

riffleshell
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riffleshell last won the day on August 7 2014
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About riffleshell
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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.
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To change or not to change doctors
riffleshell replied to cobbiemommy's topic in PANS / PANDAS (Lyme included)
Are you using any supplements? I personally find supplements to be helpful with behavioral stuff like you are describing. -
First week with a child who likely has PANDAS
riffleshell replied to Q_is_my_world's topic in PANS / PANDAS (Lyme included)
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 ha -
In the initial treatment stages of PANS- have q's
riffleshell replied to mybabyo's topic in PANS / PANDAS (Lyme included)
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! -
Sudden behaviors-- is it a flair?
riffleshell replied to BeeRae22's topic in PANS / PANDAS (Lyme included)
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. -
Lightning can't strike twice right?! Please no!
riffleshell replied to TinyTreasures's topic in PANS / PANDAS (Lyme included)
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! -
What does recovery look like?
riffleshell replied to riffleshell's topic in PANS / PANDAS (Lyme included)
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 e -
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.
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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 iss
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Smooth speech no longer...
riffleshell replied to Lydiasmum's topic in PANS / PANDAS (Lyme included)
Interesting. DS5 has the preoccupation with people's ages too as well as an intermittent stutter. -
BeeRae22 reacted to a post in a topic: Spoiled rotten
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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.
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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 w
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archived pediatric grand rounds 12/11/14 Dr. Swedo
riffleshell replied to EAMom's topic in PANS / PANDAS (Lyme included)
Thanks for posting this! Very interesting. -
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.