LNN

Give the amox a trial. If you're less than impressed, discuss a cephalosporin with the DAN, like omnicef maybe? There are lots of options.

When I was about that age, my family went to Howe's Caverns in NY. There's a part of the tour where you get into a boat and they take you along an underground river. Then they turn out the lights so you can appreciate just how dark it is inside a cave. My evil older sister whispered in my ear that there was a witch in the cave and they were going to leave me for her. For years afterward, I was terrified of the dark, had to sleep with a nightlight long after other kids my age and had separation anxiety. I do not have Pandas or any similar affliction. It was just a very powerful event that stayed with me for a very long time. If this is the only thing that raises a flag, I'd say it's just a kid with a powerful imagination and a particularly vivid experience.

Amox has worked for my son. Augmentin offers a broader defense. Zith does not work as well for him - he's gotten sick twice while on zith. So I think the advice to consider a different abx if the first doesn't work is good advice. I just don't think you can say X always works and Y doesn't. Some kids seem to do well with one more than the other. But only trials of each will help you decide which works best for your own son. For now, if it were me, I'd finish the amox and have him retested. Like others, we ended up having recurrent strep due to chronic infection (ours was in the adenoids) and needed a T&A. But cross one bridge at a time. It may be time to get on a waiting list for a Pandas doc.

Totally agree with you - I do think my son's zinc/B6 et al deficiencies play a huge role in his particular story and probably laid the ground work for Pandas. I think back to those "something's not quite right" moments in toddlerhood and think it was the pyroluria driving it all - long before strep or even infections. Also agree that for other kids, it could be histamine, toxins, etc. I only put my comment out there so it doesn't sound like we're saying there's no Pandas, no autoimmunity or that it can all be "cured". Sometimes when I've gone hot and heavy on this topic, I think I come across as if I think it's methylation instead of Pandas and I just wanted to be clear that that isn't the case. Just that for my son, "methylation" in the broadest, loosest sense of the word was a precursor and for my daughter, I think it's the whole enchilada. I too needed to know "why" and if someone couldn't tell me "why" I needed calculus, I really struggled to learn it. But if someone could've made chemistry come alive for me back in high school, all this would be so much easier for me now.

Her product is called Folapro and it contains 800mcg of methylfolate. I just ordered the pill for myself (for many reasons, I believe DD's mutation comes from me). I wasn't sure how well the pill could be quartered, so I ordered the liquid version for my DD so we can start at one drop/day. This will be about 250mcg - just a little over what a quarter pill would be. And we will build from there. In Dec/Jan when we started down this path, I bought Thorne's methylfolate in a 1g capsule and split the capsule between us. But it was hard to be accurate and it still meant starting out at 500mcg which is higher than I want. She was edgy from this but we had other stuff going on (high copper, EBV) and it couldn't tease out cause/effect. Now that she is in a much better place, I can stir the pot and know that only one thing will have changed and I hope to make this a better science experiment than the last one. Kim - FWIW - both my kids had wicked, evil colic. My DD especially, who continued to have GI issues, GERD, histamine...and is MTHFR C677T heterozygous. Like Fightingmom, I think her secret is tied up in clearing up her methylation imbalances, which may include additional blockages but I'm going to start with methylfolate and go from there. Try no to blame yourself. I too gave "baby zantac" to get relief from a cry that could shatter crystal and didn't stop for 23 hrs/day. The zantac never helped us, but sleep sure did. If you want to place blame, it should be on a medical system that gives doctors only a few hours of training on this stuff in all their years of school and residency. FightingMom - agree with you that for some, various mutations in genes that play a role in methylation/trans-sulfuration/krebs cycles could be key. But will also say that my son, who is way more "classic" Pandas has no MTHFR mutation. His puzzle piece was with zinc/B6. So it won't be a one-size-fits-all answer. But the implications that many kids could find their puzzle pieces somewhere in these four circles in the diagram still blows me away, even months after my AHA moment (ok, it was an expletive, not AHA, but you get the idea). When you're done digesting Yasko, look up Rich Van Konynenberg, who takes Yasko's ideas into the CFS world.

Regarding the advice that histadelics should avoid folate and B12...I too wonder if this is a blanket statement and comes from data/anecdotes collected before MTHFR research. If histadelics were found to be a group that predominantly has the MTHFR mutations, then this advice would make total sense to me. But rather than avoid folate, I'd argue that you should actually supplement - just using methylfolate rather than folate. Because most likely, you do have an excess of folate, because you're not "metabolizing" it, which results in excess histamine, no? So if you supplement with methylfolate, slowly building up, you'd be draining away the excess folate and reducing histamine, right? Or am I missing something? If excess folate/B12 means a blockage, then the rest of the methylation cycle will also eventually be inefficient, creating shortages elsewhere. The thing that makes MTHFR important is that it sits at a fork in the road - you not only need methylfolate to fuel the methylation cycle and energy, but you also need more methylfolate to travel down the other fork in the road and convert homocystine into (eventually) glutathione and down the trans-sulfuration pathway (detox). (talking about cycles 3 & 4 in this diagram) http://www.heartfixer.com/AMRI-Nutrigenomics.htm Some of the quotes above suggest doing a trial of folic acid and if you get adverse effects - that's proof you're a histadelic. I'd say it's "proof" you have an MTHFR mutation and need to be supplementing with methylfolate instead of folic acid, not proof that you shouldn't supplement at all. IDK - but I'll be supplementing DD with 250mcg of methylfolate (smallest dose I could find) as soon as the mail comes. Yasko predicts a short honeymoon followed by "adverse" response, which she says is a good thing - the cycle being replenished and starting to dump junk out of the system that's previously been gumming things up. The 'ol get worse before you get better song. We'll see...

Fixit - I never tried Luteolin. S&S posted about a negative response for her DD and two weeks after this thread, we tested and found pyroluria. Treating the pyroluria was really the key for my son, so I never had the need to go back and consider luteolin again. Not to say it isn't worth trying, but we just didn't need to go there. Hugs - never pursued the celery seed either. We were in a phase where we were sort of treading water - making progress, hitting walls, taking steps backward, then a little forward. So I did a shotgun type of research, hunting around for ideas. Once we found the pyroluria, everything else was put on a shelf.

Sounds like you have a plan. But if you eventually decide you want to try the l-lysine, you can buy smaller gel capsules and maybe transfer the contents into smaller capsules - i think you want "0" size. Also notice there are some inexpensive pill filler contraptions you can buy if the task seems daunting. http://www.amazon.com/s/ref=nb_sb_ss_c_1_7?url=search-alias%3Dhpc&field-keywords=empty+capsules&sprefix=empty+c%2Caps%2C161 You might also be able to get empty capsules at a local health food store. I hope everything starts to heal!

Congratulations on the writing job and internship!!! So happy for you! You've worked so hard - and deserve so much! FWIW - there's a mom who's not on the forum very often - JGMom I think - one of her sons has abdominal migrains and he's been helped tremendously by the corrects meds. If you ever need to compare notes, you can keep her name in mind or Pm me and I'll give you her email.

When I was in your shoes, I was able to find a sympathetic nurse practitioner at a CVS Minute Clinic who felt swollen glands and was interested in Pandas and I got a 10 day script. I think I did this twice while searching for a new pediatrician. It helps if you go in the evening when you can say your pedi is closed and forget to tell them about the negative throat swab last week (after all, for all you know, they didn't swab in the right place - swabs aren't exactly precise). You might also post on the lyme forum and ask about natural alternatives for antibiotics. It's not my area of expertise but I know there are certain things that are antimicrobial and may help. Some of the lyme moms have gone this route and may have ideas for you. I know you're not sure how you're going to make it until your first appt. but hold on. You can also focus on anti-inflammatories (motrin, resveratrol, curcumin, tumeric) and detox (charcoal, bentonite clay capsules, milk thistle, epsom salt baths, transdermal glutathione, alpha lipoic acid) to help the body get rid of the toxins associated with fighting chronic infection. These may not give you the same level of relief that abx gave you, but it's at least something. Also use this time to document his symptoms and maybe take some videos or collect a handwriting sample. These can be very powerful when meeting with a doctor. As for school, one idea is to send him but pick him up early. Sometimes when teachers see what you see, it helps.

No, there is no permanent brain damage. Quicker treatment tends to lead to quicker results, but it's not set in stone. Your DH is right - take a break from the internet. It's about balance. Yes, you need to get educated. But you need to attend to the rest of life as well. A lot of relationships get damaged if you don't figure out how to step away. Now, I know it's a consuming thing. I totally get that. You think about it in the shower, in the car, first thing when you open your eyes in the morning. But the permanent damage you're worrying about? It can happen to your marriage and your other kids if you don't give them a certain degree of attention as well. Success stories - I can point to plenty of them. Many are no longer on the forum - rebuilding that life they neglected while their kids were sick. Some of us are in "tweaking" mode where are kids are stable or healing but we still want perfection and continue to be on the forum for ideas or to give support. My kids have been non-functioning. They are now 95%. No one beyond my DH and I could ever see anything symptomatic right now. It's hard to say "my kid is healed!" because as soon as you do, they get a cold and you kick yourself for speaking up. But recovery is absolutely possible and probably more common than you'd think if your reality is only based on this forum. As for tying yourself up in knots about whether your son will get teased for his tics...I get that. My son was a big ticcer. He's had flairs that ruined his impulse control and he temporarily lost friendships. But he's also wiser and stronger for the experience and it's not about helping them avoid a trying time as much as its about giving them tools to help them cope with trying times. Focus on what you can control - his response to hard times - rather than things you can't control - like what stupid things come out of teens mouths. Consider speaking with the class to explain what's happening. Consider getting a 504 Plan that lets your son go to a quiet place - maybe the school psych's office - if tics get bad. Make an action plan for things you can influence. Consider taking 5-HTP or tryptophan for yourself. This is a long journey. You're no good to anyone if you burn yourself out in the beginning. Pandas is horrible. I have lived thru more things than I want to remember. But it's not cancer. Your child isn't a paraplegic. Not minimizing what you're going through. He will get better.

Nancy, Fightingmom is helping me give birth to a huge AHA moment on this SAMe thing. That sentence in the Jones link and the other link really caught my eye too. They just say "don't take it" but don't say why and it's driving me mad! Remember last week when I posted that I gave DD one dose of NAC for mucus and her anxiety went thru the roof for days? I've known that such an abnormal response was important but couldn't figure out what it meant. Now, if NAC is doing the same thing as SAMe (DD is heterozygous C677T) then fightingmom may have given me the keys to the kingdom. I had been supplementing methylfolate back in Jan. when we found out about the C677T but there was a lot going on and I didn't see much difference, attributed the bi-polar moods to high copper, and then she tested high on folate and I mistakenly figured it meant she was good in this dept (not realizing as S&S says that there's a difference between having folate in the system and being able to methylate it). Anyway, other things resolved (EBV) and we added tryptophan and she was doing really good. I've been thinking the tryptophan was working in the same part of the cycle as SAMe would. But now I find this diagram http://www.heartfixer.com/AMRI-Nutrigenomics.htm and see that SAMe is in circle #4 and tryptophan and tyrosine (which also helps her) is in circle #2 - the circle past any MTHFR blockage. After our LLMD appt on Tuesday and because of a few comments earlier this week from MommaKath and S&S, I realized I should re-start the methylfolate. On Thursday, I gave her 500mcg, which is what I gave her in January. Her anxiety was a little high but not super high. Yesterday, I gave her the whole capsule (1 mg) and she was Linda Blair. Angry, bi-polar, hysterical fear about having to go upstairs alone to get socks, too anxious to let the dentist seal her molars (we had to leave), aggressive, tearful - a complete mess. Reading this thread made it click. This guy even says it's a normal response for some http://mthfr.net/methylfolate-side-effects/2012/03/01/ So I still need to figure out why SAMe/NAC is an issue. But I'm so excited that this confirms that the MTHFR issue is my daughter's key, just as my son's adverse reaction to zicam ultimately led me to his pyroluria and associated zinc deficiency. I feel like an excited puppy about to wet the floor! It's killing me that we have family coming tomorrow and our winter of functional cleaning had to give way to a major spring cleaning today, so I won't have much google time. But will let you know what I find.

Hmm...worth putting on a sticky note...in the middle of changing/adjusting some things, so don't want to introduce another variable right now. But maybe in a few months...we have quite a few farms in town that might sell local honey. Thanks!

Denise - my understanding is that the A1298 is the lesser problem than C677. The workaround that Yasko suggests for A1298 is to supplement with TMG. I know it's a big time investment, but the best way to put it all together for me was to watch Yasko's presentations. I bought her book and DVD set but I suspect this link has very similar info.. http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1- It's quite long and you may need to watch in in more than one sitting or repeat a few times. It gets complicated. But you walk away with an appreciation for how everything can be intertwined. Hats off to your pedi for being willing to go here with you! If nothing from your testing gives you an AHA moment, you may also want to look into pyroluria, which is a $70 urine test from Vitamin Diagnostics. It's the one deficiency I've never seen on yasko's list. But here's some info on it http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf My heart breaks for you guys. Please know you're in my thoughts. Laura

Wow - can't believe you stuck with this - Thanks! With spring here, I was doubting my decision to stop shots. So far, no symptoms and apparently others in town are struggling. So the shots did help. But I think if allergies come back over time, I'll look into homeopathic options. I just feel like no one in the pharma industry is watching out for my kid. As a side note - frustrated with me search for a non-aluminum deodorant for myself (the naturals don't seem to get the job done), I cam across a blog that suggests using a dab of white vinegar. The lady at my local health food store used to be a buyer for Whole Foods and she says that you can try any of the deodorants they sell and if you don't like them, they'll take them back. Whole Foods is too far away from me, but might try the vinegar (if it doesn't make me smell like an easter egg). I'm nutty enough as it is. Don't need aluminum making me crazier.

Fightingmom - we are kindered spirits. Unfortunatley, my kids are "racists" and pre-judge anything that doesn't look like and taste like a Dorito. So for now, I am raising pill poppers but am slowly working toward the more natural, whole food delivery mechanisms. Last week, I went grocery shopping on April 1st. When I came home, my son went for the grocery bags and asked where the cookies were. I told him I didn't buy any junk food. That we were all going to eat only healthy foods. My husband turned pale as a ghost and started to speak when I winked at him (It was April Fool's and the bag of junk food was in the car). Much to my shock, the kids whimpered and then asked for some cheese and pretzels. Totally shocked and encouraged me! The cookies were still happily devoured but I'm finding that I may be able to ever so slowly ween them from the worst of the worst. In the meantime, "take your pills" is the most common phrase used in the house.

DUT - thanks for this. It supports what my doc told me this week when I asked if we should be supplementing calcium along with the magnesium. He felt that with the kids' diets being weighted toward calcium intake and low in D (due to New England climate as well as illness), that supplementing magnesium only, with D3 at a different time of day, would be better for bones and development. Always feels good to then read something that jives. FWIW - magnesium hasn't been our "silver bullet" - our miracle supplement is zinc/B6. But I think looking at the whole interplay is both fascinating and potentially very rewarding. I find myself taking some of the things we're using with the kids and feel so much better. Balanced nutrition = better health. Who knew?

Can't find a "contact us" or email for them. Can you post? Sent this to our school principal and psychologist and DS got a small smile on his face when I told him they were talking about him on Nick.

I had a very long lunch yesterday with a forum mom who lives nearby. We've both been on similar treasure hunts looking for the triggers for our kids, both of our sons have had tics. We've looked at Pandas, lyme, mold, detox, metals, yeast, mineral deficiencies... What we've found is that several of these things probably play(ed) a role and it's been a matter of whittling away. For my son, a T&A and getting rid of a chronic infection was a big step forward. Pex helped as well. But we also went thru an aggressive period of lyme treatment 2 years later and saw a burst of tics when he couldn't clear die-off toxins quickly enough. So tics may be one of the symptoms that show your son is struggling but the trigger for that struggle may not be one single thing. Instead it just may be his body's way of saying something's not right. But I agree that biofilms could be a factor. I know the term sounds "out there" but it's a very up and up and real thing. Here's a long article on it and how it plays a role in chronic illness: http://bacteriality.com/2008/05/26/biofilm/ It may be that your son needs to be on a different abx or a combo of abx and/or you may need to look at how his body handles toxins. This article also has a lot to offer http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html Biotoxins, and the inflammatory responses which they initiate, may be at the center of the illness. If a person is genetically susceptible to a biotoxin-associated illness, it is likely the case that the biotoxins themselves, rather than Lyme infection or mold exposure, are causing many of the symptoms being experienced. Even further, it is plausible to suggest that infection could be cleared, or the exposure entirely removed, and yet the remaining symptoms may be almost entirely due to circulating biotoxins. It comes down to a genetic predisposition which results in the body’s inability to remove these biotoxins. Long after the initial exposure or infection is gone, the toxins may live on. If Respiradol scares you (and I share your feelings), I'd continue to hunt down chronic infection and/or look at inflammation and detox. If your doctor only wants to use a psychotropic then it may be time to find a doctor who's more in tune with the approach you want to take. There are lots of options.

My daughter recently battled epstein-barr. For months, we tried a variety of anti-virals and treatments. After 4 months, the EBV still had the upper hand. We then tried l-lysine, which is an essential amino acid. You get it from legumes and healthy food that DD doesn't eat. Within days, she was off the couch and bouncing around. We used it for several weeks and she was able to return to school. So it may be something you want to google. Do note that l-lysine can reduce seratonin and cause anxiety. We did see this over time and used tryptophan for the anxiety. After such a long illness, I wasn't ready to drop the lysine until I felt it had put the ebv into remission. Might be something worth googling. You can get l-lysine at the health food store and maybe even CVS.

But most of us would hardly describe our kids as healthy and my kids' diets may be "normal" but it's far from balanced or full of nutrients. As for lab testing, nearly every source I've come across on the topic of measuring mineral and vitamin levels says that plasma is the least reliable way to measure. If you have a genetic mutation, such as MTHFR, or a genetic condition such as pyroluria, you can put a "normal" amount of stuff into the system and it still won't be enough. So I respect those who feel supplements are not for them but I would also encourage anyone who's intrigued to keep researching, as some have found supplementing specific things have made a world of difference (as Mary said, which specific thing may be very individual). But for some, a deficiency may be the thing that's holding a child back and I personally feel it should be fully explored.

DeeDee, what I've read is that the C677T is the more serious mutation for two reasons - first, this one directly effects homocystine levels, thus effecting risk of heart disease, stroke, macular degeneration... Second, it's the mutation effecting the primary methylation pathway. The A1298 mutation lies on the secondary pathway and generally effects GI issues (not that that's not important too). It's great that homocystine levels are normal! So that's a good thing. But think of the methylfolate as being at a fork in the road. One fork creates homocystine, which then goes further down one path. The other fork recycles methylfolate and methylcobalmin (B12) back into the methylation circle where it gets turned back into energy (ATP) and SAMe (some of which becomes seratonin). So not "metabolizing" sufficient methylfolate can lead not only to elevated homocystine but also lowered seratonin. How much supplementing you need is highly individual. It's really difficult to test for what's going on and so the best measurement ends up being observing what happens. MammaKath has supplemented for her son and seen great results. I've given my DD with the C677T mutation methylfolate and seen nothing dramatic. However, she often complains of fatigue, so I may supplement with Thorne's combo of methylfolate and methylcobalmin when it's time to reorder, just to see if she needs both. With my family history of heart disease, strokes and macular degeneration, it's a prudent thing for my daughter and for myself, even if I don't see OMG results. I agree with DCmom in that an MTHFR mutation is unique to Pandas or autism. But I personally feel that for kids who already have issues with seratonin, an MTHFR mutation is one more thing working against them and supplementing with methylfolate and/or methylcobalmin may be helpful. But again, I don't think it's a one size fits all answer. You just have to do a $17 experiment of one.

You cannot measure CamKII and the anti-neuronal tests at this time. The Cunningham study is closed and while they are working on a commercial test, I don't think it's available yet. No need to beg pedi for anything. It isn't available right now.

We've tested serum levels but they aren't particularly telling. I've read in a number of places that serum levels don't correspond to intercellular levels. We supplement because of the history of movement/tic issues and cognitive issues. We only use 100 mg/day which is one half of one horse-pill sized magnesium pill. The RDA for adults is 400 mg, so this isn't a huge amount. The way we settled on this amount is that we started out with 1/2 pill for ease of swallowing. It helped with their "regularity" a lot. Then I increased to a whole pill and we got loose stools. So we backed down to a half pill again (which is 100mg) and things "work" pretty well at this dose. Not particularly scientific but practical. We use magnesium glycinate. http://www.ehow.com/about_6538439_difference-magnesium-glycinate-magnesium-malate_.html Hundreds of thousands of chemical reactions continuously occur in your body. Each of these biochemical reactions requires an enzyme system comprising three parts: a protein, an organic compound and a mineral. Magnesium plays a major role in about 300 of these reactions, according to the National Institutes of Health. It is the fourth most abundant mineral in the human body, half of which is found in the bones. Approximately one percent is found in the blood and is absorbed through the small intestine. Magnesium is vital in maintaining normal nerve and muscle function, keeping steady heart rhythm, helping regulate blood sugar and promoting normal blood pressure. Supplements According to the National Institutes of Health Office of Dietary Supplements, foods such as halibut, almonds and soybeans contain about 20 percent of the daily required amount of magnesium. If you're not regularly eating a variety of foods that contain magnesium, you could develop a deficiency. Magnesium deficiency can result in vertigo, cramps, fatigue and irritability. Other factors that can contribute to a deficiency include certain antibiotics, poorly controlled diabetes and alcoholism. For these reasons, your doctor may recommend magnesium supplements. Glycinate Benefits This form of magnesium is less disruptive on the bowels than magnesium chloride, citrate and sulfate, which can cause diarrhea. Aside from these considerations, magnesium glycinate is five times easier for the body to absorb than magnesium oxide. Individuals suffering from malabsorption conditions like celiac and Crohn's disease will benefit from this form of magnesium. Older people, who are usually prone to magnesium deficiency, also benefit. Malate Benefits The malate form of magnesium is derived from malic acid, which plays a key role in energy production. Not surprisingly, magnesium malate will benefit individuals such as athletes, who would like to maximize their energy production, as well as those with musculoskeletal problems like fibromyalgia. People suffering from chronic fatigue syndrome or other circulatory and respiratory problems may benefit as well. Comparison Both magnesium glycinate and magnesium malate can provide the body with a sufficient amount of the mineral. Your choice will depend on your health and energy needs. For example, if you would like to feel more energized, magnesium malate is for you. On the other hand, if you would like to improve nutrient absorption, magnesium glycinate is the logical choice. The most important consideration is that you get enough overall magnesium. To be safe, consult your physician before starting any kind of supplement regimen. If you supplement with magnesium, be aware that it can interfere with abx absorption. Best to give a few hours away from abx. We give it at bedtime at the same time as probiotics. FWIW - magnesium and calcium are ying/yang. Over time, if you over-supplement with magnesium, you could develop a calcium deficiency. That's why you so often see Cal/Mag combo supplements. Different opinions on what a Cal/Mag ratio should be. I asked our doc about whether we needed to add calcium and he said he didn't much care for calcium supplements and felt that Vitamin D3 supplements were more important in building bones and helping the body make use of calcium. So we'll be sticking with a magnesium glycinate only supplement. But wanted to mention the calcium issue so you're aware.

Met with our LLMD today and here's his take on the subject- If you have a mutation, your methylation at that point in the cycle is probably compromised/inefficient but probably not non-existent. The degree to which it's compromised is unknown and probably highly individual (it would also be effected by other mutations you might have). If you test high for B12 or folate and you know you have an MTHFR mutation, you're probably not methylating properly and it's pooling up instead of being used. So supplementing with methylfolate and/or methylcobalmin (B12) would be appropriate.