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Vitamin C will hype my DS at a dosage of 500 or greater. We use 250 and it seems to support him well. I will say that for some, Quercetin is a problem because its a sulfa donor. My son has CBS mutations which make sulfa difficult. Can't take NAC either for that reason. I do agree that histamine is a major, often ignored, player!

I agree with Qannie. It's better to quiet the hyperactive immune system reaction. That is not a chain that should be started. As their immune function matures, they will be better equipped to handle this - but for now - with a previous strep/tic correlation, it's best to treat. No published literature that I have seen says that outcome is better when treated early. However, Dr. L is due to release a study soon that seems to indicate this result. And anecdotally, in the PANDAS community, this seems to be the general thought. Those of us that were diagnosed late, have more problems (my son was at least 4 years late...).

We discovered the hard way that the "brilliant blue" dye used in the clindamycin was wreaking havoc on my kiddo. Just something to consider. We switched to a compounded dye free version and all was well again.

PANDAS/PANS is becoming a murky diagnosis as more and more people are showing evidence of neurological symptoms due to infection or immune compromise. So I can understand your confusion. By definition, PANDAS is caused by strep, and PANS is caused by anything. The first flare is classically an abrupt onset but often people miss the first onset and a wax and wane pattern can be seen. So I would not rule out PANS at this point. I think it's very reasonable to go ahead and investigate the possibility. Your first step would be to visit the PANDAS network site and find a provider that could assist you. That provider would likely order a slew of tests to determine if indeed there were any active infections, including lyme, mycoplasma, strep.... Obviously there are indeed other triggers besides infections- micro/macro nutrients could be out of whack due to the environment, mold, or other genetic issues (sometimes supplements meant to help kiddo -- can actually make them worse). Allergies are huge player as well. Gluten and dairy as you mentioned can be pro-inflammatory and even if there is not an immediate response-- removal can sometimes ease the burden on the immune system. There are a host of gut issues that could be addressed as part of this process. This journey is about peeling the layers to find root causes. It's exhausting but not without hope. So many people have indeed been helped!

Rachel, There are a number of people on this forum that are considered adult PANS and I am hopeful that you can connect with some of them. I am also going to PM you so please check your box. You have what sounds to be a very difficult yet classic PANDAS presentation. I am glad you are working with a knowledgable practitioner. Please excuse my questions below as I do not myself have the focus needed to read closely tonight. I do wonder, (perhaps you stated this already), if you've been tested additionally for lyme/coinfections. Many people here find that strep and viruses are indeed a problem, but that the reason they have all of this issues is because of a compromised immune system to begin with. So lyme and other more potent initial triggers can leave you wide open for chronic infections of all sorts. It might explain why you have not been able to rid yourself of strep. It might also explain why your sister has problems. There are people who believe congenital lyme is very problematic and widespread. Anyway, its a possibility. You can chase these infections down one by one, but ultimately without a healthy immune system you will always be behind the eight ball so to speak. Which leads me to my next question. Have you done any genetic testing or immune function testing to further investigate why you are so sick and susceptible. I'm sure you read about immune therapy, but once Lyme is ruled out, the next route would be to work on strategies to strengthen the immune system. This is accomplished, as you mentioned briefly with probiotics, but targeting the gut more specifically, nutritional balancing, and possibly even IVIG/PEX if immune testing demonstrates its needed. Some people here have had great success with tracking down micro and macronutrients that were causing more inflammation problems. By removing these items, they experienced a great boost to their immune system. Some people have needed IVIG to jump start a faulty immune system. Also have you had your tonsils removed? Its a safe bet that they are harboring strep and should probably be out if not already. I am so sorry that you have been dealt this lousy hand of cards. The silver linings may not be evident now but there are always some to hang on to. I am betting you are wise beyond your years, incredibly empathetic and compassionate and very intuitive. These are gifts which I bet you will use to help others. Hang on to hope. You will get there.

Hi pr40. Thank you for this post. I watched with great interest. DS15 has the temperature issue as well. In fact it was one of his major symptoms prior to a flare. He is always wearing short sleeves and complaining of being too hot - but during a flare he flushed and felt as if he was burning up. Unfortunately I have learned the hard way to not get too excited when I see a new treatment option. The video looks so promising but I'm a natural skeptic. I do think however if one presents with the temperature issues - it could indeed be worth a try as its intranasal and low dose with seemingly little side effects to start. Long term, I would be concerned about addiction or what it does to the brain. But it could buy some time and provide some relief possibly. I do wonder if these kids in the video were additionally screened for infection/parasite, thyroid disorder, autoimmune. Much of what they describe sounds so PANS related. My driving force is always that these horrific things dont just happen to people. Something causes the problems. The challenge is always finding the root cause. Please please keep us posted on what you find.

I would like to add just 1 cent to this conversation. My son is 14. An interesting development occurred in that he is now able to describe what a flare feels like for him. This never used to be. When he was not flaring, he barely remembered the flare itself. And in a flare, communication was next to impossible. But a light bulb occurred. He can now describe it. He can now remember it. Unfortunately he also lives in fear of "it happening again." When he is flaring, his brain is swollen. To him, he feels like his head is wrapped tightly in a dark cloth. He can still hear noise and see light but he cannot process quickly enough. It's like everything is completely muffled and filtered. He's present but things are moving along without him. He simply cannot follow along in class. And that makes him feel so sad and so anxious. Because normally, he is sharp and follows right along. In fact normally he's used to being very efficient and at the top. When reading text in a flare, he must read words over and over and over to make any sense of them. His short term memory in a flare is completely gone. His working memory is also gone. With complex math for instance which is normally easy for him - he still knows how to do the problem but gets lost in the steps. He cant remember which steps he's already completed. And simple math concepts like adding positive and negative numbers are all but forgotten. There is some sort of plug in his brain. Some sort of block. I have caught him a number of times, literally smacking himself trying to figure it out. The anxiety created from all of this is incredible. He literally loses his mind -- and he now knows it -- and that makes him understandably incredibly anxious in a flare. It's horrific. Add in the OCD and food refusal - ugh. My son isolates in a flare. He knows its not his normal him. If your son is like mine its no wonder they don't want to go to school when they are flaring. It's painful to not be able to do the things they know they should be able to do.

Ok, DS14 PANDAS morphed to PANS responded well to azith when younger. Remission for a long while until recurrent sinusitis and monthly flares. Dramatic improvement after discovering probable celiac and going gluten and dairy free. Remission for a year. Then returned with every 6 -10 week flares as of July. MTHFR 1298c homozygous. 23 and me pending. Suspected problem detoxing ammonia. Gut issues: we are gluten/casein free and try to avoid soy and GMO and low sugar. We tend to avoid phenols as well. We are on digestive enzymes. Dysbiosis - and yeast "confirmed" via stool and OAT tests (parasites negative) and we were about to treat but.... PANDAS doc now suspects we have strep in the house via little brother. Little brother has some PANDAS symptoms but doesn't "flare" and has been able to manage and function well. But he does get regular strep throat. Big brother has an ongoing issue with sandpaper cheeks and arms and now trunk. Had previously thought it was keratosis p. Doc wants to treat both boys with Clinda - three times a day X 3 weeks and Rifampin X 1 week. I'm a little nervous to go back on hefty antibiotics for both boys-- scared about gut issues and not sure strep is indeed the culprit in play. And how do you space the probiotics on a three time a day antibiotic?

Though our triggers are more varied now - PANDAS morphed to PANS - I can say DS had perianal strep two times in his younger years. It was bright red (around the anus) and caused him discomfort. He could not really say if it was itching if I recall correctly - he just kept saying he was uncomfortable. At home and at first we thought yeast, and then pin worms, until eventually the pediatrician took one look and said "strep bottom." Antibiotics cleared the infection. As said, for us this was not a PANDAS/PANS event -- but of course it happened prior to our diagnosis. So maybe it did trigger a flare...

If you click on "other bacteria and viruses" it will list some of the more common players with regards to infections. On this board, Lyme and its coinfections - bartonella, babsia...), titers for strep, mycoplasma, and some viruses like Parvo, coxsackie and EBV are "popular." The link you posted is a very good place to start. Unfortunately, there are indeed many layers and triggers to peel away. For us personally, our most major player so far has been evidence of Celiac disease. We didn't find that until several years after our PANDAS/PANS journey began. The removal of gluten and dairy was like a night and day change for the better. It didn't "cure" us but it did indeed remove one layer. Point being, with PANS - many of us have different responses to different triggers -- or rather multiple triggers. You can start looking for some of these infectious triggers. Your immune workup would include an assessment of your overall immune status. Are you immune deficient? What is your total IgG and its subclasses, your IgA? Is your IgE elevated indicating possible allergy components? Please do check an ANA, a thyroid panel and perhaps a Celiac panel. For many of us a PANDAS/PANS specialist is/was a huge important step in beginning the journey toward understanding and healing. But we've had to additionally embrace the other facets of functional medicine on our own. Or we've needed the help of a functional medicine specialist. For those with lyme (and there are many), an LLMD is crucial. However, I would at the same time encourage you to understand that while we are on the cutting edge in understanding things like autism, PANDAS, PANS, OCD (and even bipolar, schizophrenia - the entire field of "psychiatry" is affected by such a wonderful surge in new information -- autoimmunity, methylation, microbiome, epigenetics....) there is still much more to learn. Thus, simultaneous cognitive behavioral therapy in addition to addressing the physical roots does help - most especially for us "older folks" - the adults on this board or those of us with teens.

The rationale from Jim Abrams regarding carnitine: "One unpublished study by Audhya of 400 children with autism found that about 1-2% had a severe behavioral reaction to fish oil within a few days, resulting in extreme behavioral problems. These symptoms disappeared within a few days after stopping intake. Blood testing revealed that these children had a carnitine deficiency (see section on Carnitine), which is needed to carry long-chain fatty acids into the mitochondria, and to transport short and medium chain fatty acids out of the mitochondria. Supplementation with low dose carnitine (about 200 mg/day) allowed the children to tolerate fish oil without any problem. Since the major source of carnitine is beef and pork, people who avoid those foods may want to start with very low doses of fish oil, and if there is a problem add a carnitine supplement or eat beef or pork regularly." I of course wonder why the large study is unpublished.... But, yes the vit D as part of the fish oil is definitely an issue. DS14 does react to just plain D as well.

There could be die off or other reaction to that particular antibiotic. Does Motrin help reduce symptoms?

Thanks @sf_mom! Yes the ammonia connection I am currently following. We do have confirmed gut dysbiosis and yeast on most recent stool study. And his homozygous 1298 - makes this a possible ammonia issue for him anyway in clearing ammonia. Parasite testing has been negative but I do plan to follow your lead and dig deeper. The "cycle" just seems to scream parasite.

@dasu - we have contrasts from prior flare to a recent normal week - (but have yet to do back to back comparison from the same "cycle." Next on the list. Hard to convince so many blood draws). We did note a very high IgE with one set of "flare labs" - no change in neutrophils, basophils, lymph et cetera. Recently onto an ammonia connection perhaps as in flare - BUN elevated and BUN/Creatinine also elevated despite normal creatinine. Had always just though "dehydrated" despite drinking but now think trouble with clearance due to genetic polymorphism and gut microbes. @babsmom- dasu's suggestions is a good one -- to do labs on your normal day and then on day 3-4 of your "flare week." See if anything is different.

Yes, I just responded to your post. It's very difficult to understand! If you figure it out - let me know ;-)

We have a very similar situation. Prior to puberty our son was classic PANDAS which then morphed to PANS - but flares were compulsions and brain fog and some hyperactivity. It was indeed switch like. They resolved with zithromax and were manageable. They occurred about 4 times a year. At age 11 we were symptom free for almost a year and a half. Then, in 7th grade, our son began monthly flares. Extreme anxiety, OCD, personality change, and severe slowing of processing speed. His cognition and speech processing would dramatically decline. He became like a little professor and though he wasn't depressed he would philosophize about the worlds end. Each time, we would see very swollen nasal turbinates and suprax would be added for sinus infection. Each time the flare would last about a week. It was our week from . After 7 months of monthly flares, we finally found that he had antibodies to gluten. His tissue transglutaminase was elevated. At the time he was on two antibiotics - not flaring - but not quite right either - though he could complete his work at school well. His IgG levels also were very low - his immune system was tanking. We removed gluten and dairy (dairy just because I had always suspected he was sensitive). We witnessed dramatic results! The flares stopped. His health improved. We were golden for a year! Sadly, in 9th grade this past summer, our flares have returned. We are on a 6 week cycle. His steep cognitive decline lasts for about 4-5 days - his OCD - about 7-10 days. He has some spaceyness coming out of a flare. Some rage on either end of a flare. He is frustrated, confused and feels powerless. He still struggles with sinus issues. His whole body is declining again. Like Nancy said, I believe in the cup theory. He can handle some toxins to the body. He can handle maybe a food dye here, and some dairy there. He can handle some exposure to virus here or maybe strep there. But when he is exposed to stressor after stressor after stressor his cup overflows. His body shuts down. He's not able to detoxify and he flares. Add puberty to that mix and the enormous energy that it takes to grow a body-- it's a recipe for disaster. Here is what we are planning: we are working with micronutrient therapy and methylation - to try to balance and strengthen his detoxification systems. We are working on gut health and digestive health as his flares do indeed come with profound constipation. We have just completed new rounds of stool studies and OAT and food allergy tests to widen our scope of treatment. We are adding digestive enzymes. We are also planning to see Dr. L in Feb who will no doubt send us to her ENT colleague. We know his sinus issues contribute to the problem. He has purple circles under his eyes when he flares as well. We are resuming CBT as past trauma plays a role. He feels a flare coming on -- and his past experiences get all wrapped up in the flare. We need him to accept that while we are doing everything to help him, he himself is not powerless. These kids are like onions and the layers need peeling and peeling. The cycling always leads everyone to say Lyme and parasites. So if you have Dr. J on board you should be in good shape to have that covered. You mentioned Duke. Feel free to PM me. We live in NC and have not been to Duke. Would love to know who you see. Oh lastly, I just wanted to share that I found online a man who had the same presentation -- every 6 week cycles- on and off like a switch. He had posted a an online letter when he was 16 because he wanted to help inform others. I tracked him down -- the wonders of facebook -- and he kindly responded. Today, he is a resident in medical school. His "cure" came in the form of gluten free/dairy free/sugar free, probiotics and treatment for lyme. Interestingly his symptoms started at age 12 as well.

I'm so sorry you are going through this AGAIN. I have no good suggestions but can absolutely relate to this horrific roller coaster. We've gone many, many months in "remission," only to have the flares return -- a few times this has happened. Its a complete gut punch that no one else would understand. I find myself broken more often than not when the flares return and it takes a while to gather the resolve to keep on going. Give yourself that time. The "I cant do this" is absolutely understandable. But you can do it. You did it before and you can do it again. And yes, the tension affects everyone and everything. My marriage, my younger son...I feel like a complete failure half the time. Like the rest of the world has this all figured out but I am missing some key piece of information that leads to a harmonious life. Living in an insane asylum? YES! When amygdalas are in overdrive -- everyone suffers. Just wanted to say you are not alone! Hang in for the journey!

Thanks! Today was the first I heard of the carnitine connection. It was a statement made by Jim Adams on the Autism Series link that is posted on this board a couple topics down. I have yet to look into this deeper but he was very convincing! Will look into the hemp oil. Thanks! Jim Adams, PhD Talk Title: How Diet and the Environment Affect the Gut Microbiome and Nutrient Status

Quick post to ask if anyone else has experienced this. DS seems to have increased anxiety/mood flux after fish oil. We discontinued it long ago. Today, heard a video saying that those who are low in carnitine, have reactions to fish oil within 1 week of ingestion (ours was more immediate). I have not yet done the further research but curious if others have seen that connection? And I'm not sure if the reaction is to fish oil supplements or just fish. This is on my mind this week - because we are in a more mild flare - and after some wild salmon -- his anxiety worsened.

I am very much enjoying these videos! Just wanted to thank you for posting!

Thanks to all! I appreciate your suggestions and comments and feel newly empowered to add a few more options to the toolkit!!! Nancy, as always your suggestions are spot on. Yes we've used greater dosages of melatonin in the past but felt like higher doses were not necessarily more effective. And we were concerned that the higher doses perhaps contributed to the associated fog. But perhaps its time to revisit that idea again. Thanks again everyone!

Hi! I know its been discussed A LOT but wondering if there is anything new in terms of tips or tricks. DS14 has severe insomnia when he flares. He literally fears not being able to sleep and worries and worries about whether or not he will. This is part PANS, part PTSD since insomnia has been a big player over the years. It typically is an early sign which then leads to a bigger dramatic spirall. Along with meditation, guided imagery (which is really hard to do when flaring), progressive relaxation CBT techniques...we've only had limited success with .5 Melatonin. But even that doesnt really work in a real flare. We've tried antihistamines. He has a paradoxical reaction to both benadryl and doxylamine. They hype him up. Another symptom in a flare is severe slowing of processing speed and memory - so I'd like to stay clear of any class of remedies that would make that even worse. Any magic pills out there?

We too have had elevated IgE during episodes. Allergies are a huge part of our particular picture. I would think an allergist would be helpful in determining the specific allergens. In our case, dust mites in addition to multiple food allergies are the culprit. We also have elevated tissue transglutaminase IgA - which indicates 95 percent specificity for Celiac. Sp removing gluten, dairy and above allergens were huge for us and got us to remission for quite some time -and we never did IVIG despite tanked IgG. Though, sadly we have started flaring again and are starting this process all over again now. Anyway my advice would be to look closely into the allergy component! Couldn't hurt.

Thank you both! Our middle school was very understanding without the need for an IEP in 6-7th grade. However we really didn't need much support during 8th grade because he was so much better and flares were infrequent. Now in high school, he is back to flaring every 6 weeks. To this point, I've been holding his hand during flares but it's impossible for me to continue like this. I cant imagine him taking an AP course at this point. You both offer great suggestions and HOPE! Thank you. I will meet with the counselor and discuss his needs first, then see about IEP's as well. I'm sure his teachers must be able to see what is happening 95-100s then crash, 95-100s then crash... I appreciate you letting me hijack!!! Thanks for the dose of hope!

Bigmighty can I hijack your post to ask how your son manages such a challenging course load during a PANDAS flare? My DS is freshman in high school taking all honors et cetera. But during a flare, he can really fall behind. He has insomnia, memory issues and difficulty processing along with the OCD et cetera for at least 7 days before emerging. What is normally an 100 becomes about 80 if he's lucky during the flare. When not flaring he is able to handle his course work easily. I guess I'm just looking for hope - as I see these posts about kids going off to college. Any tips? Did it get easier to manage as he adjusted to high school?