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riffleshell last won the day on August 7 2014

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  1. I also am so sorry for your recent loss and you are real warrior dad to fight PANDAS and your grief at the same time. In addition to MomWithOCDSon's suggestions, here some things you can try in addition to your prescription antibiotics vitamin C turmeric/curcumin a touch of benadryl at night -- helps with sleeping and the anti-histamines help some with PANDAS symptoms. anti-inflammatory diet You can see what supplements we take in my signature below, but not every kid has the same reaction to every nutritional supplement or medicine.
  2. Are you using any supplements? I personally find supplements to be helpful with behavioral stuff like you are describing.
  3. Sounds like pretty classic PANDAS to me. Agree with the others--get to knowledgeable doctor ASAP. Early treatment makes a huge difference. While you are waiting: feel free to try supplements and diet modifications as this is a tad bit of trial and error anyway. My PANDAS doc seems to recommend turmeric + n-acetyl cysteine to most of his patients. Huge improvement over here on those. Also many pandas folks recommend fish oil, vitamin C, vitamin D, magnesium and other supplements as well. Many. many people report great results with a gluten free or paleo diet -- I've never quite made that happen but we do try to eat anti-inflammatory foods in other ways. Not every kid reacts the same way to the same supplements or diet changes, so introduce changes one at a time and track the response. Good luck!
  4. I can't answer most of your questions but there's one piece I'm willing to take a stab at... I don't know this test for Candida, so I don't know what an 18.9 means. But Dr. Rao told me that Acyclovir can increase yeast. Are you giving a probiotic with the Acyclovir? It's possible that increased yeast might explain part of the backsliding from 80% better to 30%-40% better. (Could be a million other explanations too however.) Good luck!
  5. Agree with PR40--your question is the answer. There is no way to know what will happen now, but if your child has been doing well for 9 months, it is certainly very possible that this will just be a quick blip and you will get back to a good place soon.
  6. Unfortunately, lighting can and often does strike twice. Many of us here are twice blessed! I think my younger son might have had an earlier onset/flares that we missed, just chalking it up to typical toddler/preschooler behavior. So you are doing well to catch the second one so early!
  7. So nice to see this thread pop up again! I'm the original poster and I guess I'll just report back that this January/February were much, much, much better than last year. What a difference a year makes. My older son is NOT "cured" and still takes quite the cocktail of nutritional supplements. His PANDAS is still with him, but it is not currently running his life--nor ours. Many thanks to the help and information on this board. In my first post, I asked if this could possibly be PANDAS. Many of you very politely and kindly told me, "DUH YEAH THAT'S PANDAS." That really helped. I got early and fairly decent treatment initially and that made all the difference. Now we are in the hands of pandas specialist. Thank you thank you thank you. Unfortunately, his younger brother recently onset so...this household not out of the woods entirely by any stretch.
  8. My doc recommends Klaire Labs Ther-Biotic Children's Chewable -- It has 25+ billion CFUs, multi-species. My super picky five-year old doesn't love the taste, but I think most kids would eat it -- it is cherry flavor.
  9. Could it be 'steroid rage'? I agree that you should try ibuprofen 3x a day for a week or so. That will help you know if it really is PANS/PANDAS, as the previous poster mentioned. And if it is, see a PANDAS specialist (as listed on the pinned thread or on pandasnetwork.org) right away. It's excellent that your pediatrician helped you with the diagnosis, but s/he shouldn't be managing treatment.
  10. jumping into the conversation... simplyshine: Intense emotional outbursts + defiant behavior + attention issues = your child is still struggling with something. A PANS specialist should help you figure out what to do next. Glad you've had so much healing already! My bet is that your child can get even healthier. babyboo77 - sounds like you also need a specialist. Regular docs, even really good ones who believe in PANS, are not super helpful. Many people describe the healing process as "saw-tooth." That was also my experience. Awilliams: You wrote "I now wonder with his sensory issues and ADHD that seem to have been around forever if PANS has been with him for longer than we thought" -- YES YES YES so much more research is needed here.
  11. Interesting. DS5 has the preoccupation with people's ages too as well as an intermittent stutter.
  12. I just want to chime in and say that I sympathize but I have no easy answers. Early bedtimes do help A LOT but I can't always make them happen over here either.
  13. A while back I wrote about my younger son, wondering if he could have PANDAS too. Things have continued to devolve since then and I’m driving him to Dr. Rao (PANDAS specialist immunologist) for a full work-up next week. I have two questions for the crew today: 1) Have you ever noticed that some symptoms get better while others get worse at the same time? BETTER: One of my 5 year old's biggest symptoms was that he was not consistently dry. Today, after a round of strep—and antibiotics for strep—he is almost always dry day & night. WORSE: He’s developed full-blown OCD--hand washing 50x a day, fear of contamination, constantly asking about what can kill him, it this poison—it’s very, very distressing. He’s also even picker about food than before and over-sensitive to smells. He’s just in a state of high alert all the time. Apparently he functions well at school, he just falls apart at home. 2) What do you recommend to help calm a child who doesn't have an antibiotics prescription and who won’t swallow pills? He’s already taking chewable fish oils, vitamin d3, vitamin C and a probiotic. And sometimes ibuprophen. In case it’s not clear, we still do not have an official PANDAS or PANS diagnosis as his titers are not high and there’s no clear connection to strep (or not clear enough for my nice but not PANDAS-knowledgeable pediatrician).
  14. Thanks rowingmom. That's a helpful way to think about it. If the drumming is a PANDAS symptom, it's definitely the best one we've had. I'll take this over the rages any day.
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