LNN

My DD 63lbs takes 67 MICROgrams of methylfolate 3x/wk. When we discussed the Delpin for your son, the thought was that it might be too high a dose for him. But a low dose might be very helpful, since he's MTHFR +/-. B12 is a co-factor with methylfolate, so that needs to be taken as well. You can't just add metylfolate w/o B12. Since he's also COMT+/-, you may want to try low dose methylfolate (maybe start at 67mcg using Holistic Health's liquid MethylmateB where one drop=67mcg) and hydroxyB12. Perque makes a 2000mcg hydroxyB12. Both my DH and DD prefer methylB12 even tho the experts say they should prefer the hydroxy. So you need to experiment a little. SourceNaturals makes a good 1000mcg sublingual methylB12.

At the peak of his worst Pandas days (pre-lyme dx), DS used it for about 4 months. It took the edge off the worst of the anxiety and at the time, we had very little medical support, so inositol was one of the few tools I had. It isn't one of my go-to answers anymore, but if you're in need of just a little something, it could be worth a trial. Like an SSRI, you need to tier up dosing and if/when you decide to stop, you need to taper down over several weeks. Like an SSRI, you can't stop cold turkey. It has a slightly sweet taste (like powdered sugar). So during a trial, I'd suggest using the powder, not a capsule, to help you step up doses. You can sprinkle it into food or just put it on your tongue (which is what DS found easiest). It doesn't dissolve all that well in liquids and my DS objected to having to drink the entire glass of whatever I put it in, so he found it easier to just have me put a 1/4 tsp on his tongue. Dosing was hard to figure out for a child. If you decide to try it, email me and I'll dig up the titer schedule I used. I think when DS was 50lbs, we built up to 5-6grams/day. Here are some links that might be helpful (some links may be broken - this is about 5 yrs old Inositol (Vitamin B8) as an SSRI alternative http://en.wikipedia.org/wiki/Inositol http://www.nutritionj.com/content/7/1/2 http://www.naturaladd.com/resources/articles/natural.html http://westsuffolkpsych.homestead.com/inositol_and_ocd.html

Croatian mum - the problem you could have with testing using a lab here in the US, like Igenex, is that they're going to be testing for disease strains that are dominant here in the US, not the strains that are common in Europe and Eastern Europe. (not to mention the high expense of the tests, the shipping and difficulty getting a sample drawn and sent to them). If i were in your shoes, I'd 1. ask Dr K if he has any colleagues in Croatia who can help you and 2. look for a lyme specialist in your area and 3. if these weren't possible, consider Stephen Buhner's books on treating chronic infections with herbs http://www.amazon.com/s/ref=nb_sb_ss_c_0_11?url=search-alias%3Dstripbooks&field-keywords=stephen%20buhner&sprefix=stephen+buh%2Caps%2C221 I agree with PowPow that not all Pans symptoms are lyme or caused by other tick infections. In an ideal situation, you'd explore all sorts of triggers. And some parents have pursued lyme treatments only to find something else was the issue. But in your situation, you may need to do things in a less than perfect way and you may not be able to find out the cause. You may have to just try various things (hopefully one thing at a time) to see what helps. Aside from using Buhner's books, I'd also look for someone in your country who can help with any gut issues. My son has been thru IVIG and Pex and long term antibiotics for lyme and all these things helped in their own way. He's been off antibiotics for 8 months and doing fine no symptoms - except for a tic. I think that tic comes from yeast and a leaky gut - he tics when he has high toxins in his system. So in addition to infections, gut issues can also trigger tics. So that may be something else to focus on. Things that heal the gut may also help make his body stronger to fight anything else that's there. Hang in there. Sometimes gifts come in disguise.

Not sure I understand why your pedi felt this was a high dose based on his age and weight. It's a pretty typical dose for the kids here. Augmentin never caused my son stomach upset but everyone is different. Taking it with food may help reduce upset. Here's a mainstream write up on aigmentin, doses and taking with food http://www.duanereade.com/health/DrugFactsheet/2522_1_0_2_0_0/Aclavulanate_Augmentin.aspx Some good probiotics we've used are Theralac, Kirkman's Bifido Complex and CP-1. You probably want to shoot for 30-50 Billion CFUs to start. Some here use more than that but it depends on budget. They aren't cheap.

C. Diff is short for clostridium difficile, a bacteria that can cause antibiotic-associated diarrhea and gut issues, along with malabsorbtion and serious dehydration. FYI - there's a new PANDAS overview book on sale at the Latitudes bookstore http://latitudes.org/store/ It's intended to be an intro for newbies, not for old-timers. It's an e-book, downloadable at time of purchase.

My son was on 1000mg Augmentin EX daily for many months when he was 8-9 yrs old. At other times, he was on 875mg augmentin for extended periods. But yes, probiotics are very important, preferrably taken during times when the stomach acid is low, like between meals or at bedtime, and always at least 2 hrs away from antibiotics. FWIW, some here really like Sacc Boullardi and it can be given at the same time as abx. But my son cannot tolerate Sacc Boullardi at all. Makes him very angry. We use CP-1 these days. But have used other brands over the years. Just look for ones that have good lactobacillus and bifido blends if you don't want to try the Sacc B or want another option.

My son had undiagnosed lyme when we did Pex, so its benefits did not last. If you haven't yet checked for lyme, I'd definitely do that prior to Pex.

Nancy, that is soooo awesome! My DS had that same illness last week. He was so sick, he couldn't stand up without laying back down complaining of an excruciating headache. I actually worried about meningitis (yes, my over-googled brain). But no fever, so I calmed myself down. He went thru the whole thing with no Pans symptoms (has been off abx for 10 mos). Now, he's always handles viral illness w/o issue, only bacterial infections trigger him. So I'm assuming what we had go thru the house (DD, DH also had it and I'm trying to keep it at bay as i type), was/is viral. But my DS escaped that secondary infection that got your DS. So very, very happy for you that it seems to be a thing of the past! It must feel so good to finally breathe again! What an awesome Thanksgiving memory!!!

The updated Latitudes site also has a long list of peer reviewed research studies and articles http://latitudes.org/research-pandas-pans/ You need to be logged in with your user name to access this part of the site. Lots of good articles for parents too.

You can show your pediatrician Page 3 (last full paragraph, bottom right of the page) http://www.ocfoundation.org/uploadedfiles/MainContent/About_OCD/PANDAS%20to%20PANS%20-%20Final%20form%20for%20Pediatrics%20%20Therapeutics%202012.pdf where Dr K was one of 6 physicians who provided clinical input to the NIMH and Dr Swedo as they developed the criteria and clinical descriptions of Pandas/Pans. I doubt the National Institute of Mental Health would be considered "alternative" or invite alternative doctors to participate in establishing criteria for a peridatric disease. Perhaps this wll give him some credibility in your pediatrician's eyes. If not, it may be time to travel to someone who can help. All this said, please reaize Dr K is not known for his willingness to test for or treat lyme and I know this is on your radar. The augmentin by itself will not address the lyme.

So DD is doing awesome (knock wood) with metylation supplements. DS is also doing well - all lyme/Pans symptoms resolved except for tics. Been treating for yeast - Diflucan for 2 mos and now 2 weeks on nystatin. Also did a colon cleanse. Nystatin was supposed to be kinder, gentler. But I see very little decrease in tics since switching from diflucan to nystatin. I think leaky gut is allowing toxins into the blood stream even on the gentler nystatin that's supposed to remain in the intestines. I know we should take away triggers like gluten and we tired to change diet for a week, but it was too much of a challenge. (those of you who can do it are saints!) We have reduced, but not eliminated gluten and sugars. It's the best I can do without being locked out of the house (and running to the store for my own "fix"). So my focus has shifted to trying to heal the mucus lining of the intestines. Which brought me to l-glutamine, used to heal the mucus lining. Has anyone used this or have any links? I read good things but am also looking for the cons. I believe l-glutamine can change into either glutamate or gaba, and I certainly don't want to increase glutamate. Looking for feedback. (cannot use curcumin/Enhansa - made DS very, very angry. It was horrible).

Only us really old timers realize how much of your story you've left out and just how much you've had to rebuild and overcome, how much you've given back to our little community. For you to be at a point where you can post this is so very awesome! You and DS have worked sooo hard. I'm so very happy for you :wub:

Elvis, Your best bet is to start with the directions on pg 1 of this thread. Use the heartfixer as your guide on which supplements to use or avoid. I know it feels very confusing at first, but because you know your specific issues, certain things will "speak" to you and others won't. You don't have to follow this to the letter. Let common sense and practicality and your own budget and taste buds be your guide. I for one could never follow the restrictions outlined for my own mutations. I do the best I can. As Qannie posted elsewhere today, the good news is that when you screw up, it's rarely fatal. Start low dose, increase slowly over many weeks. Let how you feel be your guide. Start with CBS first.

I don't recall a specific link about dopamine receptors but I'm guessing it had something to do with my recent comment about how VDR Taq affects your ability to make dopamine from Vitamin D and/or how COMT, MAO and VDR all play a role in how we synthesis and break down dopamine. To wade into this, you need to get into a discussion about methylation. There are two good overviews: This week there was a radio show with powerpoint slides talking about neurotransmitter balance. it touches on methylation but not in detail. it's a good intro on why the topic has such impact for our kids http://drjessarmine.com/index.php/radio-show/ click on show #3 and download the slides There's also this "Yasko for Dummies" booklet written by a Yasko student http://autismnti.com/images/Website-_Yasko_Education.pdf that tries to explain why it's important. These things look at the genetics of how our bodies are inclined to synthesize (make/degrade) dopamine (but remember having a gene mutation doesn't mean that mutation is turned on - it might get turned on later in life or never at all. It just means it has the potential to be turned on). But there are also many dopamine receptors. These are like toll booths. Receptors can be blocked by certain drugs or can be activated by certain drugs (or proteins, enzymes from foods) and thus influence how much dopamine is allowed to go thru a neuron. So in my very crude understanding, synthesis is a matter of how many cars are on the highway. Receptors are a matter of how many lanes or toll booths are open. I could be wrong - neuroscience has been forced on me, not something I have a natural affinity for. If I haven't answered your question or these links weren't what you were hoping for, let me know and I'll try again.

Which link do you mean? (I have hundreds!).

Our 504 specifies that the disease waxes and wanes and that teachers/school personnel should consult with parents whenever behaviors seem questionable to discuss whether IEP accommodations should be activated. In practical terms, I meet with the teachers at the beginning of the year and tell them to email me whenever they have questions. Some do, some don't. I also email them whenever I see things at home to give them a head's up and include one or two things I'd like them to do (e.g. please put his social behavior on your radar, seat him next to girls or in front of the class). This sometimes prompt them to reply with info I needed to have but for whatever reason, they weren't initiating the conversation. As for the lower math class, I'd see this as a good sign. I often explained to teachers that teaching him when he was in a flare was like trying to get sound waves through jello. The ripples happened, but at a much slower rate than it normally would. Having more teachers and less pressure could be helpful. Try not to mourn. In 3rd grade, my DS took a standardized test meant to assess his "learning potential". (in the midst of lyme treatment). He tested at 93 - just two points above "below average" and just barely eeked his way into "low average". I was crushed. This was a boy who at 4 asked me if the universe had an edge to it and if so, what was beyond? In 3rd grade, he was a mental mess. Two years and many, many biomedical interventions later, they took the test again in 5th grade. He tested at 110 - just two points shy of "above average" and a 17 point increase, which is a swing that's pretty unusual. And he still wasn't at what I'd have called 100% at the time. (of course, now we're transitioning to Common Core and all the kids are struggling - familiar territory for us.) I have friend who's not often on the forum anymore but her DD's IQ tested at something like 80 when sick and 120 a few years later when healthy. So focus on getting him well and know that time will heal. He may lag behind for awhile but if the learning potential was there before, you can get it back. In the meantime, he has an opportunity to learn coping skills and perseverance and character. My DD has always had an easy time academically and is now beside herself as she hits her first struggles with division. DS is so used to struggle that he's much better equipped to handle what life throws at him - and that skill will carry him way further in life than math skills.

The amazon reviews aren't encouraging but here's an ACN thread from a few years ago about it on the TS Forum http://www.latitudes.org/forums/index.php?showtopic=5106 The mom seemed pretty up on it but it seems other triggers were at play, so hard to tease out how this product contributed.

I forget - has he had his thyroid and cortisol levels checked? DD has some adrenal fatigue going on and we were using ashwaganda with limited improvement. Then a few weeks ago, she started complaining about getting dizzy if she stood up too fast, dizzy after recess and her hands developed tremors. Consulted with the LLMD, who we had an appt w/that week. I pointed out her lips were exceptionally chapped even in the summer. We agreed to really push fluids (some of her symptoms resembled POTS and the treatment for that is tons of hydration). Within a week, her lips started to heal, the tremors and dizziness went away and....(drum roll) she started falling asleep within 20 min instead of 90 min. Sometimes, it's the simple stuff that's so easy to miss.

When I was looking for info on kavinase, I could only find good reviews (which all sounded like infomercials). I wanted the good and the bad. Kavinase has two ingredients as far as I can tell - Taurine and phenibut. So I looked up phenibut, dosing, side effects - and that's when I found forums of people using it for sleep problems and many seemed to have issues with it losing its effectiveness, so they'd increase dose and then realize they had horrible withdrawal when they tried to taper down. Now, they were using doses in the 4mg range and kavinase is only 1mg per capsule of some "proprietary" blend of taurine+phenibut, and you're only supposed to take 1-2 capsules. But....I also assume 2mg for a child might be just as potent as 4mg for an adult. Some forum users compared it to benzos and other addictive drugs. It just set off warning lights for me - not something I wanted to pursue.

This presentation talks about melatonin in his presentation - I know it's hard to carve out 45min but I think it could answer your question and make the wheels turn on what the melatonin clue is telling you about your DS http://www.blogtalkradio.com/drjessarmine/2013/11/19/mood-disorders-neurotransmitters-inflammation-methylation?utm_source=Reminder%2BAlert&utm_medium=email&utm_campaign=REMINDER_EMAIL_

This was a great show! You can listen to it now - it's archived. Just click on the link above. It totally summarizes the ways my thinking has evolved on health and neurological symptoms. As a real kicker, slide 9 of his presentation is the graphic I made from my MTHFR blog - cool surprise. And one of our ACN members calls in with a question about Pandas @45min mark and he has some good advice on lyme and why it's so prone to causing neuropsych issues. I don't know much about this doctor - he's a chiropractor and an RN, not an MD or DO. Not that this lessens his knowledge. Just know who the messenger is. I don't know anyone who's become his patient and can't offer any opinions. But carving out 45min to listen to his presentation is a great way to pull the pieces together in a simplified manner. He does it in a way anyone can understand, not in a Yasko way that leaves you feeling clueless. Going to make a point of listening to his episode from last week on leaky gut too. Definitely a good investment of time. **edit - at one point in this presentation, Armine talks about Kavinace as a gaba product that crosses the BBB. It peaked my interest so I went off and googled it. Saw lots of product advertising, some stuff that talked about the benefits. But then googled the ingredients of Kavinace - one of which is phenibut. Came across a forum discussion and found lots of negatives about it being addictive and having properties that made me seriously reconsider. Not something that should be used without lots of prior research. So...if you're like me and here this part of the presentation and think "oh cool" - do more research first. It's not the great discovery I first thought it might be.

Niacinamide helped my DS when he was in a rage - DS tends to be an overmethylator and niacin sucks up methyl groups like a sponge. It has the opposite effect on DD, who tends to be an undermethylator and the last thing she needs is something that makes her shortage of methyl groups worse. So in my experience, it depends on genetics and methylation. If you try it, start low dose - like 50 mg - not the 500mg you typically find on amazon. Break the capsule open if you need to. This article might help http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/ Niacin does help break down glutamate but the dose you'll do best on depends on your genes. Good luck!

I was actually thinking switch to the stronger one first and then finish up the amox. No sense letting the buggers survive while you finish the amox. JMO

My son has never had an issue with the strep thermopolis. It's not that I take any pains to avoid it per se, it's just that it's usually found in high sugar yogurts - and its the sugar that's a bigger problem IMO, with yeast always looking to have a house party, drunk on sugar. The best categories of probiotics are lactobacillus and bifido strains. I've had the most success with brands that use these two families. Currently trying CP-1 and have used Kirkman's Bifido and Theralac in the past.

Searching - you might be interested in this book on eating disorders - http://jamesgreenblattmd.com/ Greenblatt is a professor at Tufts and supports biomed/nutrient support for eating disorders. His Answers to Anorexia tells you how to do a zinc test to see if you're deficient in zinc. Adding zinc made an enormous difference for my son, cognition-wise and health-wise.