riffleshell
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Posts posted by riffleshell
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Are you using any supplements? I personally find supplements to be helpful with behavioral stuff like you are describing.
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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!
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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!
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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.
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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!
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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.
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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.
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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 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.
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Interesting. DS5 has the preoccupation with people's ages too as well as an intermittent stutter.
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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 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).
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Thanks for posting this! Very interesting.
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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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Here's a kind of a basic question: My PANDAS boy (11) is mostly doing well, with a few hiccups now and again. He's never had tics--at least none that I've noticed.
He has a new music teacher this year that he seems to really look up to. (He has previously had zero interest in music.) This music teacher is focusing on teaching the kids to drum rhythmically--bongos, whatever.
So my son walks around the house tapping out beats constantly. He can stop if you ask him, but he might start up again a few minutes later.It's not really a huge problem--except it can be a little annoying at times. No other signs of a flare.
How do I determine if this is a tic or just a new-found love of music? It's been going on for a few months.
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We're all pulling for you!
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Thanks so much to everyone who responded. Sorry I got a little swamped and didn't write back -- my youngest broke in full-blown strep and is showing lots of mildly odd behaviors, so suffice to say, I was not on the computer much.
But your emails were helpful, I'm feeling good about my decision to go up there. I hope he can give me some answers.
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After a year of this PANDAS nonsense, I'm finally biting the bullet and taking both my kids to see a specialist, Dr. Rao in Plano.
I've posted about my oldest fairly frequently. He was diagnosed with PANDAS about a year ago and is doing very well, but he had a minor flare this week. I also suspect my youngest has PANS/PANDAS but he does not have high strep titers and his symptoms (incontinence, inflexibility, separation anxiety) are fairly mild and did not onset suddenly.
Please send me private messages about your experiences with Dr. Rao as I believe the administrators do not want us reviewing the doctors in public forums.
I want to know:
- What tests did he do for you or your child?
- How was working with his office? I live 4 hours away and will need to be in phone communication with his staff. How did that work out for you?
- Is he known for having one treatment he always recommends?
- If you have a milder case (as both my boys are) what did he recommend for you?
- Anything else I should know?
Thanks!
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My first post to this forum had almost the same exact topic line. The answer, for my older son, was absolutely yes -- he never had tics or anything that looks like typical OCD. But he definitely has PANDAS. And he is doing very well now. I'm glad this forum was here to help me catch it early. (Thank you all so much.)
My younger son sounds very much like your niece. At this time I have no official diagnosis for him but he has occasional inflexibility, rages and urinary frequency/incontinence. He doesn't have classic OCD but he definitely does have the kind of "particularity" that pr40 describes above.
He's a sweet kid, but given what I know I can't help but think this might be PANDAS too. He does not have high strep titers, so I'm taking him to a specialist in two months who can do more extensive testing. In the meantime, I've been giving him some of the same anti-inflammatory supplements as his brother (fish oil, vitamin D3 and vitamin C -- safe enough things to try) and already I see an ENORMOUS improvement. This confirms my sense that we are likely dealing with PANS/PANDAS.
Whatever your niece is struggling with, it would be so much better to catch it now. Good luck to your sister.
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[You are not the only one who reads MTHFR inappropriately--LOL.]
Seriously, though, I need to learn more about it. I know that supplements have helped my child but I don't understand why.
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hmrz: It sounds like your son has had quite the journey and is doing very well!
I also don't want to hazard a guess about what could be affecting your child, so I'll just tell you our experience and maybe something will be useful to you...
Like many here we were on fish oil but still having some difficulties so our pediatric neurologist recommended Vayarin. That was good, but things still weren't perfect, so the neurologist recommended that we use fish oil and Vayarin, which seems to be the ticket for us. He has much better focus and decision making with the both. The vitamin D3 also seems to be a big part of his recovery as well. We also take Vitamin C, curcumin and probiotics.
But even with all of that we still haven't completely eliminated all flares....they are milder though and seem to be longer and longer between, but I think that's just the general healing process working and not any one pill. I don't think Vayarin does much of anything to prevent flares, it just improves the baseline of behavior.
Good luck to all!
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I suspect my five year old has "walking pneumonia" - presumably caused by Mycoplasma pneumonia, but I don't know that for sure. His illness seems to be triggering a mild flare in my PANDAS kiddo.
So what's the best antibiotic for myco p? Have an appointment on Tuesday and want to ask the doctor for the best/strongest option.
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This is an interesting topic to me too. I have a middle schooler with diagnosed PANDAS and a younger son I sort of suspect has "pre-PANDAS." He has some separation anxiety, difficulty falling asleep, urinary frequency/incontinence, large pupils, and he is a very particular child. He also used to love to draw and now he doesn't. But basically he's a sweet kid, he has friends, his teachers like him, he's fine.
My pediatrician pointed out that none of these symptoms are really all that unusual in a five-year old. Which is clearly true. We did testing anyway and his strep titers were totally normal. So I'm at a loss of where to go from here. Do I take a kid who is basically doing fine to a specialist four hours away for extensive and expensive testing, over my husband's objections?
For now, I've been giving him fish oil, which seems to have helped with the incontinence, interestingly enough.
Sleepless in South Bend
in PANS / PANDAS (Lyme included)
Posted
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
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.