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Or maybe your DS just eats better than my DD and he gets more of what he needs from his diet. Maybe DD has a deficiency that makes NAC not work well for her. Just tossing spaghetti at the wall to see what sticks.

 

Well, I can say for sure that my DS eats very well! :P So much so, that I fear for our grocery bill this summer when he's home more than he's at school! Only thing he's less than thrilled with ingesting is something green that's neither asparagus nor tempura green beans! Fortunately, though, he doesn't balk at a "green foods" supplement I give him from Trader Joe's, and another mom here turned me onto throwing a handful of fresh spinach into fruit smoothies, and he doesn't balk at those, either. So I'd venture to say that he gets a pretty good, balanced diet from meals.

 

I'm sure you're right . . . that it could be as simple -- or complex -- as a variation in deficiencies or lack thereof. I guess the under/over-methylation thing is sort of an "easy reach" for an explanation for me. Just wondered if there might be an anecdotal corrallary here among our group in that respect. :blink:

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I recently posted regarding the fact that seven weeks of Zithromax (200 mg per day for MycoP) seemed to have no affect on DS5's chronic sinusitus, tics and OCD. But shortly after that post, the nose cleared, the tics vanished and the OCD (excessive handwashing for fear of breaking toys with dirty hands, etc.) has greatly diminished. A week or so before this, we incorporated two new things into DS's regimen: Cysteplus (NAC -- 1 500 mg capsule per day) and essential oil of oregano (applied to the soles of the feet each night.) This prompts me to wonder if the Cysteplus may have eradicated a biofilm in the sinuses or adenoids (he has huge adenoids -- 80% blockage -- being removed, along with tonsils, next month) which allowed the Zithro to finally do its job. Oregano is also extremely antimicrobial. Anyway, we have decided to discontinue the Zithromax in order to see exactly what kind of role it has been playing and run labs in a week or so. It's tough to stop something during the good times, but we hope this will ultimately help paint a clearer picture of the situation. Thanks for posting this article; it appears at just the right time for us!

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JAG10, my daughter is very verbal and very social. Yet she struggles with social issues with kids because she doesn't recognize social cues and can't seem to stop herself from taking control of the conversation. She is not good at the "listening" aspect. I really think there is some OCD element involved.

 

A perfect example occurs in restaurants. We have told her over and over that it is fine to say "hi" and be nice to a waitress but she will start a conversation with them and talk and talk and talk. She is definitely trying to control the situation. At first people think it is charming but if we don't stop her, they quickly realize there is a problem.

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Great Question! I am so frustrated about this. Can't get Dr. Greenblatts office to call me back (he is having some office staffing issues) I can't get into Dr. Buie from Mass General until the end of July. (He is the big GI Dr. who also is a DAN Dr. )

Minimaxwell, what is the doctor going to do to address the MTHFR issue?

 

Would love some help on this one please. I have no idea what to do... Also , would you suggest we all get testing in the family?

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Buie is very supportive of DAN but he's not a "DAN doctor". You won't find a DAN doctor affiliated with a major teaching hospital like MGH. Did you try scheduling him at Newton-Wellesley? Or get on his cancellation list? For treating MTHFR you really need to see a DAN or integrative doctor.

 

Great Question! I am so frustrated about this. Can't get Dr. Greenblatts office to call me back (he is having some office staffing issues) I can't get into Dr. Buie from Mass General until the end of July. (He is the big GI Dr. who also is a DAN Dr. )

Minimaxwell, what is the doctor going to do to address the MTHFR issue?

 

Would love some help on this one please. I have no idea what to do... Also , would you suggest we all get testing in the family?

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I'll put myself out there for criticism on this one, but I'm going to do it anyway. For my DD, addressing methylation was a huge piece of her on-going recovery. However, while our LLMD supports us, orders follow-up blood work to check on progress and I run plans by him, I have to say that most of the things we've done to address her MTHFR and the rate at which we've increased doses have been largely on my own. I did an awful lot of research and had the benefit of having managed 18 months of herxing and integrative lyme treatments under my belt. So I didn't feel like a novice.

 

But finding a doctor who's going to know how to help once the MTHFR results may not be easy. If you have a doc who has experience, certainly follow their guidance. But if you find yourself with a doctor willing to humor you and order the test but not knowing what to do with the results, I don't think you need to spend $600 on a consult with yet another specialist who's 6 hours away. I know a lot of people will take issue with this. But IMO, not addressing this because you can't manage adding another doctor to the team is worse than trying it on your own. You may get an unpleasant herx-like response if you go too quickly or if there are other undiagnosed issues.

 

Ignoring all other issues your child may have (low zinc, high copper, yeast, infection...), then for the C677 mutation, I added 200mcg of methylfolate once a day for about 1-2 weeks. I bought Yasko's methylfolate drops so we could start at such a low dose. I put 10 ml water in a medicine cup and added 1 drop of methylfolate. Had DD drink it with her morning meds. We then moved up to 2 drops. Managed mood swings with motrin and/or charcoal. Then we moved up to 3 drops (800 mcg) and added 1000 mcg methyl-B12. We waited 2-3 weeks before taking each step and delayed if there was some sort of behavior upswings. That's it. That's what we're doing to cope with the MTHFR C677 mutation.

 

Yes, we have other issues like high copper and pyroluria that I had help with from our LLMD. But if the MTHFR is your only issue, or if you're trying to decide between out-of-pocket IVIG with a doctor or first pursuing MTHFR work-arounds on your own, I'd definitely risk slowly adding methylfolate to a daily regimen - even without a doctor on board - before deciding something more agressive was the only way to modify behaviors. Not to mention that MTHFR has long term health ramifications if untreated.

 

I'm all for working with an experienced doctor but I'd hate to make it sound like treating MTHFR is so difficult or risky that it can't be done if you can't afford an additional doctor you don't already have. If you do have an LLMD or integrative - absolutely get their input first. But between Yasko's videos and book and reading Rich Van Konyenberg's papers, I felt comfortable tackling this on my own. (for those with A1298 - read the above resources - the methylfolate drops aren't (the only?) thing needed for the A1298 mutation and I don't have direct experience).

 

Ok - my garbage bag poncho is on. Toss tomatoes if you must.

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Laura, I agree that it may not be easy finding a doctor who understands how to treat MTHFR mutations (although many integrative or DAN doctors do) and I agree it can get costly. However, I have to respectfully disagree with your suggestion that parents should treat on their own without the guidance of an experienced doctor. There is very little I disagree with you on, but I think this is potentially risky given the complexity of so many children of parents on this forum. Not every parent will research and pour through studies and journals the way you and some other parents do. And not every parent will try the proper supplements slowly and methodically. Furthermore, there is a different treatment for the different genotypes. Plus, without knowing what other genetic mutations the child has that may interact with the methylation process (COMT, for example), you don't have the entire picture. So I encourage parents to work with a DAN or integrative clinician who understands how to treat MTHFR mutations. Or at least, go online and order the nutrigenomic testing from Amy Yasko, PhD and you will receive from her lab a report with recommendations for treatment. You can then join her forum for guidance.

 

No tomatoes here, but I had to speak up.

 

I'll put myself out there for criticism on this one, but I'm going to do it anyway. For my DD, addressing methylation was a huge piece of her on-going recovery. However, while our LLMD supports us, orders follow-up blood work to check on progress and I run plans by him, I have to say that most of the things we've done to address her MTHFR and the rate at which we've increased doses have been largely on my own. I did an awful lot of research and had the benefit of having managed 18 months of herxing and integrative lyme treatments under my belt. So I didn't feel like a novice.

 

But finding a doctor who's going to know how to help once the MTHFR results may not be easy. If you have a doc who has experience, certainly follow their guidance. But if you find yourself with a doctor willing to humor you and order the test but not knowing what to do with the results, I don't think you need to spend $600 on a consult with yet another specialist who's 6 hours away. I know a lot of people will take issue with this. But IMO, not addressing this because you can't manage adding another doctor to the team is worse than trying it on your own. You may get an unpleasant herx-like response if you go too quickly or if there are other undiagnosed issues.

 

Ignoring all other issues your child may have (low zinc, high copper, yeast, infection...), then for the C677 mutation, I added 200mcg of methylfolate once a day for about 1-2 weeks. I bought Yasko's methylfolate drops so we could start at such a low dose. I put 10 ml water in a medicine cup and added 1 drop of methylfolate. Had DD drink it with her morning meds. We then moved up to 2 drops. Managed mood swings with motrin and/or charcoal. Then we moved up to 3 drops (800 mcg) and added 1000 mcg methyl-B12. We waited 2-3 weeks before taking each step and delayed if there was some sort of behavior upswings. That's it. That's what we're doing to cope with the MTHFR C677 mutation.

 

Yes, we have other issues like high copper and pyroluria that I had help with from our LLMD. But if the MTHFR is your only issue, or if you're trying to decide between out-of-pocket IVIG with a doctor or first pursuing MTHFR work-arounds on your own, I'd definitely risk slowly adding methylfolate to a daily regimen - even without a doctor on board - before deciding something more agressive was the only way to modify behaviors. Not to mention that MTHFR has long term health ramifications if untreated.

 

I'm all for working with an experienced doctor but I'd hate to make it sound like treating MTHFR is so difficult or risky that it can't be done if you can't afford an additional doctor you don't already have. If you do have an LLMD or integrative - absolutely get their input first. But between Yasko's videos and book and reading Rich Van Konyenberg's papers, I felt comfortable tackling this on my own. (for those with A1298 - read the above resources - the methylfolate drops aren't (the only?) thing needed for the A1298 mutation and I don't have direct experience).

 

Ok - my garbage bag poncho is on. Toss tomatoes if you must.

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I won't throw tomatoes either but I cannot recommend going it on your own. My DS is being treated by a biomedical doctor. If you are looking for help w/ this, seek out your local ASD (autism) organization for recommendations for biomedical doctors in your area. These are not the same as DAN doctors. It does not have to be expensive. DS's biomed doctor requires payment up front but my insurance is reimbursing me for the visits. I'm only out the 20% deductible and the cost of the supplements. The B12 shots are covered by insurance.

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Thanks Nancy,yes we are on at wait list to see Dr. Buie in Newton-Wellesley, I am supposed to hear back from them tomorrow to see if they can see us sooner. What is the difference in seeing him there? I did not realize he is not DAN> Really hoping he can figure out the Pancreatitis piece of this for us.I need to find a dr. local to help with the MTHFR--too much $$ and time off to travel to other Dr.'s (even though Dr. Bock sounds amazing) Any other suggestions. Will the genetics team at MGH know how to treat this?

Also, thanks for everyone chiming in ,we appreciate everyones help,escpecially those who know their replies might generate some heated debates.

Buie is very supportive of DAN but he's not a "DAN doctor". You won't find a DAN doctor affiliated with a major teaching hospital like MGH. Did you try scheduling him at Newton-Wellesley? Or get on his cancellation list? For treating MTHFR you really need to see a DAN or integrative doctor.

 

Great Question! I am so frustrated about this. Can't get Dr. Greenblatts office to call me back (he is having some office staffing issues) I can't get into Dr. Buie from Mass General until the end of July. (He is the big GI Dr. who also is a DAN Dr. )

Minimaxwell, what is the doctor going to do to address the MTHFR issue?

 

Would love some help on this one please. I have no idea what to do... Also , would you suggest we all get testing in the family?

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I think I understand what LLM is saying. I have two children with MTHFR (waiting for results on the third). I think it is dangerous to just allow ourselves to be guided by physicians who think they understand the mutation and how it should be treated but in reality their understanding is very limited. I have gotten conflicting recommendations on how to treat my kids based on this polymorphism. I actually had one provider tell me to I should start my child on 5mg of methyl-folate immediately. WHAT! Well one part of that is right. They should take methyl folate......The only thing that has been consistant is that each provider is certain that they know how to treat MTHFR. In reality, very few have a TRUE understanding of the extreme complexity of the methylation cycle. If you do find a physician with a true grasp of methylation, then by all means we should value that judgement over our own. However, if the physician doesn't have that expertise, then their judgement is know better (maybe even worse), than a slow and simple approach such as LLM is suggesting.

 

I am certainly no methylation expert. However, I am reading and learning as much as I can every day and trying to take the "do no harm" approach. I have seen positive results with low dose methyl folate and small amounts of B-12. We have an appointment with an LLMD in July and I am hopeful that she will be able to guide us further. We still have far to go.

 

Most everyone here has been to enough doctors in search of help for their children's PANS to know when you are in good hands. It comes back to that comfort level with your provider and your Mommy gut. Just do what feels right in your situation. If your feel your provider has a good grasp of the situation, you are lucky and should go with it. If you get that "hmmm, I'm not so sure" thought while they are explaining things.....back to the drawing board. JMHO.

 

Dedee

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I think this thread is morphing a bit, but that's okay . . . it's still a valuable discussion. -_-

 

I can appreciate the perspective of those who hold fast to a belief that having sound medical advice and guidance is not just key, but necessary. And I envy each one of you who's been successful in finding that doctor -- or set of doctors -- to help you along this path. Because I think that's rare.

 

I live in the third largest metropolitan area in the country, and there's even a "PANDAS doc" in my immediate area. But 9 years ago, when my DS's first symptoms appeared and I found PANDAS through some internet research, I couldn't get ANYONE to listen to me or help me; I hit the same walls 1.5 years later, when he had what I now know was his second exacerbation. And still now, I can find agnostics, I can find moderate-but-conservative "believers" who adhere very closely to Swedo's original criteria and treatment recommendations (which, by the way, still more or less denounce long-term antibiotics, unless she's said something new I haven't heard), and I can find a humongous load of doctors who are downright nay-sayers and send you straight to the psych department.

 

The one respected DAN! in the market has a 6-month waiting list, does not accept insurance, and will neither serve as your child's primary care physician nor be responsible for consistent coordination with your regular pediatrician. The "PANDAS doc," similarly, is so over-booked and understandably intent on maintaining his primary focus that, beyond occassional coordination or conference with a willing ped, you're still stuck trying to "piece-meal" your child's care. Since at least a good portion of our children's issues stem from an autoimmune issue, I find it troubling that I can't find one doc to step up and monitor/coordinate the whole picture since colds, flus, other viruses, allergies, etc. are all immune-related. And then you add in something as "cutting edge" as methylation . . . well, I've seen more than a few eye rolls during our hosts of appointments over the last 3 years. <_<

 

So, I've lost the faith. I have next to no faith in the established medical community. I believe in and trust this doctor to a degree, and that doctor to a degree, but I can't trust that any one of them is really minding the big picture. That's my job, apparently, whether I have any medical training or not. And . . . be honest . . . how many among us "use" doctors, sure, but those very doctors are taking their leads from us? Granting us prescriptions or assenting to trying this, that or the other supplement based on information/documentation we bring them?!?! Time to own our own power, people! :P

 

So like LLM, I will endeavor to do right by my child, and that doesn't necessarily equate to taking him to see a different doctor every day of the week in order to get all the answers we need, and it doesn't necessarily equate to my sublimating my gut instincts or what I know experientially to be true in terms of my kid because it doesn't fit some medical school box. It means I study . . . sometimes more and harder than I did in my entire college career. It means I read . . . sometimes copious amounts of material. It means I listen to many (if not most) of you who have lots of experience and ideas to offer. It means I sometimes implement the use of supplements or therapies that no doctor has specifically prescribed but for which I have lots of information and background and good reason to think they might be helpful for my DS.

 

And honestly, yes, I've made mistakes. SamE was a mistake for him. Digestive enzymes were a mistake. B12 was a mistake. But I have to say that those mistakes pale in comparison and magnitude to the mistakes people with medical degrees have inflicted upon him over the years: ignoring PANDAS altogether, pumping him full of anti-psychotics and SSRIs, increasing dosages when they should have been decreased. And, thanks to many, many wonderful people here and throughout the PANDAS community, we've had far more success than failure and most of that has been up to us. Had we left it all up to the docs . . . even the biggest believers and treaters among them . . . I feel certain we wouldn't have arrived to this good place we're in now. It's just that none of them are as invested, as present, as experienced, as we are as 24-7 parents. So, I'll continue to seek medical consultation and continue to hope for an open mind and open ears, but I'm not going to wait on them to "get it together," or expect them to make every supplement call, along them way. I just don't feel that's very realistic.

 

Got any room for a friend under that garbage bag poncho, LLM? :P

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I think this thread is morphing a bit, but that's okay . . . it's still a valuable discussion. -_-

 

I can appreciate the perspective of those who hold fast to a belief that having sound medical advice and guidance is not just key, but necessary. And I envy each one of you who's been successful in finding that doctor -- or set of doctors -- to help you along this path. Because I think that's rare.

 

I live in the third largest metropolitan area in the country, and there's even a "PANDAS doc" in my immediate area. But 9 years ago, when my DS's first symptoms appeared and I found PANDAS through some internet research, I couldn't get ANYONE to listen to me or help me; I hit the same walls 1.5 years later, when he had what I now know was his second exacerbation. And still now, I can find agnostics, I can find moderate-but-conservative "believers" who adhere very closely to Swedo's original criteria and treatment recommendations (which, by the way, still more or less denounce long-term antibiotics, unless she's said something new I haven't heard), and I can find a humongous load of doctors who are downright nay-sayers and send you straight to the psych department.

 

The one respected DAN! in the market has a 6-month waiting list, does not accept insurance, and will neither serve as your child's primary care physician nor be responsible for consistent coordination with your regular pediatrician. The "PANDAS doc," similarly, is so over-booked and understandably intent on maintaining his primary focus that, beyond occassional coordination or conference with a willing ped, you're still stuck trying to "piece-meal" your child's care. Since at least a good portion of our children's issues stem from an autoimmune issue, I find it troubling that I can't find one doc to step up and monitor/coordinate the whole picture since colds, flus, other viruses, allergies, etc. are all immune-related. And then you add in something as "cutting edge" as methylation . . . well, I've seen more than a few eye rolls during our hosts of appointments over the last 3 years. <_<

 

So, I've lost the faith. I have next to no faith in the established medical community. I believe in and trust this doctor to a degree, and that doctor to a degree, but I can't trust that any one of them is really minding the big picture. That's my job, apparently, whether I have any medical training or not. And . . . be honest . . . how many among us "use" doctors, sure, but those very doctors are taking their leads from us? Granting us prescriptions or assenting to trying this, that or the other supplement based on information/documentation we bring them?!?! Time to own our own power, people! :P

 

So like LLM, I will endeavor to do right by my child, and that doesn't necessarily equate to taking him to see a different doctor every day of the week in order to get all the answers we need, and it doesn't necessarily equate to my sublimating my gut instincts or what I know experientially to be true in terms of my kid because it doesn't fit some medical school box. It means I study . . . sometimes more and harder than I did in my entire college career. It means I read . . . sometimes copious amounts of material. It means I listen to many (if not most) of you who have lots of experience and ideas to offer. It means I sometimes implement the use of supplements or therapies that no doctor has specifically prescribed but for which I have lots of information and background and good reason to think they might be helpful for my DS.

 

And honestly, yes, I've made mistakes. SamE was a mistake for him. Digestive enzymes were a mistake. B12 was a mistake. But I have to say that those mistakes pale in comparison and magnitude to the mistakes people with medical degrees have inflicted upon him over the years: ignoring PANDAS altogether, pumping him full of anti-psychotics and SSRIs, increasing dosages when they should have been decreased. And, thanks to many, many wonderful people here and throughout the PANDAS community, we've had far more success than failure and most of that has been up to us. Had we left it all up to the docs . . . even the biggest believers and treaters among them . . . I feel certain we wouldn't have arrived to this good place we're in now. It's just that none of them are as invested, as present, as experienced, as we are as 24-7 parents. So, I'll continue to seek medical consultation and continue to hope for an open mind and open ears, but I'm not going to wait on them to "get it together," or expect them to make every supplement call, along them way. I just don't feel that's very realistic.

 

Got any room for a friend under that garbage bag poncho, LLM? :P

 

LLM and MomOCD,

Soooooo well written and mirrors my sentiments exactly. I have yet to speak to ANY doctor with regards to Pandas, Lyme, co-infections, vaccinations, supplementation, viruses, etc., who have got it all figured out for each and every patient. And these are good people. The nuances and complexities of these children's journey of healing is individual, and it does take a tremendous amount of research, thesis-style, to try to spin the straw into gold. And although we are patient enough to be safe, we are fully aware of the ticking clock of childhood and of some aperture closing...so we are bold, because we feel we have no other choice.

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I hope this thread doesn't turn into a debate or make people feel like there's some sort of sides to be chosen. I was only trying to say that for those who don't have access to experts in epigenetics, this was one area that I felt comfortable treating with mostly only my own research as a guide. For my situation, it was less bumpy and more straightforward than many other issues I've had to tackle solo. If you have access to an expert, by all means, that's the way to go. I just didn't want a parent to think "OMG, my kid has this mutation and I don't have a doctor who can help, so we're screwed."

 

In my experience, this was something that was pretty easy to navigate once I studied up on Yasko and Van Konyenberg. Van Konyenberg is the first to say "hey, if you can get a doctor to help, do it." But he knows so many CFS patients are on their own. So he maps out a conservative approach that's fairly safe to try on your own and that's based on Yasko's approach. I think reading up on these two experts can help guide you if you aren't fortunate enough to have access to an experienced epigenetic doctor.

 

That said, I entirely understand and respect the viewpoint of those who disagree with me.

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I would just like those who think there are limited numbers of doctors to help to know that might not be the case. I haven't found it to be so. Here in Michigan, we have NO PANDAS docs. Thanks to another MI PANDAS mom, I was steered to a biomedical doctor who has started to treat PANDAS kids. Yet another MI PANDAS mom recommended him. He's not treating PANDAS, per se, but treating the basic dysfuncting of the child. I guess that's how I would describe it. Some people use the term integrative medicine doctor. These doctors are around. Many of them are treating kids w/ ASD. They are not limiting their practices to kids. I went to a seminar for ASD and found 5-6 doctors in my area who are treating kids for methylation, etc.... Network w/ ASD parents. Look on ASD websites. Do some calling.

 

I really just want to encourage everyone to try and find someone. Treating part of the picture isn't as effective as having a doctor run the tests and prescribe/recommend everything your child needs.

 

Just had a phone consult w/ DS's biomed doctor today. When school is out, I am to take DS off prophylactic abx for a week and see what we get. If he goes downhill, he will prescribe the prophylactic abx DS is currently on but running out of as he is at the end of the 1yr rx from Dr K. I'm starting to believe this stuff is going to work. I'm a BIG traditional medicine person. However, I'm changing my mind out of necessity for my DS.

 

 

DS got a cold about a month ago. It lasted 1.5wks. It was totally normal in length. He had a flare up that lasted 2 days!!!!!! Unheardof previously. Before we started this biomed stuff, he had a cold that started in late Nov and ended two months later, necessitating treatment dose abx and it caused a decent sized flare. This time, I did not give him treatment dose abx, held my breath and low and behold, things were pretty darn normal. Don't worry, I still have a healthy dose of scepticism and I know this PANDAS business could come right back and bite us on the butt. I'm just being cautiously optimistic. I really urge everyone to consider biomedical/integrative type medicine. I see a lot of good coming from it in my DS.

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