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Broo100

Posting after a long time with Good news

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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.

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Very happy for you and your son! Thank you also for coming back to provide an update! Mind if I ask what natural anti inflammatory and probiotics u used? Have high myco titers here along w coxsackie a & b. Also, did u try a gluten free diet by chance?

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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.

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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.

How did you know that your son has Mycoplasma?

I wondering if my daughter has the same and it was trigger for pans/pandas, what was your symptoms? What kind of tests we can do to find out?

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I'm glad to hear that everything is going so well. Good for you!

 

Your post almost gives me the courage to try to wean the antimicrobial herbs, leaving the anti-inflammatory ones and probiotics. Our maintenance dosage of antimicrobials is quite low, but it would be nice to take an extended break. Sometimes I get tired of all the infusions and tinctures.

 

I just found this article on GreenMedInfo which refers to the production of methylfolate by bacteria introduced into the gut through the use of fermented milk products:

 

http://www.greenmedinfo.com/blog/how-microbiome-make-us-supra-human-1?page=2

 

Your mention of the adverse effects of fish oil struck a cord as well. I did notice an increase in ticcing several years ago with salmon oil supplementation and noted it in my charts, but apparently forgot about it when I started supplementing DD14 first with hemp oil in her kefir/whey smoothies this summer, and then with the additional supplementation of cod liver oil this fall.

 

I noticed a bit of ticcng through the summer but thought nothing of it as she still has a bit of a propensity to do that (upon suggestion), but after the addition of CLO it became quite noticeable. She has been having ongoing orthodontic work done (braces, extractions etc.) and that seems to be the area effected by ticcing (jaws and neck).

 

It took a while for me to remember that fish oil had previously been a significant culprit but then I immediately stopped supplementing the PUFAs. The ticcing cleared within 3 days and hasn't returned.

 

She is fine with pastured butter/ghee, coconut oil and olive oil so I will leave it at that. Olive oil is mostly monounsaturated, so different from the other seed oils.

Edited by rowingmom

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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.

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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!

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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.

thank you so much!!! I think we will go back to pediatrician and will ask for these tests.

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