Cristo

Here is a study on the importance of adding b6 and magnesium to the diet as a means of reducing tics http://www.trialsjournal.com/content/10/1/16 Since Nestle has changed their breakdown of vitamins, I have noticed that my son has this nose twitch, and is humming more. Pretty scary. I was able to find some oat cereal that had their original formula that had vitamin b6 in it, and have been using that. The original rice cereal for babies was perfect. It had the right breakdown of vitamins and minerals in it...so much so that my son was doing so well! Now that Gerber is the company that is in charge, they want their name on the Nestle baby cereals, and they have changed the formula breakdown of the vitamins and minerals, taking away vitamin b6. I have given my son the Arthur's mango smoothie, because it seems to have a lot of b6 in it. Should I just supplement with a separate b6 and see how that goes? It really frustrates me that the company isn't willing to go with their original breakdown, which had only the Nestle name on it. I contacted them a few times, but they said that they were only going with their original breakdown. I feel so sad about this, because it totally worked for my son.

Here is a link about vitamin b6 and magnesium as being important for tics http://www.trialsjournal.com/content/10/1/16

Hi Buster, I don't know how much help I can be, but here are some suggestions inside and out of the school setting. I take it that you have explored getting external help from a private occupational therapist (OT) who can help with fine motor skills, that will inevitably help with printing and writing. Often children find cursive writing easier than printing. The key to learning printing skills is to be able to have good fine motor skills, which can be learned through a number of activities that and OT can do with each chid, gearing their program to best meet each person's specific needs. Then, the OT can help teach the child how to form each letter properly. That is another important part. Children often learn to form their letters a certain way, and then carry on doing it incorrectly, which will only slow things down for them. So...perhaps you can request on the IEP that someone at school who is experienced at his, can help her work on her fine motor skills, specifically letter formation, and if you can, find an experienced OT who can work with your daughter outside the school as well. There are many exercises that can strengthen her fine motor skills. You didn't mention her gross motor skills, but alluded to the fact that pandas hit her at a time when these skills were forming. An OT can also help with gross motor skills. I don't know what you have in terms of OTs where you live. Some of them do sensory stuff as well. In Canada, we have them in hospitals and we have private ones as well. Some also consult with schools, which means that they don't do the actual work, but help the schools form plans for their students. Maybe you can include a suggestion for the school to have a consulting OT work collaboratively with the school. There might be a public health agency that already does that with the schools. I don't know what resources are available in your area. Ask around. Call hospitals, call public health, call counselling agencies, call OTs, call the local social worker, and ask your school psychologist or school social worker what resources are available for your family to access for your daughter. As for her memory, I have heard many parents who home school their children talk about teaching their children times tables through songs, because children seem to retain songs well. So...for example...think of Twinkle Twinkle Little Star....now do a 2 times table to that song...by saying 2, 4, 6, 8, 10, 12, 14, 16, 18, 20, 22. That is the 2 times table (at least up until 2 x 11). Do you find that she memorizes songs easily? Does she like to sing? Is she musical? I think that the homeschooling program Classical Conversations is one of the ones that do the songs to teach times tables. Of course...the problem then becomes that the person always thinks of the song throughout their lives whenever they are trying to figure out the mathematical equation...if that can be considered a problem. First determine if this will help your daughter. I don't know if the school folks will agree to this type of learning, and will include that into their IEP. You mentioned articulation. I am guessing that she sees a SLP at school. You can also hire external and private SLP to work with your daughter, but the work with a SLP is a lot of work and frustrating for parents and children. Bear in mind though, that every time that she is pulled out of her class for something, she is missing what the other students are covering. So, you will have to ensure that modifications are made to accomodate her every time she misses stuff. I like your creative idea about helping other students, as a means of empowering her, and increasing her self-esteem. That would be ideal, and you can include that in your IEP. I don't know how receptive your school would be to that, since every school has its own culture, teachers, and principals with different perspectives, interests, abilities, and orientations. What about looking into available groups---that help with social anxiety---offered at the school, social service agencies, or through privately run counselling agencies? Could you include having the school social worker or child and youth worker also as part of the plan, to help her with her self-esteem and social anxiety? Just a thought. She might not be ready for groups, but a one to one, or a small setting might be ok. Your daughter has been through so much. You are a great dad, always looking to find what is best for her. Always researching and helping others understand things better. Thanks for all of your help... wishing you the best with your daughter. Many blessings for both of you.

Wow...Buster, your visual example is amazing. Unfortunately, I really don't understand it all. I don't have a medical background, and am trying really hard to learn about everything as much as possible, even though there is so much that I don't understand. Immune modulating means that it suppressing something so that the other stuff can go to work? Is that it? I need to give probiotics. Thanks, Cristo

I read an old post by EAmom about azithromycin, and have a question. She was talking about the possible bad effects. Does this mean that azithromycin will help strep and pneumonia, but will make the body stop fighting against ordinary things like the flu or a cold, whereas pen v will still keep the body fighting against things?

Does this mean that azithromycin will help strep and pneumonia, but will make the body stop fighting against ordinary things like the flu or a cold, whereas pen v will still keep the body fighting against things?

What does immune modulating effect mean?

I read a post on this site that said that azithromycin is an immune suppresser. I believe that it what it said. I can't locate it now. I am wondering if giving a child azithromycin will cause immune deficiency. My ds7 seems to get fevers on and off, and sore throats more regularly than usual. I am wondering if azithromycin could have caused some kind of immune defiency. Some people on this site suggested that I take my child to an immunologist to check his immune system, so now I am wondering about azithromycin. Also...how do you know when azithromycin stops workng,and the person can no longer use it because of over use? Pharmacists and doctors say that they are fearful that using azithromycin will cause people to not be able to use the medication, because it will no longer work. CAn someone explain this. Any thoughts on this topic?

Definitely fill out the prescription. If things get worse, you will blame yourself later. Infections seems to bring out tics in my son, and the whole crazyiness started last year with a fever, cough, chest pain, strep, then strep again, then a sore throat, and ongoing congestion. Please...get it right away. Get more of it. Get as much as you can! It is right at the beginning of it all... so you can stop it extracellularly perhaps. At least...try. Please let us know how things go. Many many prayers go out to you and your son. It is so disheartening to see our children spiral down a scary world that is all too familiar to us. I ask that God gives you the guidance and strength to do the right thing, to follow the right treatment, to seek out the right people to help out your son, in the hopes of stopping things in their tracks right away. Remember while he is at the beginning of this whole thing...keep him as clean and clear form potential triggers as possible. Remember to keep sugar away, keep msg away, keep chlorine away, keep flouride away, keep tv the ds and video games away, keep stress away... don't force any homework, help him get a lot of sleep, do not force him to attend any early morning activities where you have to wake him up, don't allow any sick playmates around. Use the epsom salt bath. Stay home with him, and become more aware of things. I wish that I had jumped right away when my ds7 started with the grimacing, jaw jutting, head turning, and eye rolling immediately following an illness. I wish that I sought out antibiotics from anyone who would prescibe them to him, when he was sick. His body couldn't take it. Please do what you believe is best. I get the sense that you want to give him the prescription, but are afraid. Remember that pandas has a sister/brother called pitands. Tics seem to be connected to all of this somehow. Do what you believe is right. Follow that mother instinct. Fight hard for your son.

Can we get these tests anywhere? I live in Ontario Canada. Are these available here, or only in the US?

There are many immunologist/allergists in Ontario. Would any of them do, or do they have to be specialized? I live in Ontario, Canada. My son went to three immunologist/allergists in his life when he was 3. One determined that he had allergies to dust mites and mold, and penicillin, but he didn't have the component to prove the penicillin one. The other determined that he had allergies to penicillin (amoxil), and also didn't have the third component needed to determine whether or not he is in fact allergic to penicillin. We then were sent to Sick Kids hosp. The allergist there, determined that he gets an allergic reaction, but will not likely have an anaphalactic reaction. Nobody checked his immune system. Can I go to any of the allergy immune doctors and get the tests that I want done, or do they only do those immune panel tests at special labs?

It sounds like mice that enter a home from the outside to stay warm during the winter, can also transmit mycoplasma. Every winter we find that mice enter our home. We have covered different types of holes. Perhaps it is that the neighbours on either sides of us have cats, and the mice hide out here. It is awful! We have a nice home, and then these critters come in to hide out. To me, it is all gross. It is always around this time of year. We now believe that we have figured it out, and believe that they are getting in through the front screen door on the bottom, because there is a small space under the door, and the vents that cover the bathroom fans and the kitchen fan. Hopefully we will put an end to it all next year. My son asked for a hamster last year. We bought him one, and come to think of it, the hamster and the birds, combined with the repeated strep, pneumonia, lingering cough, stuffed nose, loud breathing at night, chest pains, itchy ears, repeated fevers, and the odd behaviours (tics and anxiety) could all be linked. I don't know. Just trying to figure stuff out. Plus, a neighbour accepted a play date just before my son got very very sick last year with the "sudden change", at our house, and she was continually coughing. My son had his typical cough, and she had this continual cough. People have accepted play dates at our house when their kids were sick. So weird! Another family of kids came over just before my son got sick with the "transformation" last year, and they all had fevers! Hello! Also, just before his "transformation" laswt year, one day I had a crisis at work, and asked the local babysitter who lives on the street to pick up my son from school, and watch him for one hour, because a situtation had arisen at work. While it would have been nice for her to tell me that that she was totally sick...she didn't. Imagine the shock I had when I picked up my ds and saw the local babysitter TOTALLY sick, with cough, fever, and looking all run down! Seriously...just for a mere 10 dollars, she chose to expose my son to that! Of course, two days later, he was totally sick. Anyways...I am trying to figure out what happened to my son. Perhaps he has a whole bunch of things that are still brewing inside. Is any allergist/immunologist an acceptable person to go to? We live in Ontario Canada. My parents have cats that every so often escape outside. I have always worried about the cats, because on occasion they have fleas...maybe ticks...who knows? We just went to see them, and I made sure that we only stayed for one hour. I was afraid that my son would pick up something from the cats. I know...paranoid, and worried. What about Christmas trees? Don't they potentially carry ticks from the deers in the woods? I found bugs on the tree that we bought at a dept store. When we opened the tree, little critters came out. YuK! I will only go with artificial next year...and of course...subsequent years.

My ds7 really improved everything after being on azithromyin for 3 weeks. No sinus isses, no snoring, no itchy ears, no chest pains, no chest congestion, no sore throat, and no anxious behaviour. The tics slowly subsided, but that took time. They initially went away within two weeks of azithromycin, and then came back when he ate something with sugar and dye in it. My son had an ongoing stuffy nose, cough, chest pain, and itchy ears for months and months on end that suddenly stopped after taking three weeks of azithromycin. Actually, his stuffed nose had been around since he was three years old, so that means that he had it for four years, along with an ongoing cough that never really went totally away. I found the whole thing odd. His pediatrician said it was allergies. She had an xray of his adenoids and determined they were enlarged. I suspect that he was harbouring stuff in his adenoids, tonsils, sinuses, chest, ears, and throat. He had confirmed strep, that the doctor treated once, and then said to wait and see, then next time. It is just too weird that three weeks of azithromyin cleared him of the four years of his ongoing cough. He couldn't go swimming without crying that his ears hurt, and that water went in his ears. The ent said he was normal. He continues to have big tonsils. We switched pediatricians. His new ped says to let him know if ds7 has an ongoing cough, because that is not normal. I also go to doctors who will prescribe antibiotics, because most doctors are reluctant to do so. It just all seems weird that he had such huge huge symptoms dealing with infection (as far as I see it) and the doctor just said it was allergies. She referred to an ent, who said that it was ok, just wait and see. In between all of this, whenever he would have fever for a few days, his former ped would do an xray, and then determine that he had pneumonia. Believe it or not, she said that she never could hear the pneumonia on her stethescope on any of the times that he had pneumonia. She only determined that he had it via xray. So, she said that he had it deep in his system. So...it looks like my son has pitands and pandas. Infections bring out the symptoms. Fever makes me scared, because it is a starting point. When he says that he has a headache, it is an indicator that he is run down and will get a fever that night or the next day. If I don't get azithromycin right away, his handwriting gets really bad, and he doesn't have the same happy go lucky personality. I just find the whole infection thing interesting. Is that because he has the strep bacteria or pneumonia hiding waiting to come out when he is sick, and make things come back again?

How long has your daughter been on azithromycin for? Is she on the highest dose possible, which is 12 mg per kg of body weight?

When my son gets a low grade fever, gets run down from staying up late or from getting up too early for hockey practice, he gets run down, and then gets sick. As long as azithromycin is given right away...he doesn't spiral down the crazy tic path. He says that he feel them coming on, and I notice them starting. So, I really try to jump on it right away. There must be some kind of connection between infection in general, tics, and antibiotics making them go away. Maybe that it pitand? Maybe my son had pandas and pitand at the same time last year, and now is totally susceptible to having it come on strong again. I don't know. He has a tic disorder that seems to come on strong with an infection/fever, and then goes away with azithromycin. Interesting. What is that all about?

When my son gets a low grade fever, gets run down from staying up late or from getting up too early for hockey practice, he gets run down, and then gets sick. As long as azithromycin is given right away...he doesn't spiral down the crazy tic path. He says that he feel them coming on, and I notice them starting. So, I really try to jump on it right away. There must be some kind of connection between infection in general, tics, and antibiotics making them go away. Maybe that it pitand? Maybe my son had pandas and pitand at the same time last year, and now is totally susceptible to having it come on strong again. I don't know. He has a tic disorder that seems to come on strong with an infection/fever, and then goes away with azithromycin. Interesting. What is that all about?

Does the generic amoxil and the other ones you've used, have dye as well? I just discovered that the generic azithromycin liquid doesn't have the red dye that the brand name has.

You said that he got better on amoxil, so go back to what worked with him. Too bad about the doctors that put him on other stuff that made him worse. It could be the herx that people talk about. It could be the dyes. It could be that his body works best with amoxil. My ds7 was on azithromycin last year for a few weeks, and he ended up having some weird terror attack when he woke up one day or something at the end of those weeks, and I pulled him off the azithromyin that day. Naybe it was the herx effect then. I don't know....but it was weird. He tells me now that he thinks that he was still asleep. He remembers the rage. So he raged after a few weeks on the antibiotics, which freeked me out. He raged that morning, and then never did again. It was a sign to me that he had enough of the antibiotic for his body. He stopped with the sinus infection, the extremely loud breathing at night, with the chest pains, with the strep, with the coughing after a few weeks of high dose azithromycin. My son cannot be on biaxin, which is in the same family as azithromycin. So who knows... Maybe go back to amoxil. If it worked...do it again. That's what I do now. Azithromycin is my choice, not any other one. It is the one that works. It kills off all kinds of things like sinus infection, pneumonia, strep, ear infections etc. My son cannot be on amoxil because he gets an itchy rash. So, azithromyin is the only way to go. What does your mother instinct tell you? What kind of stuff have you gathered from this forum to help you decide? This forum helped ds7's mother, who used this forum in the summer to figure things out.

What tests do we request if we live in Canada? Ontario?

You said that you wish you had known then what you know now. A pandas doctor would do the prophelactic dose you said. Is that what you mean? Is your daughter on a prophelactic dose now? Is she better now? I try to get my son on azithromycin whenever he starts a fever, and tells me that he feels all those things coming on. It seems to stop it in its tracks. Last year, I was able to put him on 12 mg/kg for 15 days, and he really really improved. All of his coughs, chest pains, and chronic sinus issues went away. His behaviour improved. Looking for advise on what Dr T would likely do that you believe is good.

Guy, have you noticed any reaction to colds or flu? More or less? I have noticed that when my ds7 has a fever or feels run down, he starts with the mild tics and tell me that he feels like he wants to do the shoulder shrug thing. I try so hard to beg for antibiotics to treat him right away. There is definitely a correlation between fever and tics, and being run down and having tics, and not sleeping enought and having tics. The part about being run down and not sleeping enough leads to him getting sick, because he is more susceptible to catching everything around. Oh yes...when he has less sleep, he gets a headache which then leads to a low grade fever, which then leads to the start of tics. Antibiotics helps make them go away. He has an allergy to amoxicillan, so we only do azithromycin. Funny...but he had a reaction to biaxin years ago, and it happens to be in the same family as azithromycin, but he doesn't react with any allergic reaction to azithromycin. Anyways...yes...illness is connected to more tics. Feeling run down is connected to more tics. Feeling run down is connected to getting sick. A low grade fever is connected to tics. I now wonder about this connection, and would like to understand more.

Does that mean that taking antibiotics here and there when they have fever is not a good idea? Is it better to do it prophelactically throughout? Not many people will prescibe it prophelactically.

When my son gets a low grade fever, gets run down from staying up late or from getting up too early for hockey practice, he gets run down, and then gets sick. As long as azithromycin is given right away...he doesn't spiral down the crazy tic path. He says that he feel them coming on, and I notice them starting. So, I really try to jump on it right away. There must be some kind of connection between infection in general, tics, and antibiotics making them go away. Maybe that it pitand? Maybe my son had pandas and pitand at the same time last year, and now is totally susceptible to having it come on strong again. I don't know. He has a tic disorder that seems to come on strong with an infection/fever, and then goes away with azithromycin. Interesting.

What is the lyme test in Ontario Canada called?