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new and hanging on by a thread

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Hi all

my 6 year old son has been diagnosed, i think...with pandas/pans. an explosion of symptoms began early summer. we went on a family vacation and everything was a level 10 out of 10. He was licking everything, biting objects, looking at fingers lined up, asking questions multiple times, concerned about his eating area, defiant, hyperactive, very angry and moody, and extremely anxious about being alone. We called his ped multiple times while we were gone, and the nurse just tried to say you're on vacation, maybe he's just adjusting. we knew something was very wrong. we saw her again when we returned, and she noted how different he appeared during the visit--on the floor, in constant motion, talking non-stop, and repeating things. she suggested counseling, as we have had many serious family stressors in the last year. i started looking online at information on tourettes and came across the pandas/pans stuff. he fit nearly every criteria. i also noticed dilated pupils were a symptom, which I remember seeing for months but didn't think much of it. same with urinary incontinence. he had about 6 daytime and nighttime episodes in 5 weeks time. he was out of school, so didn't notice much with writing. just that when I tried to sit down with him to do some schoolwork they sent home with kids to do for the summer, he refused and/or had a tantrum about not wanting to do the exercises. i scheduled an appt with dr k, who would be unavailable for one month. every day was/has been a nightmare and waiting to do nothing felt awful. i scheduled a ph consult with dr t who said he is "textbook" pandas. his bloodwork came back, and even though antidnase b titers were considered high, he thought pneumococcus was the triggering agent. he is on augmentin and biaxin right now. we saw a dr locally who refused to diagnose him with pandas (he won't acknowledge pans) since his strep titers were normal with a second round of bloodwork. we see dr k tomorrow.

as i think back to his last illness that he had, it was in march, over spring break. he was sick with fever for 6 days. other symptoms were a cough so bad it often made him gag/vomit, but it was nonproductive. dr thought it was viral. 2 weeks later I noticed differences in my son, and that's when i began emailing his teacher to ask if she'd noticed differences. i mainly noticed tics, like blinking and facial grimacing, and hyperactivity. she said she, too, noticed but didn't think it was too bothersome. when i picked him up from school, he was so angry, nearly every day, that i thought something had to be happening in school. again, the teacher confirmed nothing was happening, he seemed ok, although she could no longer put him with certain students to do work like she used to, and that he had troubles following directions, standing in line, and staying on the carpet during reading. this is from a teacher who, up to this point, said she wished she had 18 children like him in her class! my son even said he felt like something was "wrong" with him. then I recalled a class field trip at the end of May I went on with him, and came home and told my husband that something was not right. he was very obsessed over the school bus and couldn't participate in learning activities. i began looking up adhd things. but as i said before, it's as if he could qualify for 5-6 dsm-iv diagnoses in one month's time!

i've read some things here and feel very scared. it seems like something that never ends, or even gets better. i'm sure we'll be up against a decision on whether to try ivig or not. i've made an appt with a homeopath to begin treating, but i'm so scared to abandon traditional medical treatments. did i mention i have a healthcare background and am a scientist?? i really want to get at the core issue of the problem. i know everyone on here wants that too for their children. i'm just unsure how to go about it. i've never seen him so debilitated and i'm worried the next episode will keep him out of school. in fact i'm not sure how he'll fare with this upcoming school year, as he is now.

he's on day 8 of abx, dr t prescribed 10 days. i'm wondering about recovery, what that looks like. his mood seemed significantly better to me two days ago. yesterday was a "good" day too. he didn't get angry as much or as intensely. but today i had a doctor's appointment and he was haywire--screaming "uuuhhh!" because i asked him to sit down, squeezing me out of anger (while I'm holding my 9-mo old), unable to be still, talking nonstop to the provider who was trying to talk to me, grabbing exam gloves by the handful out of the box, licking objects, etc. I don't understand....I thought we were on the mend. Can anyone share what to expect with recovery? are there good days then bad days, or is it different? same with recovery after ivig? how many rounds do kids typically need? I've read with younger kids recovery might be quicker/easier...is this correct? and what if the offending trigger is viral, not bacterial? what is the course of action then? do kids get better? and from what i understand, bloodwork is neither confirmatory nor disproving, so why the emphasis on it? does it really offer much useful information? maybe i'm misunderstanding this whole beast...

i have many questions but will post later. i'm glad to have found a place to put ideas and questions out there.

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I'm so sorry to hear about our son.


You may want to get the pandas blood test panel from Moleculera labs. It measures autoantibodies, and indicates if your child may have success in treatment with immune modulating therapies. IVIG and steroids mainly, although some people are now using other therapies as well (cellcept etc) if you are scientific, you may enjoy downloading and reading the research papers on that site.


You will still need to look for any signs of infection. It isn't just strep - mycoplasma and Lyme, and other infections can trigger pandas as well. So people use bloodwork for figuring that out, as we'll to see if there are ways to improve their immune heath.


I would get in to see the best pandas doctor you can, as soon as you can. Kids get better, most of the time. My child is 90% better. Many kids are much closer to 100%. It looks like you have found both drT and drK- you are in good hands. Dr K usually does IVIG at a dies of 1.5. Most other docs do 2.0 ( and that is what the NIMH used on both their studies) just something to be aware of. But 1.5 seems to work- dr ms been doing this for a long time.


It is scary. I wish I had more words to comfort you, but I'm still here for a reason. My child is much better, but not all better.


My child had a similar presentation to yours. He ended up having chromic mycoplasma. He also does not make many pneumococcal titers- only 2 - (well he makes more now but 3 years ago when this started it was only 2).


Check out Moleculera.com for more on those tests.


Welcome to the forum. You will find lots of help and support here.

Edited by norcalmom
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Hello. I'm sorry that you are here, but you've found a great place with many people who are willing to share. It's been a while since I've posted on a regular basis, recently I've been checking in a couple of times a day. However, I can relate to your story a lot because my daughter was excelling academiclly and socially when she changed suddenly at age 6.


I don't think it's the younger children who do better with PANS/PANDAS. I think it may seem that way because early intervention is vital, and children who are diagnosed at earlier ages are getting treatment sooner.


Three times since 2009, my daughter has fully responded to monthly tapers of prednisone, and we have really only used antibiotics as prophylaxis or to treat actual strep (or very strongly suspected strep). She was diagnosed and treated within 2 months of our first noticing that something was wrong.


We are currently in an exercerbation and she is on her 4th treatment of prednisone. During her second exercerbation, I was told by her PANDAS doc that since she was diagnosed so early, we will probably be able to manage this with prednisone.


I've come to believe that for us, PANDAS, is managable. I realize that for many on these forums, their journey has been much more difficult. However, there are many recovered children whose parents don't come on these boards much at all. Most PANS/PANDAS doctors will say that the long-term outcome is very good.


As far as bloodwork is concerned, if you can confirm a triggering infection, then you will have a better chance at tailoring the correct treatment to eradicate that infection (if possible). How much testing and if you should get IVIG for your child are difficult decisions. They are also very individual and dependant on the uniqueness of your family situation.


It's very very hard being in the trenches right now, especially if it's your first experience with this. Having your child change so dramatically is difficult, but so many of us have seen our children come back, more than once.


Good Luck ((hugs))

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My son was diagnosed at 6, after a year of this. It was a very difficult time and I lost a ton of weight. It nearly did me in. Everyone here has been in your shoes. It can and it does get better with treatment. That may not seem like much help when things are so bad right now.


Eight days is not enough time to see any sort of major improvement. Hang in there. You are in good hands with Drs T and K. They have both seen my son and we've had IVIG with Dr K twice.


You seem to have caught this fairly early on and that's to your advantage. We've been dealing with PANS for nearly four yrs now. It's much more manageable now, although flares are still not fun, they are nowhere near as bad as they were before diagnosis.


Hang in there.

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I'm not posting as often anymore, as I'm rediscovering "normal". But there was a time I lived on this forum and couldn't have ever made it through without the support and insights of the people here. My son also got sick at age 6. In a few weeks, he turns 11 and is in a better place than I have ever known. Even better than pre-Pandas/lyme because he likely had issues when he was sick as a toddler but I'd never heard of Pandas back then, so it was written off as behavioral. Today, he had his annual eye exam with our behavioral optometrist. She was blown away by the kid in her office today. He has grown into a funny, engaging, warm young man - a far cry from the huddled ball in a psychotic panic under our coffee table in 2008. It was a long, hard, expensive road. But kids do get better. You will get your son back. Do understand it won't be like flipping a light switch, he won't recover as quickly and dramatically as he fell ill. But you can - and will - get him back.


You ask about why all the blood work and as the other posts have said, it's to try to zero in on your son's trigger(s). Antibiotics - often 30+ days or even years of treatment or prophylactic doses - are the first line of treatment. But abx need to be selected based on the trigger. You don't say where you live, but the biggie infections many here deal with are:



How to treat depends on what you're fighting. Dr K is a big advocate of IVIG and it helps many. But it doesn't help all and it's effectiveness is highly individual. If you don't eradicate the infection before doing IVIG, remission seems more elusive. So knowing thy enemy is important. If you live in an area where lyme is a known problem, don't blow it off by saying you've never seen a tick. Dr K is not one to pursue lyme testing and I'm not trying to suggest everyone has lyme. But it won't be part of his focus and if other infections don't seem likely, do put this on a sticky note to come back to if need be. Also be sure to use the archive feature whenever you want to investigate a new idea - there's a decade of wisdom here. If the search feature is too cumbersome, go to google or your favorite search engine and type the topic + "acn" or "latitudes" and you'll often get hits from old discussions.


In addition, some kids, especially those who might've been "quirky" pre-illness, have methylation problems. Genetic anomalies that prevent the methylation and transsulfuration and krebs cycles from working at 100%. So after, or in addition to, fighting infection, some of us have seen lasting improvements from addressing vitamin/mineral deficiencies and imbalances. Some swear by homeopathy and some haven't seen success with it. You find what works for you and eventually you start to find your way again.


There's no one path back to wellness. But do know that most of us here have been, or still are, in your shoes. We totally get the rages, the irrational, paralyzing fears, the cognitive loss, the personality changes, the sense of having your world turned upside down, the stress on our marriages and the price paid by siblings. But kids do get better and your will too. Welcome to the forum.

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Thank you everyone for posting so quickly. I should mention that this isn't likely his first episode. Like you, LLM, there have been periods in his life where something just wasn't right. The first was at 20 mos. he regressed. Stopped talking, had a flat affect, no interest in toys or us, lined things up, etc. I took him to three doctors and the ER as it seemed I was losing him. He had pharyngitis and diarrhea, kept saying "head broke." As you can imagine, it was one of the most terrifying things I've faced. He somehow recovered two weeks later. He kept having times where his behavior just wasn't right. We had him evaluated for ASD but dr said he's not on the spectrum. He seemed to have troublesome periods, then would improve. We began to think this was just his normal development. This episode is by far the worst and most debilitating. So technically, nicklemama, we've likely been dealing with this for years too, right? Or is the first episode considered to be when it becomes debilitating?

About labs...dr t ordered 24 blood tests, including mycoplasma (both IgM and IgG neg), lyme neg ( I see one was present out of 10 IgG-- the IgGp 41Ab), bartonella, babesia, and erlichia ( all neg). Vit d was low, antidnase b strep high at 196, and several strains of pneumococcal were present and high. I'm not really sure I understand how he concluded that pneumococcus was the trigger. I'm still wondering...what if the trigger for him is viral? How do we proceed then?

LLM, can you tell me more about your behavioral optometrist? And how was it determined your child has methylation issues?

And a general question...when a child is receiving treatment of any kind, how does one know that it was effective or whether the flare is just fading? Theoretically they do resolve eventually without intervention correct? This is what our ped said when I asked about the possibility of pandas. And this was why she said she wouldn't treat it.

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I'm so glad you found this place. I'm fairly new myself here dealing with two kids that have PANDAS. We now realize DS age 8 has had it since 2010 and Dd since last June although both were finally diagnosed this May when things became very debilitating.


It sounds like you are really taking the bull by its horns and getting to the great PANDAS specialists. It takes some of us years to get that far. I realize you have been dealing with this for years as well, thank goodness you are on the right path now to getting your child help.


To answer your question from my own point of view you asked how do you know if a treatment is effective or its just the symptoms waxing and waning. While its true that eventually And supposedly they will outgrow this when they hit puberty, some do not, as you will find young adults and even some older adults on this forum that are suffering. All we can do is try our best to pursue the infections that are causing our children's suffering. To do nothing would be unthinkable. I can tell you from personal experience that when you find the right treatment things can get better fast, even though they might not stay that way forever. When you try the wrong thing they certainly take a turn for the worse and you will know that also. Then there are those times they seem to take a turn out of the blue and we all scratch our heads. It's just par for the course. There are many things that can be helpful in combination. We are doing CBT with our older child, treating with abx, supplements as needed, Motrin, Zoloft and intunive. The last two don't treat the underlying condition but sure make life more bearable for our whole family, especially our son. DS is too going for many of those supports but she is in OT which helps her a lot.


Trust your mom instincts and keep up the great job.

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About labs...dr t ordered 24 blood tests, including mycoplasma (both IgM and IgG neg), lyme neg ( I see one was present out of 10 IgG-- the IgGp 41Ab), bartonella, babesia, and erlichia ( all neg). Vit d was low, antidnase b strep high at 196, and several strains of pneumococcal were present and high. I'm not really sure I understand how he concluded that pneumococcus was the trigger. I'm still wondering...what if the trigger for him is viral? How do we proceed then?

LLM, can you tell me more about your behavioral optometrist? And how was it determined your child has methylation issues?

And a general question...when a child is receiving treatment of any kind, how does one know that it was effective or whether the flare is just fading? Theoretically they do resolve eventually without intervention correct? This is what our ped said when I asked about the possibility of pandas. And this was why she said she wouldn't treat it.


I'm glad to hear Dr T ordered so many labs. The band 41 you see on the lyme test isn't unique to lyme. It means your son was exposed to and developed antibodies against some bacteria that has a flagella - a tail used for motility. Lyme spirochettes have a flagella, but so does H Pylori, syphillis and others. I don't want to side track your post onto a lyme discussion but I do recommend reading the articles in this thread http://www.latitudes.org/forums/index.php?showtopic=10804 because the test Dr T orders is not a good way to rule lyme in or out. My son was tested by this test (different Pandas doctor) and was completely negative. Six months later, after a bad one-time IVIG experience, we re-tested for lyme using Igenex lab and my son had 5 bands light up - 4 that were never tested using the standard lyme western blot from Quest. Not dwelling on lyme - just don't want you to dismiss it entirely. By all means, pursue/treat any other infections that turn up. But if you can't hold remission, keep lyme in mind. My son had positive strep a number of times and he definitely had/has Pandas, but lyme was underneath it all, keeping him from getting permanently well.


In theory, your pedi is right - Pandas symptoms do resolve - but only if you eradicate the triggering infection. So if you have mycoplasma or lyme or some other chronic infection, ten days of abx isn't going to kill the infection and it will remain, keeping the pot stirred indefinitely until the body - usually with some major help from longer term antibiotics and maybe other medical interventions - clears the invader. To dismiss Pandas casually, as if it will resolve like a common cold, is naive.


If your son's trigger is viral, there are a number of anti-virals you can use - some prescritption, some herbal, some OTC supplements like l-lysine. The recognition that viral triggers and bacterial triggers beyond strep can bring on an episode is the reason the disease has been re-named PANS, taking the focus off of strep as the sole culprit.


Your question on how you know if something is working or if things are just resolving on their own - for our kids, many of whom have under-performing immune systems - they don't just resolve on their own. They resolve once you get rid of the infection. So when you see improvements, it's generally the treatment that's working, helping the body recover. You should also be aware of the herxheimer reaction. Sometimes, if the bacteria you're fighting releases toxins as it dies - e.g. with strains of strep that produce scarlett fever, yeast, lyme et al - the die off can make it seem that your child is getting worse, not better. People here generalize the term 'herx' to discuss any general "worse before better" reaction. Sometimes getting worse doesn't mean you're on the wrong path. It can mean you're killing things faster than the body can handle, de-tox wise. So slowing down your rate of attack or supporting with supplements can help lessen the reaction. Using anti-inflammatories is also extremely helpful and regular dosing of ibuprofen or a period of prednisone can sometimes be amazing. (for whatever reason, ibuprofen is remarkably more effective than any other NSAID for our kids).


Regarding the methylation issue - my son underwent a number of Pandas treatments - long term abx, T&A, prednisone tapers, plasmapheresis, IVIG, lyme treatment using combintations of abx - and he would get better but not completely better. So each time, we had to dig deeper. After his lyme diagnosis, we worked with an LLMD (lyme literate MD) who looked at vitamin deficiencies. We found a genetically caused zinc/B6 deficiency and when we started supplementing with zinc/B6 it was like someone turned on a light switch. My son made huge gains. We then went on to look at other genetic issues - such as the ability to use Vitamin D effectively, the ability to degrade neurotransmitters at the proper rate, etc. My daughter, who could've easily gotten a bipolar dx from any pyschiatrist, had a genetic anomaly on a gene known as MTHFR which reduced her ability to use folate (vitamin B9) which in turn gets turned into SAMe, serotonin and dopamine. When we started supplementing with a special form of folate (methylfolate) in the right dose for her, her bipolar moods went away. So we then went on to test the whole family using a genetic lab called 23andMe and I've been able to tailor supplements that have helped my kids regulate their moods in a way that's amazed those who knew them in the bad old days. It's possible that pre-existing methylation problems pre-disposed them to neuropsych symptoms when the body became overwhelmed with infection and this is what weakened the blood-brain barrier and enabled the autoimmune Pand response. So by working around their genetic hurdles and supportuing their guts with the right balance of probiotics and diet, I'm trying to fortify the fort and make relapse less likely and less damaging if it does happen.


Sorry if I've tossed too much out at one time. Not trying to throw the kitchen sink at you. Sometimes, once you kill the infection, kids return to baseline and can maintain a good place. My kids had other things that kept them from being like those kids who bounced back quickly from an episode. So keep focused on the infection for now. But don't get discouraged if your son isn't an immediate success story. Know that even if you have to dig deeper and become an expert on things you never dreamt you'd have to know, you can find answers and get your son well.


oh - re: the behavioral optometrist - my kids both have convergence insufficiency - a type of "lazy eye" that gave them reading, coordination and academic problems. It isn't directly related to their Pandas issues. They wear bifocals and do eye exercises to reduce the CI. I mentioned it in my first post because the optometrist has worked with my daughter for the past year but has only sporadically seen my son, as we couldn't afford vision therapy for both at the same time. So she was really struck by the contrast between the boy she met last summer and the boy she saw yesterday. The story was meant to highlight the dramatic gains my son has achieved in the past year.

Edited by LLM
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You are correct, you've likely been dealing with this longer. We have been dealing with it longer too. We suspect it started at 3.5. He had episodes that he got over and returned to full function.


Your ped is sort of correct, they seem to get over each episode. My experience is each time, the episode get s worse when untreated, goes longer and eventually, the child no longer returns to full function. Their baseline behavior gets higher. The big one caught our attention and we knew something was drastically wrong but no doctor knew exactly what it was. Some told us aspergers, sensory processing disorder, etc.... He did get better but never was the same. The next one never really resolved itself and 7 months later, he was diagnosed by Dr T.


Dr K thinks strep always starts the PANDAS and after that any infection can flare it. You may not have been aware of the initial episode with strep. My son has never had a known strep infection but he had ear infections and sinus infections, probably strep related but never tested for strep.


We have since discovered methylation issues in our son and are treating that. He also has been discovered to have ehrlichia, anaplasma and babesia infections from a tick bite even though we've never known him to have been bitten by a tick.


It's been a long road, but our son, now 9.5, is doing much better.

Edited by nicklemama
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HI, you have received a lot of good information here...so not much to add. Except to say that your son sounds identical to my son who was diagnosed with Pandas age 6 as well. He is now 7 1/2. I would recommend going to IVIG as soon as possible if Dr. K is convinced about Pandas. I recently read a collaborative report showing the outcome of 200 Pandas kids from various studies. It showed how the vast majority who had IVIG within their first year of over the top symptoms, improved remarkably with IVIG and did not have to have a second. I know that you are able to recall symptoms in retrospect, but it is important to know that there is a difference between subtle symptoms in the past (because they can always be found), and the first "major" episode, typical around age 6. So my point is, I think I would push for the IVIG as soon as possible. My son just had his first IVIG 8 weeks ago, (timeline: 15 months after his first Major episode at age 6). He seems to be textbook as far as what Dr K said to expect. He is doing really really well but 12 weeks of some wax/waning is still expected. We are keeping our fingers crossed.....Best of Luck!!!!

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This is so helpful everyone.

LLMD and nicklemama...I'm interested in figuring out if there are methylation issues. Was it your LLMD that ordered the tests for determining this? Is it blood or saliva? And then who specifically guided the treatment? I'm in the Midwest.,I've just put a request in for a LLMD on the ilads website.

Qannie 47... Can you share more about your experience w ivig? What did dr k say to expect? Can you also send a link to the report you refer to? Thx :)

We are on our way right now to dr k. Emotionally there is so much to write about. I've never experienced these emotions so intensely for such a prolonged period before. Guilt, sadness, confusion. Anger. But I can't go there right now...

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Our LLMD ordered my kids' MTHFR test (blood test thru regular local lab, paid for by insurance). I then went on to order 23andMe for my whole family (spit tests) - $99 for first kit, $79 for additional kits ordered at same time, but not submitted to insurance - paid out of pocket. No doctor's signature required. But do be educated about privacy and insurance implications of any genetic testing regardless of whether you pay or run it thru insurance.

Here are some articles that give some background:








There are some support sites - mthfr,net, mthfrsupport.com and a facebook page mthfrsupport that can help you wade thru. But like Nicklemama says, few doctors really understand how to customize methylation advice based on individual results. It's in its infancy, so we share links and bounce ideas off each other but most of us are doing educated trial and error with supplements to figure out what works for our specific family members.


I hope your visit went well. I'm sure your head is swimming. You may want to start a symptom chart to track how various treatments help or don't help. I have a sample I can send you if you want. Just send me a PM (click on my user name and hit "send me a message" and send me your email address. I can't send attachments in the forum's messaging system.).

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Hello-Sorry you for what you are going thru but glad you have some good dr. and forum support. :)


My ds15 presentation was similar but treatment has been a bit (ok maybe a lot) different than most on here as we have gone the natureopathic route (abx, supplements, homeopathic tinctures etc.) which was the best for us as we had a mold toxin component that had to be dealt with as well.


Our dr. treats the whole body not just any one infection. Two things that my ds has been on since day 1 have been a probiotic (one without strep in it-for stomache support-1 hr. after/before abx), detox-getting rid of heavy metals, herbicides, insecticides etc. ( chia seeds [easiest to start], chlorella [hard to digest]; milk thistle; charcoal; clay; etc.), and gluten-free [reduce inflammation]. Any supplements are very high quality in order to keep heavy metals and insecticide etc. away from child. These are all very easy to begin right away and have been extremely helpful in my son's treatment.


Also, for how you are feeling right now--can totally relate. It seemed at first when all this happened I went thru the same feelings as if my son had died, which was horrible, but now 3 yrs. later, I can see how it has made him a stronger and better person and am greatful for that. This illness has changed our whole family and it has been difficult, but it has changed all of us for the better. :)


Best wishes on your healing journey!

Edited by JuliaFaith
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You have gotten some wonderful advice from some very knowledgable people. As you can tell there are many ways to approach this issue. My advice is to read and learn as much as you can and decide which approach is best for you. Nailing down the infectious trigger is helpful so that you can address that while using what ever approach you decide. Many times (as you have already been told), there is more than one opportunistic infection at play.


We have been fighting PANS for 11 years. We have 3 children all at different stages and have used many different methods of treatment. The one thing that all infectious processes have in common is the cytokine cascade. This is one of the things that causes the inflammatory process which results in many of the problems our children have. What has helped my daughter most has been limiting the release of cytokines. Certain cytokines are specific to strep, others to lyme, mycoplasma, bartonella, etc... but many are released in all of these infections. There are several different herbs that can help with cytokines.


We also have done the genetic testing and are treating several different genetic issues, methylation etc... My daughter has had 2 IVIG's and she has been on antibiotics for 2 years. I wish I could tell you there was one specific thing that will help you but most likely it will be a combination of medical treatments, antibiotics, herbs, diet, genetics / methylation and behaviour therapy.


The good news is you are in the right place to get help for all of that. There are wonderful supportive people here who can help you. Stay in touch and let us know how things are going.



Edited by Dedee
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