the bad, and decide how serious the child's situation is, and then go from there. The floride from the dental hygenist can also bring out tics. It sounds like there are some natural antihistimes, from what someone posted. Interesting.

Yes..."tic disorder associated with strep" is what two Canadian neurologists from 2 different hosptials wrote down on the sheet they sent to his pediatrician. They both said that his symptoms were consistent with pandas. I don't remember if they both wrote that down though. Will have to check the next time I go in to see the pediatrician. So, they both agreed that it fit a pandas diagnosis 2 years ago when my son, then 7, experienced his first pandas episode, which was mild compared to this time, two years later, at age 9. We need to remember that some doctors are not ready to be progressive and make the links between strep and pandas though, even though it is well known that infections cause illnesses including mental illness, for example, syphylus (sp?) caused some kind of mental illness years ago and penicillin was the cure, sydenham's chorea is brought on by strep and long term prophylactic antibiotics are the treatment, strep causes rheumatic fever and antibiotics are the treatment, tick bites can cause lyme disease which is treated with antibiotics.... I am sure that there are more well researched connections out there in addition to the ones I mentioned. There are some doctors/psychiatrists who are linking infection with ocd...which is connected to PANS really. Also...a bunch of "good doctors" went out to meet with the 12 girls in LeRoy who had a bunch of movement issues and vocal issues in addition to other symptoms like anxiety, and they decided to call it "conversion disorder" until the great neurologist, Dr. Trifiletti, took a trip down to LeRoy to help out these girls, tested them all for various things, and discovered the link between strep, mycoplasma and their behaviour. He told people that they had PANDAS. Parents and kids were relieved that this bright doctor took the time to question this silly "conversion disorder" by doing further testing to rule out everything, and finally helped these girls. Dr. Bouboulis was also helping out some girls there. It is great doctors who don't just follow the crowd like sheep because it is easier to be a sheep than to be a researcher and dig deep and find the underlying reason for things and come up with a cure. If it wasn't for great creative minds and hard/dedicated people throughout history, where would we be? So...Dr. Sweedo got the ball rolling, and Dr. Trifilletti finally put PANDAS on the map, as did Sammy's mother...in addition to many other people who are dedicated to spread the word. Some doctors have seen first hand the detrimental effects of strep on a child, including two well publicized people: Sammy (from Saving Sammy) and Jamie (Jamie's story). It seems really absurd that so many doctors don't know anything about PANDAS, which will now be called PANS. It seems even more absurd that some have heard of it, and are afraid to do anything. Probably because they need some kind of exact science telling them what to do, or perhaps they are afraid of law suits. I don't know. However, there are many great doctors who do know about PANDAS/PANS and help out kids daily. There are also other great doctors who are willing to learn more about it, and want to help kids get better. I believe that these type of doctors got into the medical profession for the right reason: to make a difference in people's lives, to help save lives, to improve the quality of people's lives, and to try to come up with some kind of treatment or cures to help people.