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Broo100

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Everything posted by Broo100

  1. Thanks. Did it settle after the growth and puberty set in?
  2. Hi everyone, my son, 14, has been doing quite well but he has been going through a huge growth spurt since the summer. He has been tic-ing quite a bit and does not seem to have any infections. These tics don't seem to be accompanied with any stress or anxiety. Just blinking and head jerking but does not seem to bother him. I wonder if the growth spurt itself could be inflammatory. Any thoughts?
  3. Hi there. I have not been around for a while but my son has been diagnosed 3 times in a row with strep A and can cannot seem to shake it off. Does anyone have any experience with this? What antibiotic did you use? Thanks
  4. several rounds of Biaxin. It was a tough medicine to take. Lots of herxing
  5. Rowing mom, I am sure you know this but as my orthodontist explained to me, braces create an inflammation to allow for the expansion and movement of teeth and jaw into the right place. My son sounds very similar to your DD. He also started ticcing a ton with dental work. Poor kids! As far as antimicrobials I don't think we ever took any but we are a mediterranean household and add garlic to everything so that, I'm sure, helps. I think that, while he was in his big flare, many things would trigger him, specially sugar (immediately) and gluten. Not sure about milk. As he starting to steady himself he was able to incorporate those back. Olive oil is our base fat. Fish oil, which seems helpful to many kids was terrible for his tics. If his tics were speially bad Motrin always helped. It was clear to me that I needed to tackle the inflammation. Good luck Rowing Mom!
  6. alyonushka, there is a specific test for Mycoplasma. My doctor did a full panel of tests including strep, mono, lyme, coxsackie, mycoplasma... i was not able to tell any symptoms of mycoplasma except, after it went away my ds was much more calm, focused and steady.
  7. Sure. He takes hyper biopics PRO 15 (little round ones) and he loves Yakult. The antiinfkammatories are enhansa repair. Coxsackie was a big trigger too. He had that around 18 months ago. It resolved quickly after the right medicine (can't remember what it was). When he was in his initial flare both sugar and gluten were terrible for his symptoms. Now he can take both with no problem. I try to keep a relatively gluten free diet at home but out the the house is not really monitored. Another thing, I found that fish oil made things worse so I stay away from it and make sure he eats non Mercury real fish a couple of times a week. Good luck. The parents in this board are smarter than any doctor. I am so grateful for their guidance.
  8. Hi everyone, I have not posted in a long time but I wanted to come back and give an update as this site was a lifesaver for me and my family. My ds was diagnosed at 10 with PANDAS which manifested in horrible vocal and physical tics, OCD and over the top anxiety. He had two main infections at the time Strep and Mycoplasma. I don't want to jinx it but my son is now 13th and completely back to normal. No antibiotics, just a daily dose of natural antiinflammatories and probiotics. He also takes allergy shots as his seasonal allergies were also a trigger. He is thriving at school and out of school. I still watch him like a hawk whenever he has a cold or has a moody day but he seems very steady and strong and calm. He may actually be able to go to boarding school for high school which has been a long dream of his and I never thought would be possible. In retrospect, killing the strep was easy, killing the myco was very hard. Dealing with the allergies was the final step of the puzzle. I was lucky with great doctors. Good luck to everyone, There is light at the end of the tunnel. I hope that as he hits puberty (he is a late bloomer) I will stop worrying. I know that i never will but that is my hope.
  9. Just when I thought my 12 ds was out of the woods he started with some strange behaviors and anxiety. No strep, no infections that I could detect. Then, boom! Stomachache that gets worse and Turns out he has appendicitis. They blast him with antibiotics, they operate him and he is back to his cool self 2 days after. This Condition will never stop to amaze me. The good news is that everyone in the hospital was knew what pandas was (NYU) and were curious but matter of fact. What a difference a couple of years make!
  10. Absolutely yes. I am certain that myco was the big trigger for my son (even if he also had strep at the time too). It was only after the myco was gone (2 years later) that his good mood returned. It was hard for me to assess if he was in an adolescence moody state or if it was pandas. After the myco was finally gone he was so much calmer and positive. It was very gradual.
  11. What a timely post! My son just started getting those three weeks ago. His seasonal allergies were triggering his pandas. He tested extremely allergic to several pollen and weeds allergens. He has not had any adverse reactions to the shots. I will let you know how things look in the spring but so far so good
  12. Hi everyone. My 12 to son had a neuropsych evaluation and all sort of interesting things popped up. He has Inattentive add (without hyperactivity). His test results go from 50% on untimed to 98% timed. The two official dianoses for the DOE are Specific Learning a Disorder with impairment in reading and Provisional tic disorder to cover his PANS. HIS school is going to offer him more time in his exams which is going to really help as well as targeted support. The neuro lady suggested that, In the future, we may want to consider some adhd medication. She has no background in pandas. My question is, do these type of medications worsen pandas symptoms? He is doing great and off all medications now but infections trigger the cycle again. His triggers are strep, coxsackie and myco (maybe more but so far these). He is asymptomatic when infections are clear. Thanks
  13. My son tested negative for lyme but we are fighting myco. I wonder if we should keep looking for lyme somehow
  14. Thanks. Does anyone have a good recommendation for a doctor in manhattan?
  15. Ok. It was not till very recently when I figured out my son has chronic asymptomatic myco. His icg went is still pretty much unchanged at 1324 and his icm slightly lower from a year and a half ago to 820. At first I was concerned with the other active infections that he was battling but now I am reading up on how myco can be host to so many other diseases. First of all, can a kid have chronic myco and no symptoms. Second, can he have myco and no Lyme? Third, any successful stories on beating chronic myco? What was the protocol and how long did it take? My son took one week of biaxin last year and was not tested till a year and a half later. I feel like his pandas doctor should have followed up. What is an appropriate doctor to deal with chronic myco? Would dr t be the man or someone more specialiEd? Help please.
  16. And thanks for the book on counfections. I just ordered it. He has been on enhansa (anti inflammatory curcumin based) doing very well.
  17. Interesting. Now that I have cleared his coxsackie and pneumonia I will start tackling his myco. The thing is that he looks and feels perfect. How long should I keep him on antibiotics for myco? How often should in retest?
  18. Hi everyone, whenever my son starts tic-ing (quite infrequently now fortunately) his blood work shows an infection (strep, coxsackie...) but it always shows high Mycoplasma. If I treat the other infections he gets back to normal. Could it be that his high Myco levels are now chronic and have no physical effect on him? Should I try to bombard him with antibiotics to kill it (did not work in the past) or just let it be? Thoughts?
  19. Looking back, my brother had Pandas growing up. Weird tics all that came and went. OCD. Add. You name it. He just outgrew it and is now a big boss at a multinational corporation. I think about him every time I get worried about my ds. I feel that, at least, my son has tools and support that my brother never had (like this board!).
  20. He came home complaining about twitching in both arms when he plays the violin and writes. Tell me it is related to the crazy seasonal allergies we are having? Sigh.
  21. I also don't want to jinx it. We caught my son very very quickly were able to treat his strep and myco very early on. We have an ongoing protocol of probiotics and anti inflammatories that has worked very well. It also helped tremendously when I got his sisters' tonsils and adenoids out. They were chronic carriers although no pandas yet.
  22. Besides my 11 yo Pandas boy I have two girls. They have transient eye blinking and small tics that come and go. I frequently wonder if they have a much milder form of PANDAS that comes and goes whenever they have a bug. Is this possible? And could it be possible that it just stays this mild? In fact, Could most transient tics actually be the body fighting off infections?
  23. I too wonder if I have a warped memory. I mean, if my kids' hair started falling out in clumps I am certain I would panic in many ways but since my parents were so laissez faire it does not seem like such a big deal in retrospect. I also have to add that my own mother had her tonsils out when she was young because she kept getting strep and that I, who never got strep as a child, have gotten then nonstop ever since having children. It finally stopped when all 3 of my kids got their tonsils out.
  24. I think that my brother, growing up in Europe, had PANDAS. He was an organizational mess, anxious, ADD, lost everything and had tics (motor and vocals) that came and went. Once, his hair even started to fall out. My parents, were so relaxed about everything and thought it was all a phase. Everything resolved sometime in college and now he is a very successful businessman (engineer). My ds, 11, reminds me a lot of him except that when he got his flare, it was more intense than I remember my brother's being. Do you think that you or someone closely related to you had PANDA/PANDAS growing up? Did this person grow out of it? Would your say that your dc's is "stronger"? I am very curious and thinking that this is a situation that could b outgrown (like my brother's) gives me hope. Thoughts?
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