LNN

Hope - I think the supplement you might be thinking of is glucosamine. It's commonly used for joint pain in arthritis, easily found in any local CVS/Walgreens/Walmart in the aisle of arthritis remedies. We used to use it pretty frequently a few years back when DS had muscle and joint pain and the things we were doing for Pandas didn't help. Motrin helped for other symptoms but not for the pain. I eventually stopped using it because the relief wasn't long lasting for him. Surfmom, like HopeNY, we eventually found that my son had/has Lyme. His pain has largely gone away with treatment, tho it does return whenever we change abx or get aggressive and provoke a herxheimer response (a worse before you get better thing caused by the toxins of dying bacteria). At the very least, you should have your child tested for Lyme using a standard Western Blot test from your local lab. However, be aware that this test is notoriously inaccurate and if she has additional pediatric Lyme symptoms http://naturalnutmeg.com/?p=1677, you may want to do some additional research (start by reading the helpful threads at the top of the lyme forum). My son, like many, tested negative on the standard western blot but showed 5 bands on a similar test from a lab called Igenex, which looks at certain antibodies that the standard test does not look for. So it's something you may need to hunt down rather than relying on first results. But still, the standard WB is inexpensive, widely available, and if you get any positive bands from that, you may not need to move on to the more expensive tests. The weak grip may be a neurological symptom. Our neurologist tested DS by having him do a "milk maid's grip" where he had to squeeze her two fingers as tight as he could. But the cause of the weakness isn't clear. Pandas, Lyme and several other illnesses can all cause a weakness.

At various times, we have used Gaba and Tryptophan for anxiety. Others also find 5-HTP helpful. (Not to mention motrin). I'm also a big fan of CBT (cognitive behavior therapy) for anxiety. Highly recommend What to Do When You Worry Too Much by Dawn Heubner and Freeing Your Child from Anxiety by Aureen Wagner. Also search the forum for old threads on CBT, particularly those written a few years ago by MomwithOCDSon, SmartyJones, Meg's Mom and me. It's not discussed as much as it once was but it used to be discussed on this forum quite a bit and can be very, very helpful. Breathing techniques can also help calm the physical response to anxiety and so can "color therapy" where you have your child imagine a "happy" color. Then have them imagine dipping their toes into a puddle of that color and sucking in, like they're a straw. They suck the color in up to their knees and hod their breath for the count of 10, letting the color soak in. Then they blow the black, anxious color out. Then they suck the happy color in again, up to their belly. Hold for 10, blow out the black. Suck again, drawing the happy color up to their armpits....blow bad stuff out. Keep going until they've flooded their bodies with happy color. The deep breathing and visualization helps calm them and gives them an element of self-control over the overwhelming feeling of anxiety. I also tell my kids to stay away from people and situations that make them feel black and chose things that make them feel happy colors. This is what CBT is all about - shifting your thoughts so that you feel kike you have more control and in the process, calming the physical response to fear.

I tried NAC with my daughter earlier this year and had a negative reaction - she got emotional and a little bi-polar. So we stopped. BUT...this was before we learned about and treated an MTHFR mutation. A few weeks ago, I had a cold that led to this perpetual dry, asthmatic cough. The inhaler, meds - nothing helped. So I started taking NAC and my cough started getting more productive. Among it's many benefits, NAC thins mucus. (take note - because of this, it can act as a biofilm buster and with lyme in your picture, you may provoke a herx as the film gets weaker and the immune system and abx can get to more of the germs hiding in the film). I feel no ill-effects from the NAC. I may try NAC for my DD again because she has the same dry, unrelenting cough I did. But NAC also effects glutamate, so I may chicken out and try Mucinex with her first. Like Nancy, we use a much cheaper supplement - NAC from NOW Foods, 600mg/pill @ $20/250 capsules from Amazon ($0.08/pill). Good luck - hope it helps!

Ditto to Nancy - my kids have been on zith for years. We check liver function every 3-4 months and we all take milk thistle 300mg once a day. I can tell when I've stopped taking it for a week or so that I really start to feel dragged down. If you can't take milk thistle (an allergy is possible since milk thistle is a weed in the ragweed family), you can look into lecithin, resveratrol, alpha lipoic acid and other things. Google "liver detox" for additional ideas.

Some have found mold to be an underlying factor. It can raise your levels of inflammation and then a second infection can trigger a cycle of inflammation that doesn't resolve even after the infection is gone, because a source of inflammation (your body's response to mold) is still stirring the pot. This is a very helpful explanation http://www.survivingmold.com/diagnosis/the-biotoxin-pathway Not suggesting you run every test, but here's what Shoemaker, the mold guru, looks at http://www.survivingmold.com/diagnosis/lab-tests I've found mold on the drum of my washing machine (the plastic drum that encases the metal drum you can see - need to take your washing machine apart to clean it) and also in our A/C units. So it's not only a matter of saying my basement isn't damp, we have no water leaks... any place your home has water or condensation, there can be mold. Even in the cleanest, newest house. You might also consider trying a combo of abx instead of just monotherapy. Sometimes, for a stubborn infection of an "intelligent" bacteria like Lyme, that can change it's cellular shape when under threat, it helps to use both an extracellular abx (e.g. augmentin, keflex, a cephalosporin, doxycyline if your child has all his adult teeth..) plus an intracellular abx like zith - at the same time. One final thought is to consider the role of biofilms. The plaque on your teeth is a biofilm - a film that lets colonies of bacteria and viruses thirve under the cloak of a film where abx and the immune system can't penetrate. N-Acetylcysteine is a good film buster as is nattokinase. Even Mucinex can help in a pinch.

I don't know if grapefruit seed exract (GSE) - an effective antibacterial, would cause a similar reaction, but I pass this along as something to look into for anyone taking any meds - prescription, OTC or natural supplements. Check for interactions! Grapefruit Is a Culprit in More Drug Reactions By RONI CARYN RABIN Photo illustration by The New York Times The patient didn’t overdose on medication. She overdosed on grapefruit juice. The 42-year-old was barely responding when her husband brought her to the emergency room. Her heart rate was slowing, and her blood pressure was falling. Doctors had to insert a breathing tube, and then a pacemaker, to revive her. They were mystified: The patient’s husband said she suffered from migraines and was taking a blood pressure drug called verapamil to help prevent the headaches. But blood tests showed she had an alarming amount of the drug in her system, five times the safe level. Did she overdose? Was she trying to commit suicide? It was only after she recovered that doctors were able to piece the story together. “The culprit was grapefruit juice,” said Dr. Unni Pillai, a nephrologist in St. Louis, Mo., who treated the woman several years ago and later published a case report. “She loved grapefruit juice, and she had such a bad migraine, with nausea and vomiting, that she could not tolerate anything else.” The previous week, she had been subsisting mainly on grapefruit juice. Then she took verapamil, one of dozens of drugs whose potency is dramatically increased if taken with grapefruit. In her case, the interaction was life-threatening. Last month, Dr. David Bailey, a Canadian researcher who first described this interaction more than two decades ago, released an updated list of medications affected by grapefruit. There are now 85 such drugs on the market, he noted, including common cholesterol-lowering drugs, new anticancer agents, and some synthetic opiates and psychiatric drugs, as well as certain immunosuppressant medications taken by organ transplant patients, some AIDS medications, and some birth control pills and estrogen treatments. (The full list is online.) “What drove us to write this paper was the number of new drugs that have come out in the last four years,” said Dr. Bailey, a clinical pharmacologist at the Lawson Health Research Institute, who first discovered the interaction by accident in the 1990s. How often such reactions occur, however, and how often they are triggered in people consuming regular amounts of juice is debated by scientists. Dr. Bailey believes many cases are missed because doctors don’t think to ask if patients are consuming grapefruit or grapefruit juice. Even if such incidents are rare, Dr. Bailey argued, they are predictable and entirely avoidable. Many hospitals no longer serve juice, and some prescriptions carry stickers warning patients to avoid grapefruit. “The bottom line is that even if the frequency is low, the consequences can be dire,” he said. “Why do we have to have a body count before we make changes?” For 43 of the 85 drugs now on the list, consumption with grapefruit can be life-threatening, Dr. Bailey said. Many are linked to an increase in heart rhythm, known as torsade de pointes, that can lead to death. It can occur even without underlying heart disease and has been seen in patients taking certain anticancer agents, erythromycin and other anti-infective drugs, some cardiovascular drugs like quinidine, the antipsychotics lurasidone and ziprasidone, gastrointestinal agents cisapride and domperidone, and solifenacin, used to treat overactive bladders. Taken with grapefruit, other drugs like fentanyl, oxycodone and methadone can cause fatal respiratory depression. The interaction also can be caused by other citrus fruits, including Seville oranges, limes and pomelos; one published case report has suggested that pomegranate may increase the potency of certain drugs. Older people may be more vulnerable, because they are more likely to be both taking medications and drinking more grapefruit juice. The body’s ability to cope with drugs also weakens with age, experts say. Under normal circumstances, the drugs are metabolized in the gastrointestinal tract, and relatively little is absorbed, because an enzyme in the gut called CYP3A4 deactivates them. But grapefruit contains natural chemicals called furanocoumarins, that inhibit the enzyme, and without it the gut absorbs much more of a drug and blood levels rise dramatically. For example, someone taking simvastatin (brand name Zocor) who also drinks a small 200-milliliter, or 6.7 ounces, glass of grapefruit juice once a day for three days could see blood levels of the drug triple, increasing the risk for rhabdomyolysis, a breakdown of muscle that can cause kidney damage. Estradiol and ethinyl estradiol, forms of estrogen used in oral contraceptives and hormone replacement, also interact with grapefruit juice. In one case in the journal Lancet, a 42-year-old woman taking the birth control pill Yaz developed a very serious clot that threatened her leg several days after she started eating just one grapefruit a day, said Dr. Lucinda Grande, a physician in Lacey, Wash., and an author of the case report. But Dr. Grande also noted that the patient had other risk factors and the circumstances were unusual. “The reason we published it as a case report was because it was so uncommon,” she said. “We need to be careful not to exaggerate this.” Some drugs that have a narrow “therapeutic range” — where having a bit too much or too little can have serious consequences — require vigilance with regard to grapefruit, said Patrick McDonnell, clinical professor of pharmacy practice at Temple University. These include immunosuppressant agents like cyclosporine that are taken by transplant patients to prevent rejection of a donor organ, he said. Still, Dr. McDonnell added, most patients suffering adverse reactions are consuming large amounts of grapefruit. “There’s a difference between an occasional section of grapefruit and someone drinking 16 ounces of grapefruit juice a day,” he said. And, he cautioned, “Not all drugs in the same class respond the same way.” While some statins are affected by grapefruit, for instance, others are not. Here is some advice from experts for grapefruit lovers: ¶ If you take oral medication of any kind, check the list to see if it interacts with grapefruit. Make sure you understand the potential side effects of an interaction; if they are life-threatening or could cause permanent injury, avoid grapefruit altogether. Some drugs, such as clopidogrel, may be less effective when taken with grapefruit. ¶ If you take one of the listed drugs a regular basis, keep in mind that you may want to avoid grapefruit, as well as pomelo, lime and marmalade. Be on the lookout for symptoms that could be side effects of the drug. If you are on statins, this could be unusual muscle soreness. ¶It is not enough to avoid taking your medicine at the same time as grapefruit. You must avoid consuming grapefruit the whole period that you are on the medication. ¶In general, it is a good idea to avoid sudden dramatic changes in diet and extreme diets that rely on a narrow group of foods. If you can’t live without grapefruit, ask your doctor if there’s an alternative drug for you. http://well.blogs.nytimes.com/2012/12/17/grapefruit-is-a-culprit-in-more-drug-reactions/?src=me&ref=general

I understand how everyone feels. But maybe this will help... I've been at this for 4 yrs now. My son has lyme and Pandas and pyroluria. We have done steroids, Pex, IVIG and now, 2 yrs of lyme treatment and counting. It does get extremely exhausting. But each time a "cure" failed, we uncovered another problem. When we eliminated that problem, the burden got lighter. The next flare was milder. It has been horrendously expensive. Horrendously frustrating. Taken its toll on marriage and childhoods. But we have come so, so far. Is he cured? No. Is he better? Much. Very much. I'm not on the forum much these days. Because things are better. And I had this life that I put on hold and now things are stable enough that I need to spend more time nurturing that 80% of life I've ignored. I too once worried about what the future held. But he's gotten better. I don't worry anymore, even though there's more to do. I know now we will get there. (now I worry about his teen years and drugs and drunk driving and peer pressure and the perils of the internet - so the worry doesn't stop - the topic just changes). On Saturday, I spoke to a BFF - a mom I met first on another forum and then here. She called to see how the kids had handled the news. We talked about a dozen things - and not one of them was about Pandas. She hasn't been on the forum in over a year, because her daughter is rock solid - no Pandas issues. We don't call her cured - things could change in an instant. But life is good again. The mom continues to advocate - in a big way. But she too had to nurture - and rebuild - a life beyond Pandas. Unfortunately, what happens when old timers leave is that the forum stays in a perspective that no one gets well. The only stories you hear are of struggles. So it starts to feel like there's no hope. But there is. Kids do get better. it's just that some have to dig deeper, some have more than one issue that led to the crisis and therefore need more time to get well. But it will come. And then you too will find yourselves here less often - and that's what we all need to keep shooting for.

Here are two really powerful parent essays making their way around the web this weekend: On Facebook, Donald Craig Peterson shares: As a result of the Connecticut shootings, many of you have read this compelling piece "I am Adam Lanza's Mother" that has been shared and re-shared. Well, I am Ashley, Alex, Travis, Andrew, Michael and Brandon's father and want to dig a li ttle deeper into our collective consciousness. Yes, we need accessible mental health services for children, teens, and adults with serious mental illness, but we ALSO need much more compassion and less judgment. Some schools do a wonderful job creating a safe place for these kids...others do not. Imagine going through years of education and having no one understand how you truly feel. Imagine being backed into a corner everyday. Imagine feeling all alone. Imagine being bullied. Imagine being told repeatedly to "act" like other kids. No wonder drugs or hours of therapy are ever going to remove the layers of pain inside the individual. To this day after 15 years of parenting six children with mental health challenges ranging from mild to severe, I have walked beside them, but I have never truly walked in their shoes....because that is not possible. Oftentimes, simple verbal or non-verbal language creates perceptions that defy logic. The signals in their brains simply do NOT connect properly. What I would like most from people in my community is a willingness to listen, learn and empathize. Thousands of caregivers every day deal successfully with difficult children who have the potential to create great harm (and even killing given the right circumstances), but they endure....many nights tired and exhausted from battling systems that like to blame the parent rather than examining the child. So, if you know of families that struggle with an atypical child, PLEASE do not shun them. PLEASE do not fear them. Offer supportive words. Recognize their children's strengths. Speak to all involved like they are human...because they are. I am grateful for the teachers, therapists, law enforcement officials, extended family members who have taken a risk on my children and looked for the good in them. Well-chosen, positive words ARE incredibly powerful! At the same time, I hope that those who refused to see the whole child will continue to educate themselves or find another profession where their constant belittling does not add to a problem that is already immense in size. Sadly, church became one of the most judgmental places of all...we had to quit going because of the way some people made my children feel about themselves. They hated the place. Almost none of the strategies that worked for my parents in raising their six children work with mine....sometimes a different and non-traditional approach is ALL that is needed....before the damage cannot be undone....before a crime is committed...before a heinous act leaves someone injured or worse.....dead. Today, this week, this month, this year, and always.....who around you needs a caring voice. Don't be afraid to reach out to someone unlike yourself. And this one, written by a mom who fears her child could be another Adam Lanza.. http://www.blogger.com/profile/18104642282433680432 I agree with you, Jill. Labels are too easily handed out, not just for ASD but for childhood bipolar and other labels. I have no objection to a child getting services that can help and in that sense, early ASD diagnosis is a good thing. Wider acceptance of an ASD label is in some ways a positive. But as I start working next month with parents who's preschoolers have ASD diagnoses, I'm amazed at how few have ever been told about the biomedical options for treatment (in addition to, not instead of, therapies). I feel like a nut whenever I even bring the subject up. And yet, a few get wide-eyed and really want to know more. It angers me that in the wake of this horrific tragedy, the two conversations that will get air time will be a renewed and angry debate over guns and a less-covered conversation about mental health - but even that will focus on psychotropic meds and making sure people take them. No one will talk about infection or diet or methylation or helping people overcome biological problems that literally drive them crazy. It's just too "out there", too complicated for most people to embrace. And yet, it's such a big part of a potential solution. I can only hope that by building strong relationships with those who work with my kids, with those I will start working with at an ASD social therapies center next month, by sharing thoughts in a blog, it creates a small ripple effect and a few lives are made a little better because there's a little less stigma. That my kids will be less stigmatized for their issues because I was able to open up the conversation and make people understand a little bit more. Make them less afraid that being sick makes you a sociopath. One more blog as food for thought...http://www.easytolovebut.com/?p=1983 I think we all need to speak up more, to make something good come from this horror.

Yikes here too! DD takes 67 MICROgrams. I've heard of people on 10mg of Deplin and that's about the highest I've come across. Yasko, Van Konynenburg and Lynch all suggest 400-800micrograms as a starting point. So talking about taking grams of the stuff is a new one on me. Michael - are you actually taking grams? FWIW - I've read that there's an upper limit of absorption on methylB12 per wikipedia (midway thru the article under the heading Absoprtion and Distribution: It's important to note that investigations into the intestinal absorption of B12 point out that the upper limit per single dose, under normal conditions, is about 1.5 µg: "Studies in normal persons indicated that about 1.5 µg is assimilated when a single dose varying from 5 to 50 µg is administered by mouth. In a similar study Swendseid et al. stated that the average maximum absorption was 1.6 µg [...]" [65] So if you're taking more than that, you may want to space out your doses and break it into smaller amounts, as it seems more than 1.5mg at a time is wasted. It also discusses how the body will only store about 2-5 mg, most of that being stored in the liver.

I don't have any experience with A1298C and can only tell you Yasko suggests using DMG/TMG. But I came across this site today - they have a forum as part of the site and maybe someone can give you some good info http://www.holisticheal.com/methylmate-b-nutritional-supplement.html There's also a Facebook page with the same name with the same people. It's an open page, so you can see all posts and comment if you choose without needing to join a group (but likewise, everything you posted would be public).

My son developed symptoms that looked like tardive dyskenesia after just one dose of tamiflu. He felt so weird and his legs were jerking so badly, I never gave a second dose. His symptoms resolved after about 48 hrs. So it's possible Tamiflu was the trigger. But you're a month out now, so I have to wonder what's causing the pot to still be stirred...have you checked him for mycoplasma? Some say zith isn't always effective. My son was a big ticcer when Pandas first hit. But tics went by the wayside post-pex in '09. We have seen two short periods of tics since then. Both were caused by severe herxes when treating lyme. My son can't handle the overload of toxins from the dying bacteria and it shows up in both behaviors as well as tics. So we get super crazy with supplements that help detox and inflammation. We also back down on abx, to stop killing quite so many buggers that are exploding toxic bombs all over the place as they die. For inflammation we use motrin 2-3/day. For detox, we use alpha lipoic acid, B6, Vitamin C, resveratrol, milk thistle, lecithin, activated charcoal and/or bentonite clay. ALA, B6 and milk thistle are my top 3 followed closely by a good brand of resveratrol. There's no single bullet here. It's a combo of backing off the abx (not stopping - just lowering the dose - or if mycom maybe switching), tamping down inflammation and helping the body clear out the toxins. Also check for mold issues, which can keep you flaring despite clearing infections, yeast etc. If you're concerned about a lingering infection, GSE and l-lysine are good as is zicam, which also provides zinc to help the immune system. Wish I could give more concrete advice. The only thing I've learned in 4 yrs is that every flare presents clues and each time, we've found one more layer of the problem. Something is still in your way. As much as it sucks, you can at least look at this as a chance to root out one more culprit. Hang in there - you know you'll get on top of it.

My son (85 lbs) takes 40 mg elemental zinc - but he has pyroluria - a condition that causes him to pee away a lot of zinc before his body has a chance to use it. So we over-supplement to compensate. Not sure how 40mg elemental zinc compare to "regular" zinc? Not exactly sure how "elemental" changes things. Trg girl - if it's a success, I'm sure I'll be posting about it!

I have not used BH4 - I'm not even sure you can get it in the US. DD only has C677T issues, so I haven't had to wade into the unknowns of A1298C. Because she used to have GERD and GI issues, I did consider trying DMG/TMG but accidentally bought TMG Betaine, which I then read wasn't the same thing. I did a short trial but didn't see anything. Her gut issues resolved once we started giving (the right dose of) methylfolate to treat her C677T. Sorry - I get so lost on nitrites vs nitrates and sulfates vs sulfites. I defer to Yasko, who definitely spends time on it but it wasn't the part of the video I made myself truly understand. I needed to save my brain power for the sections that dealt with my own house. It's a lot to try to comprehend.

The neuroprotek was for my daughter - who doesn't have attention/processing issues. I got the neuroprotek for her b/c I had freaked myself out over a genetic mutation Greeks can have (DD is 50% Greek from DH side) that causes anemia if you consume fava beans (which is what most Quercetin is made from). DD was taking quercetin daily. Turns out this wasn't her issue. Fatigue continued with or w/o quercetin or the neuroprotek. It may be related to B-12 but still experimenting. My son is the one with the attention/processing problems. I considered Lutimax but never pulled the trigger. I just ordered PS-100 yesterday after months of hemming and hawing. Will let you know if I see any improvement worth opening your wallet for.

I hope this doesn't make you drink heavily, but the longest flare we had to endure was 10 weeks (a herx triggered by IVIG). There are many things we've ended up adding to our pill regimen because of that lost summer. The supplements fall into three categories: controlling inflammation (motrin or tumeric/curcumin) controlling yeast (probiotics, garlic or grapfefruit seed extract) supporting detox (alpha lipoic acid, resveratrol, vitamin C, activated charcoal, bentonite clay, milk thistle (love this one), P-5-P form of B6) And then there's therapy - ERP and CBT. This forum has moved away from talking about therapy as much as it used to. But I can't emphasize it enough. No matter how many pills I throw at my kids, there's still something to be said for them taking charge of their own thoughts and managing their own responses. The skills they learn from CBT and ERP will help them for years to come. I would also consider testing her MTHFR status and perhaps doing a few of Shoemaker's inflammation tests (http://www.survivingmold.com/diagnosis/lab-tests[/url and [url=http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html]http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html] For some, this has been an overlooked piece that played a role when abx alone didn't seem to be getting the job done. I know this totally sucks. Hang in there.

For A1298C, your best bet is to wade thru a Yasko video (either the autism One video http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1- or something similar from YouTube). Some docs assume that A1298C isn't so bad and doesn't need treatment. Yasko disagrees and supplements with BH4 - but I'm not sure where she gets it. It's very hard to obtain (prescription). I think she also recommends TMG - but make sure if you use this you don't buy TMG Betaine - apparently that's something different. Even Yasko is vague on how to treat this mutation. And finding articles is nearly impossible. You could consider a consult with Ben Lynch (www.mthfr.net) but I have no direct experience with him. I think the supplements your LLMD is using are really helpful for detox. But I'd wonder about the need for l-methylfolate if you don't have a C677T mutation. That may be an unnecessary expense. I wish I had better info for you. This is the "orphan" mutation but it seems like it may be a big deal for serotonin and dopamine utilization and I can't understand why it isn't better researched. I think your best bet is to wade thru the Yasko video. Sorry i can't be more help.

Persistent? Me????!!! Surely you mean someone else What a nice early Christmas present to all of us here - to hear DD is so happy and both kids are getting their lives back! Not to mention the joy and relief you and DH finally get to enjoy. You've certainly paid it forward a 100 times over and I'm sure you've rescued many kids who would've been misdiagnosed. As much as the moderator bristled when the rest of us posted on that "other" forum, you stuck with it, with your true diplomatic skills, and kept that foot in the door so others could learn about Pandas (and lyme). And of course, let's not forget how you changed my life too! (on the reading, check into convergence insufficiency. My DD has been doing vision therapy for 4 weeks (plus new glasses that correct for CI). When we started, she did an exercise where you have to throw a tennis ball at a coin on the floor. She used to see 2 coins, not one. Last week, she finally saw just one. Her reading has improved noticeably.) So, so happy for your family! Thanks for the good cheer!

With PEX, your own blood is filtered and returned your body. So type isn't an issue.

I second Smarty's experience. My son has pyroluria (aka KPU). Once we started treating this with a supplement called CORE, that has a high amount of B6 (the P-5-P form of B6) and zinc, it was like someone turned on the light switch. He still struggles with brain fog during flares, but the a much lesser degree. I also just ordered PS-100 (100mg of phosphitidyl serine) that is reported to help with attention and memory.

I just learned about Vayain - a prescription blend of phosphatidyl serine and Omega 3s http://vayapharma.com/Article.aspx?Item=892& This is the sort of thing I think we're going to see more of - biomedical supplements parents in the ASD (or ADHD or ...) worlds have known about for quite some time. But now that a pharmaceutical co. has created their patented blend, one of my online groups has been abuzz with how awesome it is for ADHD. Like I said, I'm happy if it means more kids get help using more natural means. It just irks me that it takes a pharma co. to promote it (and make $$$ from it) before the general population believes in it.

This may spare you some unnecessary angst and anger at the administration...When I first asked for a 504, I was offered a behavior plan instead, which I felt was insufficient. We went around and around and I felt like I was hitting my head against a wall of bureaucracy. The only way I got one was afer I found a Pandas doctor and submitted a letter from the doctor, giving my son the offical diagnosis of Pandas, a list of associated behaviors and learning issues, examples of appropriate accommodations and the explicit sentence that my son's condition qualified him for a 504 Plan under the Individuals with Disabilities Act (IDEA). Once I presented that letter, it was like Moses parting the seas. Whether they wanted to help me or not, they now had a legal obligation to do so and could not go against what a doctor said was a medical need. Without that letter, they can make you feel like a dog chasing its tail and really don't have to do very much. Several of us have sample letters we can send you or you can search the forum for 504 letter and see a few things posted in the past. Some of the pandas websites also have sample letters. When I needed a 504 for my daughter when she was missing school for an epstein barr virus, I wrote the letter and the doctor's assistant retyped it onto their letterhead, changing a few words as she felt appropriate. The doctor then signed it. It helps a busy doctor to have a draft to start from and it's more likely to get done quickly. With that letter in hand, I got absolutely no argument.

My DD has always been a picky/limited eater. She will judge foods based on how they look and decide right them whether she'll eat it. It isn't OCD. For years, we searched high and low for the source of her problems. She had GERD and dyspepsia but Upper GI endoscope found only the slightest irritation. Negative cultures, negative stool tests. It got worse while she battled EBV. Then this past spring, we started treating her MTHFR mutation and her eating is "normal" and she's put on weight. No more GERD, normal appetite. While researching the whole MTFHR thing, I came across the role of serotonin in the gut. It apparently "calms" the cilia. I didn't pay tons of attention at the time because it was related more to those who have an A1298C mutation, which my DD doesn't have (hers is C677T). But perhaps some of the supplements used for A1298C might help your son - TMG/DMG, tryptophan or 5HTP... along with treating the EBV with l-lysine. Have you done the MTHFR test? I realize just because this worked for my kid doesn't mean it will work for yours. But I toss it out there as something to look into. I agree that if you make too big a deal over the food, it can backfire. I personally wouldn't weigh him every day. Everyone's weight changes day to day. Maybe twice a week? I also get that this is becoming a critical issue. So it's a hard balance. What is his opinion on all this? He's certainly at an age where you need his cooperation to make this work. Does he realize that he's on the cusp of needing forced feeding?

If this is so obvious in certain realms of research, why is it so hard for mainstream docs to believe that a bacteria (strep/lyme) can alter our minds? http://www.nytimes.com/2012/12/11/science/parasites-use-sophisticated-biochemistry-to-take-over-their-hosts.html?pagewanted=1&_r=0

This article came out today http://healthland.time.com/2012/12/06/a-blood-test-for-autism/?xid=rss-topstories&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+time%2Ftopstories+%28TIME%3A+Top+Stories%29&utm_content=My+Yahoo It talks about how researchers have zeroed in on about 55 genes that may play a role in autism. Anyone want to bet that at least some of them are the ones that Yasko tests for and are involved in methylation and immunity? Mark my words - in 10 yrs, Big Pharma will have made a synthetic multivitamin that contains things like methylfolate and P-5-P (B5), charge lots of money and claim full credit for this ground breaking ASD treatment. Not that I won't be thrilled for the thousands of kids who get helped. But if you read between the lines, they may finally be on the trail we already talk about. Let's hope...

There are two tests I'd consider - one is his HLA-DR gene (this site explains why http://www.survivingmold.com/diagnosis/lab-tests) You might also like these links on the biotoxin pathway (same info in both but I find the second one more helpful) http://www.survivingmold.com/diagnosis/the-biotoxin-pathway and http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html The second test is his MTHFR gene, which can indicate a problem with methylation, a type of metabolism in your body that directly effects how well your body can create certain neurotransmitters (like dopamine - a big player in tics) and whether any logjams might be interfering with the detox system. It can be tested at any commercial lab but here's one lab's info on the test http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=36165&labCode=NEL (test number may vary depending on your location, NY has a specic test # for this test. So this is posted only as an example). I'm in the process of editing an article on MTHFR and why it can be important. I'll post the link when it's available, probably early next week.