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Yea Alex!! :) So happy to hear that your son has come so far! You are proof that we all take different paths up, over, through, under or around the mountain, but with perseverance, we all get there. Wishing you a very joy-filled and healthy new year!

You too Dut!!

I'd really consider stopping the Sacc Boulardis as a first step. My DS has horrible experiences with this one. It gives him OCD, tics, rages and hyperactivity. I know it's a "good" yeast, but I've tried it several times and get the same result each time. Try eliminating that and using a different, non-yeast probiotics for a week or so first. Then try the P-5-P while you wait for the 23andMe results. I know you're dying right now, but trust me, you'll be glad if you can wait on the results before introducing the methylfolate and methylB12. Stopping the Sacc B and introducing a new probiotic and P5P will use up a few of those weeks. You don't want to introduce the methyl forms of B9 and B12 without knowing for certain his MTHFR status. If you give these to him and he doesn't need them, it could introduce mood issues of its own. Also, when you start, consider using a 1/2 tablet of the metafolin. My DD9 takes only 67mcg every other day. She gets very angry and bipolar on a higher dose. Your DS may indeed need 400mcg or even more, but you do need to start low or you can just make things worse. Have some niacin on hand as well while you're in experimenting mode. If you overdose him with methyl groups and get a sudden metldown, 50mg of niacin can be a re-set switch within hours. My opinion, FWIW - stop the Sacc B now, introduce a new probiotic in 5-7 days, start the P5P in about 2 weeks. Give that 1-2 weeks and then when you get the 23andMe results, if he has MTHFR issues, introduce 200mcg metafolin + 1000mcg sublingual B12 every other day for 2 weeks and observe while you pour over other methylation results. Then go from there. Just my two cents and lord knows I've made my own mistakes, so I'm no final authority. But from my own mistakes, I can tell you that starting several things at once rarely works as hoped. It's cost me more time and I just end up having to start over, one thing at a time.

I use 10 ml - which I think is 2 tsp. Based on how he described the taste, if you decide to supplement, I probably wouldn't go higher than 10mg. (I take 60mg - which is on the high end but I have pyroluria). He seems "mildly deficient" based on how I've read Greenblatt describe things. As for the throwing up, it could be a with or without food thing. My DS needs copper - both because he supplements a lot of zinc for pyroluria, which can deplete copper, and based on lab work. If he takes copper with food, and without any other supplements, he's fine. If he takes it on an empty stomach, or with other supplements, he gets very nauseous and/or throws up within 15 min. So it could be that your DS would handle it better under one set of circumstances but not another (i.e. maybe he'll do ok if he takes it with a meal but not on an empty stomach).

You can PM Minimaxwell - she was involved in putting the conference together and I believe her DD is or has been a patient of Geller's.

Florastor is a yeast-based probiotic. Some love it, because it can be taken at the same time as antibiotics without being killed (other probiotics must be taken at least 2 hrs away from an antibiotic). It's supposed to crowd out "bad" yeasts like candida. But others, like my son, can't tolerate the yeast strain in Florastor (Sacc. Boullardis). For my son, this yeast actually causes symptoms very much like a Pandas flare (tics, OCD, anger, loss of impulse control). So I'd definitely do an experiment and switch probiotics to one that contains a blend of lactobaccilus and bifido strains (I like Theralac, Kirkman's High Bifido blend and CP-1). Make sure she takes it several hours before or after antibiotics. We give at bedtime, when stomach acids are going to be low for a long time. Stomach acids can kill more of the probiotics, so giving away from meals may allow more to survive and actually make it into the GI tract where they're needed. For the constipation, we use magnesium and psyllium hisk capsules. Pysillium is a fiber and helps prevent binding and hard stools. But it's like little sponges. You need to drink throughout the day so the little sponges can expand and do their stuff. Without proper hydration, fiber is of little use. Also, hydration in and of itself will help with constipation.

I'll toss out two other things to put on your list to investigate. For the past few months, DD (non-Pans, non-lyme) has been complaining of "feeling shaky" and dizzy. Her hands were trembling (as in tremors) and continued to tremble even when placed on a flat surface (so no muscle strain to keep them elevated). She drinks very little and the two symptoms (tremor, dizziness) seemed to resemble POTS a little. One treatment for POTS is hydration. So we started monitoring her fluid intake and really pushed fluids. The dizziness went away and she felt better. If she went a day or two of not drinking much, it would come back. So hydration, as simple as it sounds, is something to push in general. But even after the hydration success, there have been a few times when the tremor appeared. Weeks go by without incident, and then it shows up for a day or two. I pulled out a Genova nutrient analysis we did over the summer and I saw that she was deficient in a few things - B12, manganese...which we addressed. But she was also deficient in choline, which I'd blown past and done nothing about. Choline is involved in nerve health (as is B6 - something else to consider). Began supplementing last week, so too soon to give any success story. But something to google.

There's a blood test for antibodies against candida albicans you can request. However, there are a lot of strains beyond candida that can cause yeast hyperactivity et al. If that's negative, you can do a stool test - but results takes a few weeks. At times, I just treated based on symptoms (drunken silliness and hyperness) with 1000mg odorless garlic capsules. Many times, that did the trick and the silliness subsided over 3-7 days. You need to also restrict sugars and carbs as much as possible to not feed the yeast. L-glutamine supplements also help repair the mucus lining of the intestines and can reduce leaky gut symptoms, but it took a few weeks to see any change. The glutamine wasn't an overnight thing.

I'm not sure how much you've read on methylation, but if infection doesn't feel like the most prominent issue, and money is tight, then it may be something worth exploring. It's possible that SAMe is helping one part of the methylation cycle but maybe there are other cogs in the system that aren't moving smoothly. Dr James Greenblatt has a book about eating disorders where he focuses on mineral and vitamin deficiencies, particularly zinc. http://jamesgreenblattmd.com/ It's possible that as he goes through puberty and his body changes at different and rapid rates, any deficiencies could go from moderate to severe, since the body is needing more of this or that as it grows. Suddenly, what was workable nutrition-wise isn't enough anymore and you see things fall apart. Tryptophan and 5-HTP can be helpful, but since you're already using SAMe, I'm not sure I'd combine them. Sublingual methylB12 might help but knowing his genetics would probably be a big help if you decided to look at methyaltion supplements. Despite the bad press on 23andMe lately, you can still get the test done for $99. The FDA prevents them from giving you reports, but the value of the test - running raw data thru genetic genie or livewello - is still there. This was my Christmas present to myself last year and made a huge difference for my kids. Good luck on the break! Been there. It still makes me shudder to remember "old times".

Peglem, I'm sorry things deteriorated to this point - I can imagine it was a long, painful journey to this point. But I'm glad you've at least had validation that you've made the right decision not only for you but for Allie as well. My friend went thru a similar experience. She knew she was headed for divorce but did everything she could to try for a different outcome for the sake of her Pandas child. When it became inevitable, she bent over backwards to minimize the disruptions. Turns out the child is happier than she's been in a long time and has told her mom that it's so good to see the mom finally happy again. The pain involved in holding the marriage together was taking a toll on everyone. I'm so glad that the move has been helpful for Allie. Hopefully it will be for you too!

For us it depended on what was causing the hyperactivity. When it was from a PANS flare, motrin helped the most. Phosphatidylserine (100mg twice a day) helped a lot with focus but less so for hyper motion. When yeast was our culprit, Diflucan helped some and nystatin helped a lot.

My daughter had the rapid heart beat/headache/hand tremors/fear thing happen a few weeks ago and about 2 months ago. We increased hydration and symptoms greatly subsided except for the one episode earlier this month. (My DD is not Pandas). She tested deficient in phosphatidylcholine over the summer and I kinda ignored it, focused on other things. Her cortisol test at the same time came back slightly abnormal. My amazon order of phosphatidylcholine was due to arrive today but didn't. Hoping this helps, since not even our integrative, awesomely helpful LLMD is well versed in this area. Finding any other doctor who'd bother to dig into seems impossible. So you're not the one who feels alone on this. Can you discuss with the Dr who's prescribing the prednisolone and see if lowering the dose helps, to re-start the adrenals?

This book is a free downloadable for the next few hours from Amazon. If you don't have a kindle, you can still download it a to your PC and read it using amazon's cloud reader. The author is a guy who does some of the radio shows on MTHFR Support Have only browsed it but seems like a good overview...http://www.amazon.com/Diagnostic-Testing-And-Functional-Medicine-ebook/dp/B00HCZO6X8/ref=sr_1_1?ie=UTF8&qid=1387403073&sr=8-1&keywords=ameer+rosic

Well you have to realize that my daughter thinks many things - from white milk to carrots - taste gross. So she thought the zinc was disgusting. But from what I could gather, in that she said "bleh" rather than rushing to the bathroom sink to purge her mouth of all traces, she was mildly deficient and now takes 10mg of zinc daily. (she tested borderline for pyroluria 2 yrs ago). My son, who has tested definitely positive for pyroluria, said "what's that taste in the water?" in a mild, vague way. He had been taking 20mg of zinc and when I upped it to 30mg daily, he then said "ew, that stuff's gross!". So I know that on most days, I should give him 30mg and once or twice a week I only give 20mg. My DH and I take 50mg daily because we can only vaguely taste the stuff in the zinc challenge. But I don't want to go higher than that on a regular basis. So if you're not deficient, you'd probably think it was like putting aluminum foil or a penny in your mouth - you'd get an unpleasant metallic taste and you'd want to eat something or rinse to get rid of it. But it won't make you wretch or get violently ill. However, drama queens and kings would likely give you good show. In that sense, it's a pretty good test. It's pretty easy to tell if someone tastes something.

We saw the biggest bang for our buck - less illness, faster recoveries from colds etc - with zinc, D3 and C. My son has a zinc deficiency and takes 40mg/day. My daughter doesn't have this genetic deficiency (called pyroluria) and gets by with 10mg/day. Like MaryAw, we test D levels periodically and shoot for above 50, ideally 60-70 range. We use 500mg vitamin C daily, upping to 1000mg when sniffles come on. There's a "home zinc" test Dr James Greenblatt says you can do - drink 10ml of liquid zinc and if it has a metallic, unpleasant taste, you have sufficient zinc levels. if it has no taste, you're quite deficient. If it has a mild taste, you could stand some mild/moderate supplementation. We keep this in the cupboard and do a taste test every few months, and adjust dosing accordingly. http://www.amazon.com/Designs-Health-Zinc-Challenge-Beauty/dp/B000FGXMAY/ref=sr_1_1?s=hpc&ie=UTF8&qid=1387302748&sr=1-1&keywords=liquid+zinc My thinking follows Buhner. I think you need a strong immune system to ward off infections and clear them quickly but also need to control inflammation to limit neuropsych symptoms. Both have been important for my kids.

Here's part 2 - http://www.bostonglobe.com/metro/2013/12/16/month-medical-ordeal-conclusion-still-uncertain/Y7qvYTGsq8QklkxUZvuUgP/story.html?s_campaign=email_BG_TodaysHeadline

Here's a good recap of the BCH story on Justina http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html?s_campaign=email_BG_TodaysHeadline There's a lot to be learned here.

Here's the latest update on the BCH case http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html?s_campaign=email_BG_TodaysHeadline One thing that is very clear is that we as parents need to understand how to better play the game. The red flag throughout this BCH story is how the parents' "in your face" behaviors worked against them. I am NOT blaming the parents here. I'm saying - learn from their mistakes and take a deferential tone for political reasons. Recognize that the people now involved may have a legal obligation to report the situation regardless of whether your son remains enrolled. But the words they use if/when reporting can be influenced by your behaviors toward them. If you "suck up" and thank them for their concern, seem to welcome the "help" they want to give, their words will likely be less accusing. You have stepped on a bee's hive. Be calm and careful in your steps to de-escalate the situation. Use the words they need to hear. I agree with DCMom - get a private psychologist on board to represent your son's interests. There's one who treats lyme patients in Brewster NY http://www.lymefamilies.com/ - she may be better suited than many to understand how a medical illness can manifest as psychiatric symptoms. I would start lining up professionals to represent your perspective. The school has fired a warning shot - as much as that feels like a threat, it may be a favor. It's a warning of storm clouds and I'd proceed under the assumption CPS will become involved. Get your ducks in a row for that call or visit.

Here's my tough love answer...not that I don't sympathize with the battles you have on your hands. I do. But look at it this way: Contamination OCD has kidnapped your son and is holding him ransom. It sends you a ransom note and says "pay me with a violent video game that goes against your principals, reward me for making your son say vile things to you, and I'll let him take a pill that's a threat to me, but I'm not too worried, because I'll just send you this ransom note again in 12 hrs and if I can get your son to skip enough doses, I'll be safe and even more in control than I am now" - would you pay a ransom like that? You need to help your son see the contamination OCD for what it is - a mind-controlling kidnapper who will distort reality in order to grow stronger every single time you accommodate it. it is the OCD that's the danger to your son, not the medications that will kill the OCD. I get that the fear is strong. That the OCD is telling him the meds are evil and are contaminated and may kill him. I get that your son isn't rational about it and as a teen, his brain wiring is already not as rational as it once was. But instead of being on opposing teams, you both need to align yourself and be on the same team. Bribery doesn't put you on the same team. it makes you seem like the enemy. I think you'd get a lot out of reading John March's "Talking Back to OCD". It will help you re-frame the problem and help you understand both your role and your son's responsibilities in this battle. Stop begging and bribing him for compliance. Insist on it, not with threats of punishments that mean nothing to him but with natural consequences. "You don't want to take meds that will kill OCD? Fine. If you want to forfeit the rest of your life, if you want to live under the tyrant of OCD, if you want to give up your dreams, your friends, your happiness and you don't think you're worth fighting for, then don't take that pill. But guess what, as soon as you let OCD win, you know what it will say to you? It will tell you you can't play video games any longer. It will be so strong that it will tell you the controller is contaminated. It will tell you that the images on the screen are real and when you close your eyes at night, OCD will tell you the scenes are real. OCD will hold you prisoner. I can't force you to be well. I can't force you to fight for your freedom, for your dreams, for your life. You have to do that. But if you want to try fighting it, I will help you. I will be your coach. But I'm done fighting this alone. Get on the team or don't. Chose which life you want." The book does a much better and kinder job of framing things, but the jist is that you as a parent can't control or fight the OCD thoughts and your efforts are better spent on trying to get your son to see the problem as something he owns and something you will help him solve. I don't want to imply this is easy. It's incredibly hard. But accommodating OCD, paying ransoms, will only make it stronger and more entrenched. I would not rely on motrin to solve this for you. If you can only get one med into him, make it the augmentin. Murphy is right IMO- he needs at least a month if not longer. But I think using the ideas in the book can help you a lot.

Of the three, I only have experience with UHC, which I hate. We used to have Cigna and then that option was taken away and we've had UHC for the past 2 yrs plus one year about 5 yrs ago. I've consistently experienced more denials of coverage with UHC than with Cigna for the same services or things that should be a no brainer. We did have UHC for one year that my son was on combo abx for lyme and they covered those without issue, but then I live in CT where laws protect doctors who prescribe long term abx. They did deny the two months of diflucan for yeast despite several attempts by the doctor's office to re-code. So I had to pay $80 out of pocket each month, which was ridiculous. If I could switch back to Cigna, I would in a heartbeat. But if you know that UHC is covering things currently, you may not run into the issues I've had with them.

Just FWIW, my DS cannot handle Enhansa. He too is COMT +/- and MAO+ but his CBS is normal, so no need on our end to manage sulfurs. When he was on Enhansa, he was very, very angry and belligerent and intolerant and just impossible to be with. He couldn't even stand to be with himself. Stopped Enhansa and he was balanced and agreeable again. Dug a little and found that curcumin is an MAO Inhibitor. Since he is already MAO+, this gene is naturally down-regulated in him. So taking an MAO-I on top of that, along with his COMT making him slow to degrade dopamine, may have just left him flooded with more dopamine than he could handle. Aggression can be a trait seen in MAO mutations. So we ditched Enhansa, even tho so many rave about it. It just wasn't a good fit here. I hope you have the opposite experience! But if you don't, it could be the genetics and not a lyme herx.(DS was done with lyme when we tried Enhansa - it wasn't a herx). As for alternatives to abx, Stephen Buhner's books on natural antivirals and natural antibiotics are on my Xmas list.

In the upper right corner of your screen, you'll see your login name and the sign out button. Just below that is a search bar. See where is says "this topic"? You can click on that gray box and get a drop down menu - you can search "this forum" "blogs" and other options. You can also click on the magnifying glass and be brought to more advanced search options. Alternatively, you can go to google and type your "search words + ACN" or "search words + latitudes" and find older conversations that way. I do both. If I'm looking for a post by a certain member, or I want to use a date range, I use the forum search tools. If what I'm looking for is a few years old and is more vague, i use google.

My son did three steroid tapers (3 weeks each time) in the two+ years we thought he only had Pandas but also had undiagnosed lyme. In two of the tapers, he saw great relief of his symptoms. Unfortunately, the relief was temporary and things declined within a few weeks of finishing the taper. In the third taper, he actually got worse and I stopped the taper after only a few days. When he was finally diagnosed with lyme, I asked my LLMD why my son got better with prednisone if it was bad for lyme. He speculated that sometimes the pain and symptoms you get from inflammation is so great, that when you take a powerful anti-inflammatory like prednisone, you feel this sigh of relief. Over the course of a few days or weeks, the immune system probably wasn't suppressed enough to make a difference in the lyme war one way or the other yet the relief was so very welcomed. He went on to say that if we had done prednisone more often or for longer periods of time, then it may have done harm and allowed the lyme to get a leg up. And he wasn't about to give us more of it the next time inflammation was a factor (e.g. during a herx). But in his opinion, while he didn't like it as a drug, he didn't feel we'd done some major harm in the times we'd used it. That said, if you have confirmed lyme, I'm not sure why your doctor would be telling you to use it. It's not going to give you lasting relief as ling as you have an active infection. I personally wouldn't but I think it depends on how bad things are for your son right now. My son saw great relief within a day of starting prednisone his first two times but I stopped it on our third time when it instead made him hyper, edgy, and generally not feeling well. It's supposed to bring relief. If it isn't doing that, why bother?

Good digging! But I still have to wonder about your first doctor's advice to avoid anything with the name "strep" in it. I know some here report that yogurts with strep thermopolis has bothered their kids. I don't know if these same kids were bothered by leaky guts, by sugar, by infections at the time...it's never bothered my kids but I also know everyone is different. Since it doesn't seem like a big deal to have to exclude strep-strained yogurts from your diet, it's understandable for someone to want to err on the side of caution. But in the case of anti-yeast meds...well, there are only a handful of them. And since our kids are on multiple abx for multiple years, I think the need for anti-fungals is pretty significant. So to exclude the gentlest, least harsh on the liver medication based on its being derived from something that has strep in the name - well, I think I'd want some scientific explanation of risks rather than just a "better safe than sorry" mindset not backed up by a logical discussion of details. I wouldn't want to throw the baby out with the bath water. My understanding, and I admit it's a bit rusty, is that Cunningham's theories of molecular mimicry go like this: Group A streptococcus bacteria have an M protein on their outer membranes (they have many proteins but it's the M she's singled out). This M protein closely resembles an M protein on the outer membrane of certain cells in the basal ganglia. (There are similar M proteins on certain heart cells, which is thought to be the source of molecular mimicry in rheumatic fever). Cytokines, acting like blood hounds, scour the body looking for the tell-tale finger print of this M protein so they can signal to T-cells specifically trained to kill strep bacteria and like balloons on your mailbox to signal the site of a birthday party, the cytokines find a very similar looking M protein on the basal ganglia and signal for an attack on self. This theory isn't proven to the satisfaction of naysayers, but it seems like a logical theory. Lyme has a very similar M protein on its outer membrane when it's in its rod or spirochete form. This is why Cunningham, in work done about a decade ago, also mentions lyme as a source of an auto-immune response. It is my understanding - and I could be wrong - that Group B strep does not have this particular M protein and is therefore not a trigger for molecular mimicry or a Pandas flare. So it's not clear to me that other organisms with strep in their name are necessarily a trigger either. I think you need to understand the make up of each strain and can't just rely on a name. Could strep thermopolis or strep nousei have this M protein? I don't know. Maybe. And like I said, I can't see the harm in avoiding strep thermopolis in yogurt to play it safe. But I'm not comfortable taking an effective anti-fungal like nystatin out of my toolbox simply because the word "strep" is in the organism that is used to derive nystatin. Nearly two-thirds of antibiotics produced from natural origins are also derived from streptomyces species. (tetracylines, neomycin,clarithromycin) and clavulanic acid - one component of augmentin, is derived from Streptomyces clavuligerus, So is it worth not treating a yeast infection based on nystatin's family tree? It's helped my son a great deal. But we all have to follow our own instincts and truths.

My son did just fine on abx for 4+ years but at the end of treatment earlier this year, at the time he probably didn't need abx anymore, he developed gut issues doe to yeast. So since your son is already susceptible, I think you have a valid concern. You can get Stephen Buhner's books http://www.amazon.com/s/ref=nb_sb_ss_c_0_4?url=search-alias%3Dstripbooks&field-keywords=buhner&sprefix=buhn%2Caps%2C185 and look for an LLMD who's knowledgeable in using herbals. It's not clear to me if herbals are smarter than abx and somehow kill bad bacteria without killing good bacteria or if they present similar "kill everything in sight" risks. Buhner's books are on my Xmas list so maybe I'll get my answer in 2 weeks. For my son, we've used odorless garlic, nystatin, diflucan. To protect the mucus lining, we're having good success with l-glutamine and digestive enzymes. The probiotics I've used with success (in doses of 50 billion CFUs) are CP-1, Theralac, Truflora, and Kirkman's Bifido Complex. We stay away from Sacc Boullardis (aka Florastor) as my son reacts badly to it. But others find it well tolerated. In hindsight, I wish I'd paid more attention to the gut all along. But also in hindsight, I'd say cleaning up the yeast issues after the parade is far preferable to the insanity of lyme and I'd do it all again in a heartbeat. I think it depends on how sick you are, for how long, how healthy your diet is...but for us, the harm from abx was far less than the lyme itself. It's a valid concern but I think there are things you can do to mitigate damage as you go along. But you're right, it's not a perfect solution. There are certainly trade offs.