LNN

I don't have a medical reason to explain it but my DS10 doesn't do well on Sacc B. We've tried it for two extended trials and both times, he had excessive anger, impulsivity, age-inappropriate behavior - the very same symptoms he gets with yeast. When I've stopped the Sacc B, the issues resolved. So we just avoid it. I have links to sites about how good Sacc B is but for us, it just doesn't pan out. So we use a blend of different probiotics and take them at bedtime, 2-3 hrs away from abx. For yeast, you may very well see a die-off for the first week - an increase in the behaviors. You may want to look into garlic or GSE as a preventative once you're done with the diflucan. Otherwise, the yeast can just come roaring back. We've been using garlic for 10 months (one 1000mg ordorless pill/day) and haven't had any yeast problems since, despite 2-3 abx at a time (DS has Lyme).

THIS PAPER SHOULD BE PRESENTED AT AAP CONFERENCE !!! EXCELLENT AND PRACTICAL! Can you tell me what it says in plain english?? Sent it to the school psychologist for a translation but haven't heard back. Neurotransmitters, I get. Psych testing terminology, not so much.

TPotter - I didn't take the poll b/c our treatments have gone beyond "traditional" PANS treatments - e.g. in addition to abx for Pandas/lyme, we've also treated KPU and methylation and convergence insufficiency. So to say "PANS treatments helped these issues" feels incomplete in my case. Things are too intertwined for me to boil it down into two questions. But...didn't know if you've seen this paper from Storch et al from 2011 http://psychiatryonline.org/data/Journals/NP/4399/jnp00411000391.pdf (thanks EAMom)

I use the Source Naturals tryptophan. I use NOW when I can, as they're often cheaper and they inspect their suppliers. But once in awhile, one of their products doesn't seem to work as well as another brand. Tryptophan was one of them. So then I'll move up to Source Naturals as my next step. If your DD can swallow pills, I highly recommend the psyllium husk in capsule form. They're a grey/brown, size 0 capsule. Pretty easy to swallow and a lot easier than trying to drink the stuff.

Chlorella is used as a detox agent because it binds to toxins. So taking a lot of it could bind you up and cause constipation, the same way activated charcoal can be binding. You need to drink ALOT of fluids when you use it. I know some here and on the lyme forum swear by chlorella but I personally didn't care for it. Aside from the cost, it's a lot of pills to add to an already large daily pill load. My other concern is that it's harvested primarily in the China Seas and around Japan - between pollution and radioactivity, I didn't feel compfortable that I could be sure I was getting a safe product. It felt odd to use a product to soak up toxins when I was worried that the product itself could contain contaminates. Maybe being paranoid, but wasn't taking chances. If your son feels better off it and you were never happy with his response while on it, then IMO, listen to his body.

Nice price. I may do it as well. Still never did the kpu test though. one more question if you don't mind- can you tell me how much tryphotan (sp?) to use on a 70lb child. I need something to help my daughter with her sleep. Melatonin, benadryl, calming solutabs, all seem to be making her too irritable in the morning. Sorry if you gave this info to me before - my memory is gone with the wind these days. I give DD (55lb) and DS (85 lb) the same amount if they have a lot of anxiety, I give a full 500mg capsule of tryptophan. If they have mild anxiety, I split the capsule and only give 250mg (I have a bag of empty size 0 capsules, so I empty half into an empty capsule and save that one for the next dose - but you can also empty half a capsule into a food (the creme of an oreo cookie works for us) and save the half-full capsule for the next dose). I'd start her at 250mg an hour before bedtime. Then try a whole capsule if you need to. The conversion goes like this tryptophan=> 5HTP => serotonin => melatonin So some of the tryptophan will get converted into other things and used up before it ever becomes melatonin. One thing I do when the kids are a little anxious over several days is to give 250mg in the morning and 250mg in the evening. This keeps them a bit more even. FWIW - I don't like melatonin either. I too feel a little cranky in the morning. It helps me fall asleep, but I wake not feeling as rested as I "should". I have no idea why but I can sympathize with your DD. It's just a different quality of sleep when I use melatonin and I only use it for serious insomnia. That said, I don't take tryptophan for sleep, so not sure if it would have a similar effect. When I take tryptophan, it's during the day to fight anxiety. I've not used it to induce sleep for myself. Good luck!

It's a one time fee.

It's a genetics test kit https://www.23andme.com/ Tests almost everything Yasko tests for (with a few notable exceptions in the sulfur area) but it's only $99 vs. Yasko's $495 test. The down side is that 23andMe gives you a lot of raw data that you have to try to figure out yourself (but there are supposedly apps and free online tools you can use or I know of someone who runs a Fb support site who interprets/teaches you for $50). Yasko gives you a write up and interprets your results for you. It's a saliva test. Results used to take 2 weeks but when they dropped the price last month, they got bombarded and results are now taking 4-6 weeks. I'll be ordering my test for both kids next week. Have seen some really impressive improvements from supplements that work on their known issues (e.g. KPU and MTHFR) and think I might be able to get them really close to the finish line by having specific info on other methylation blocks - certainly cheaper than buying supplement after supplement and "hoping" they help. You didn't ask but FWIW, we use NOW Foods Psyllium Husk capsules http://www.amazon.com/Foods-Psyllium-Husk-500mg-Capsules/dp/B0013OW2KS/ref=sr_1_1?s=hpc&ie=UTF8&qid=1357861793&sr=1-1&keywords=now+foods+psyllium+husk+500 Only $0.03/capsule. We each take one/day away from abx but with other supps like probiotics (there are only so many hours in a day - I picking my battles). Psyillium is basically mashed up corn silk/husk. You should drink a decent amount of liquid during the day, which helps the psyillium expand and it's roughage helps to cleanse the colon as it passes. It doesn't absorb toxins the way charcoal, clay or chlorella do. But it does help cleanse. It serves the same function as miralax or TruFiber - basically the same stuff.

Just fyi - my DS gets agitated and hyper and foggy on Sacc B. No idea why but we've done multiple trials on it. So we use Truflora and Theralac, which are just regular probioitcs For natural anti-yeast, we all take one odorless garlic gelcap daily - had an initial flare of silliness/impulsivity for a week and have been good for 10 months now. Grapefruit seed extract also helps, tho we've not had to use it.

Having been at this for 4 years, I no longer think his reaction to prednisone can rule out Pandas nor can it confirm it. It is a tool to manage symptoms, in my opinion, not a tool for diagnosis. Let's say your son has Pandas or Pans. Let's say his infection is not vulnerable to augmentin (let's say it's a virus or a bacteria like Lyme than can be resistant to a mono-therapy antibiotic). So you give prednisone and because the infection is still there, it's still fueling inflammation. Either the inflammation is too great for 5 days of prednisone to do much or you have other sources of inflammation like mold, or some other factors are at play. A poor response to prednisone means it wasn't an effective tool. It doesn't mean, in my opinion, that the neurological problems aren't the result of PANS or Pandas. On the flip side, be aware that prednisone can worsen tic symptoms in those without an autoimmune source of tics. So it requires some consideration and you should be comfortable that Dr K is fully aware of your son's history and any concerns you may have before moving forward. (not saying not to go ahead - only to be comfortable with it first). I'll throw out one other consideration. My son has had wonderful responses to prednisone and other times it's done nothing for him. It has generally been very helpful for OCD but tics have taken much longer to subside and they did not go away because of prednisone. They went away as his body was able to clean out infection and the toxins the dying bacteria released. So for him, a focus on detox has been extremely helpful. He takes B6, which helps the body make glutathione - the mother of all detox. He takes milk thistle for his liver. He takes additional supplements during flares. If you have concerns about prednisone, you may be able to discuss IV Glutathione with Dr K as an alternative. But if your only concern is that your hopes will be dashed, I'd set those aside. I don't think a poor response to prednisone is a rule-out.

Thanks you guys! I was at one of the Yip presentations that year - can't recall if it was the same one or one for kids where she talked about always needing to take a picture of her sister to preserve memories because her OCD told her that her sister was going to die the next time Jennie let her out of her sight. PowPow - no presentations for me - at least not nationally. I'm pulling together a presentation for educators right now and in the past two days, have gotten two groups to say they want me(& my new boss) to make presentations to their staff in Feb & March. As a hand out/leave behind, I'm going to make a list of "one liner" examples that a teacher or parent can refer back to and remind themselves of some of these ideas and hopefully draw from the empathy well. I'll post something when it's done.

http://www.haaretz.com/news/features/strep-throat-and-ocd-are-linked-israeli-researchers-find.premium-1.492692 Home News Features Strep throat and OCD are linked, Israeli researchers find Researchers at Tel Aviv University discover that the childhood exposure to the bacteria streptococcus A, which causes strep throat, can also damage brain function, leading to obsessive-compulsive disorder later on. A common microbe that leads to childhood strep throat, long seen as an irritating but easily treatable virus, can have menacing long-term effects on brain function, Israeli researchers have discovered. The same germ that causes the sore-throat and fever-inducing sickness in childhood, the researchers found, can manifest in obsessive-compulsive disorder (OCD), an anxiety disorder marked by repeated and intrusive thoughts that can trigger hording, obsessions and intensely repetitive behavior. The results of the study, which was conducted on young rats, will pave the way for the development of new OCD treatments. Scientists have been examining the connection between OCD and childhood diseases, including throat infections, for more than 20 years. This most current study, however, led by Prof. Daphna Joel, head of the psychobiological department in the Laboratory of Behavioral Neuroscience in the Department of Psychology at Tel Aviv University, pinpointed the route that caused an outbreak of the disorder in rats. After exposure to streptococcus A, the microbe that causes strep throat, the rats displayed OCD behavior. In the study, which was conducted as part of the doctoral thesis of Lior Brimberg of the Department of Psychology, and in cooperation with Prof. Madeleine Cunningham of the University of Oklahoma, the rats were injected with streptococcus A microbes. They developed antibodies to the microbe, and were later injected with a substance that would simulate the transfer of antibodies to the brain. The researchers found that after penetrating the brain, the antibodies attached themselves to three regions in the brain, and were also connected to changes in the level of neurotransmitters in the brain. Compared to a control group of rats that had not been exposed to the microbe, the researchers noticed changes in the behavior of the rats in the research group. Among other things, they diagnosed disturbances in the rats' balance and coordination, which were reflected in difficulties in moving toward the cage on a board and in using their forelegs to pick up food served to them. They also observed standard obsessive behaviors among the rats in the research group: When you sprinkle water on rats' stomachs, they tend to groom themselves, but the rats in the research group engaged in self grooming for a prolonged period of time, in an obsessive manner. The findings were recently published in the journal Neuropsychopharmacology. The research was groundbreaking in its ability to highlight the link between a childhood illness and an adult disorder, Joel said. “It’s almost impossible to show how strep can lead to OCD in humans ― almost all of us, even very young children, have been exposed to the bacterium at one time or another," she said. "Therefore the description of the model in rats is of great significance." In a later experiment, the researchers noticed that the streptococcus antibodies became bound to dopamine D1 and D2 receptors in the brain, a finding that will likely aid in development of treatments for OCD. "We have yet to examine whether the antibodies cause the activation or the blocking of the receptors, but their effect on the receptors will help in the development of new medications for OCD, which is liable to be caused by the route described," Joel said. In the 1980s, the scientific community first realized that most sufferers of obsessive disorders, which are marked by prolonged hand washing and overly meticulous attention to cleanliness, had previously suffered from strep throat. They also found that the same group carried a high concentration of antibodies to the streptococcus A microbe in their blood. The phenomenon was later named PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus), which appears several weeks to three months after the strep throat. The phenomenon includes another disorder attributed to the infection, the appearance of tics. The research findings emphasize the importance of proper treatment of strep throat in children, with use of antibiotics in the case of a streptococcus A infection. Even more crucially, the researchers call on parents to be alert to the development of OCD in children after an acute sore throat. Joel implores parents to give their children a low dosage of antibiotics in addition to psychiatric medications if they suspect a disorder has developed as a result of strep throat. Researchers remain undecided on whether or not the OCD caused by strep throat will disappear with time or turn into a chronic condition, and as such have not yet ruled on whether or not antibiotic treatments should be for a limited time period or for a lifetime.

My son had a negative reaction to tamiflu 3 yrs ago when H1N1 first hit the scene. After 1 dose, he developed clonus movements and described vertigo and was a little delirious. We discontinued and these issues resolved w/in 24 hrs. My daughter tested negative for the flu last week but it sure looked like she had it - 101 fever for 2-3 days, congestion, unable to get off the couch for 5 days, not wanting to eat or drink. Tested her at the pedi - negative for flu - or at least for whatever strains their test looked for. To help her sleep one night, I gave her OTC children's cold medicine every 4 hrs as directed. She too developed clonus movements, got super spacy. Scared the bejeezus out of me. Got a rush appt with a neurologist the next day, who looked at the video I took, and felt it was probably an adverse reaction to the cold meds - anticholinergic toxicity that lowers dopamine too much and causes movement issues. It resolved w/in 24 hrs, tho DD remained moody/depressed/anxious over the weekend. (She was happy and calm this morning). So maybe I just have hyper-sensitive kids. But the moral of the story is that if you see a negative reaction, if you stop the tamiflu, the symptoms should resolve. But do keep a close eye. There have been reports of serious behavioral reactions. Guess you need to weigh pros and cons depending on how seriously the flu is impacting your son right now.

Yeah Karen, I thought about telling them some horrible story, like "imagine your spouse is on his death bed and you need to deliver a speech to the governor and smile for photographers and...." but not sure how graphic or morbid I want to get. It's one thing to illustrate a point, but another to get people so upset that they miss the other 95% of the message. One idea for explaining how people with obsessions/rituals get upset when rituals are interrupted - how many of us take a shower and do things in a certain order. I personally start with my hair, then my back, etc. Have you gotten halfway through your shower and not been sure if you washed the body part you always start with? Do you shrug and move on, or do you re-start your shower routine from the beginning? I re-start. That's what it feels like for someone whose ritual is interrupted. Or I imagine how it feels for someone who has autism or aspergers and they need things in order, with structure. Mess that order up and they can't move on until order is restored. For the urinary frequency, where teachers always say "but he JUST went!" - How many of us women (sorry Dads) have gone to the bathroom then walked out of the bathroom, sneezed/coughed/laughed and wet our pants - even tho we JUST went a minute ago. Our kids get that urge and worry about having a "leak" and so need to return to the bathroom to make sure they're really empty (part physical contraction, perhaps part OCD "checking" ritual). So what am I missing? OCD - eyebrow, honey, loop tape of intrusive thoughts ADHD - may have my phone alarm go off while I talk over it, or make an audio of various noises (birds chirping, kids at a playground) to play while I talk over it Sensory - tulle on the back of your shirt, sound of fluorescent light amplified, pebble in shoe Tics - talk about itches, yawning, the urge to sneeze Dysgraphia? - writing with your opposite hand? memory/cognition loss - ?? talk about senior moments? Trying to take the SATs with a bad head cold? Rage - remind moms of how we've all lost our tempers over things we knew were stupid at the time yet yelled anyway? PMS? Anxiety - what are things we, as adults, dread doing and try to avoid? What makes our hearts pound?

No - I don't want my audience thinking I'm crazy by bringing up "possession". I'm not even trying to explain Pandas. My goal is broader. I want to teach teachers what it feels like to have a hidden disability - regardless of cause of label. Remember Doug the Dog in the movie "UP" when he's talking and all of a sudden he looks away and says "Squirrel!" - totally distracted by the sight of a squirrel. That so explained ADHD to me. What I'm looking for is short exercises that leave someone with an idea, a feeling, that will come back to them when they're in the shower, or in the classroom a week later, or while they're grocery shopping. Give them "AHA" moments of understanding. Not trying to educate them about any particular disease or its cause or even it's treatment, as teachers aren't really in a position to tell parents how to treat their kids. What I want is to give the teacher an idea of what any of these symptoms feels like to a child and help them feel empathy. For example, I've tried to get some adults to do the eyebrow thing and they immediately say "No way!" with a little fear in their body language. My first reaction is to try to goad them into it, because I so want them to experience my "lesson." Which is the same thing a teacher is tempted to do when a child won't participate in a lesson - they try to belittle the fear or feelings the child has with an "oh, it won't be bad, you'll see" which of course causes the child more fear and gives him a feeling of not being understood or respected, feeling powerless and wanting to avoid even more. I want the teachers to understand what it feels like to be goaded when they have a fear, so that maybe next time, they'll be more sympathetic. So this isn't a Pandas-specific class. This is more general. Emmalily- what sort of intrusive thoughts loop would you create - a loop of "you are a bad person, you have no talent, you're dumb..." or would you go with more extreme thoughts?

For about 2 years, I've had a dream of developing an "empathy" course for teachers to help them understand what it feels like to be a kid with OCD, tics, ADHD, etc. I'm finally in a position to make this a reality and thought I'd ask for your ideas. In this class, I plan to have teachers experience the discomfort of each symptom and then educate them - not about Pandas specifically, but on each symptom as a condition unto itself. So "here's what it feels like to have OCD" - now here's 5 min of info on OCD, how to treat it, what ERP is, how to help a child cope in the classroom..."here's what it feels like to have ADHD" - now here's 5 min of info on ADHD and coping ideas... The goal is only to help an adult realize that "just stop doing xyz" isn't very helpful to anyone. To get them to apreciate just how hard it is for a kid and to drive home the point that behaviors aren't acts of rebellion. For OCD, I will have everyone put their finger on one eyebrow and rub the hair toward the bridge of their nose (i.e. in the opposite direction the hair normally grows/lies). Then don't fix the hair for 2 minutes and try to concentrate on what I'm saying, not on the discomfort of the eyebrow. This is what it feels like to have "feels right" OCD - you just need to make things feel right before you can concentrate on something else. Next, I'll have everyone dip their index finger into a cup of honey. Rub fingers together. Then leave your fingers sticky for 2 minutes while needing to write, shake hands, use an object that's recently been made sticky by someone else - this is what it feels like to have germ contamination OCD. You just have this overwhelming need to clean your hands. For sensory processing, I'm going to pin a small, bunched up ball of Tulle onto the back of your shirt and ask you to concentrate on my lecture as you get annoyingly scratched by the Tulle. I may put a pebble in your shoe and tell you not to fidget with it. I may play an amplified tape recording of the hum of flourescent lights. For tics, I'll talk about how people can get itchy just from the power of suggestion. I'll go on about how just talking about being itchy can make you want to scratch your nose or cheek. How the need to scratch can become very distracting. Yes, you can suppress the urge to scratch for a time, just like you can suppress a tic for awhile. But the distracting urge to scratch doesn't go away. Then, when I finally tell you you can scratch, you'll probably have the need to scratch like crazy, just like the way someone with a tic will tic like crazy when they finally get to tic in a safe place. I need ideas on how to make someone experience ADHD, anxiety, "senior moments" where you knew something but now can't recall it, rages, etc... Does anyone have any ideas on how to make someone experience these symptoms?

So good to hear from you and hear about the hard-won improvements!!!! I hope 2013 brings you much deserved healing - on all fronts :wub: :wub:

The child (my son) I referred to in my first post does not have an MTHFR issue. My other child does. However, I'll be doing a 23andMe genetic test this month and suspect I'll find other mutations that impact my son - he too has a big problem detoxing (thus the tics). For detox, we use alpha lipoic acid (a glutathione precursor), B6 in the form of P-5-P (part of KPU treatment), resveratrol, milk thistle for the liver, vitamin C and pysillium husk capsules to keep BMs regular. Epsom salt baths don't seem to do much for him. We also use motrin in the mornings and during flares, 2-3 times/day to manage inflammation. We have used charcoal or bentonite clay (both in capsule form) but can't say I saw any change. It's one of those things I give to make myself feel better in a panic. But I had to take my daughter to a neurologist yesterday (long story, not related to Pandas or lyme) and the subject of using charcoal came up. She said they only used charcoal in extreme toxicity situations because charcoal can mess up electrolytes and create its own problems. So if they felt a toxic situation would resolve on its own, they avoid charcoal. Now, this was from a very conventional practitioner and did not address a chronic infection/chronic toxin release. I know LLMDs feel quite differently. But thought I'd toss it out for consideration so you can consider both sides. here's an article on glutathione http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html - any supplement you can take to help the body create glutathione might help - or IV glutathione if your LLMD will do it. You might also want to read Shoemaker's info on mold detox. Even if you don't have a mold problem, much of what he says about helping the body get rid of toxins applies to more than mold. http://www.survivingmold.com/treatment and I really like this article http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html

We've had this a few times. My DS was once a big ticcer. He is now tic free unless we get aggressive with abx (like using tindamax or using 3 abx at once). Tics generally subside within 2 weeks if we put a big emphasis on detox (alpha lipoic acid, resveratrol, milk thistle, activated charcoal if we can fit it in), motrin 2-3x/day... if they don't subside, we discuss reducing dose, pulsing or backing off the offending abx for awhile. For my son, the tics seem to come when he can't eliminate the toxins quickly enough. Unfortunately, it also seems to bring behavior issues, loss of impulse control and it hurts his friendships and school reputation (because of the erratic/mean behaviors, not b/c of the tics). That's the biggest reason I tend to slow things down when I see tics. They're the canary in the coal mine that tells me we're moving too fast.

First, go easy on yourself. Stop feeling pressure to bring your family into situations that you know will be stressful. This is not the time to educate and you should stop feeling like you need to apologize for your or your son's ability/inability to control a medical problem. It's hard enough to cope with just you and your son in the room. I personally wouldn't make it any harder than it needs to be. Education, if you still feel the need, can come later. Right now, just focus on smaller things, like getting through the day. Your son's sense of safety and emotional needs come way before what acquaintances think of your parenting skills. Second, I agree that you should make a list of additional things to look into: Things you can do a blood test for: yeast (can test for antibodies) viruses (Epstein-Barr, HHVs, coxsackies, chlamydia pneumonia) mycoplasma pneumonia lyme C3D - a measure of how activated the immune system is - indicates current infection of some sort tho it won't tell you what kind methylation issues (methylation is a kind of metabolism of certain vitamins and amino acids, directly related to proper production of neurotransmitters). If you have a genetic mutation, you may see behavior issues. Any Dr can test for MTHFR - a common genetic mutation that can be tested by any lab Things you can investigate: mold (bathrooms, under sinks, basements, attics, near windows that may be leaky) pyroluria (aka KPU) which is a zinc/B6 deficiency http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf CBT/ERP therapy to help with coping strategies (I HIGHLY recommend this - it makes a huge difference in your mind set) detox, detox, detox I think I'd immediately address the possibility of yeast. You can ask Dr T for a prescription of diflucan. Or you can try a daily dose of odorless garlic plus probiotics. Some people find success with Sacc. Boullardi - a yeast-based probiotic that doesn't get destroyed by antibiotics but competes against the bad yeast and crowds it out. However, some kids are sensitive to Sacc B and it makes them act up. So I don't think now is a good time for a trial. Put it on a sticky note and come back to it when you're more stable. For now, just give at least 30 billion CFUs of a good probiotic, plus either the garlic or diflucan. With yeast, you may see an increase in behaviors for up to a week as the yeast dies off - more impulsiveness, more silliness, more temper, more tics. The toxins from the yeast die-off cause this. But it should subside. Next, I'd add a detox protocol. If the body is busy killing stuff, you need to make sure the garbage trucks are running well to get rid of the dying cells and toxins. B6 is essential for the body's detox system. It's a precursor to glutathione - the master anti-oxidant. I'd also add either alpha lipoic acid or resveratrol. To absorb the toxins, look into activated charcoal or bentonite clay. For mold/allergies, while you hunt for sources, you should focus on the rooms your DS spends most of his time in. Wash bed linens in hot water every week, take any stuffed animals, pillows...put them in the dryer on high weekly. Consider allergen covers for pillows. There's a spray you can use for carpets that inactivate dust and pet dander allergens http://www.allergystore.com/allergencontrol.htm On the topic of Lyme, I'd go to the Lyme forum and read the topics pinned under Helpful Threads, especially the articles on lyme testing. I believe Dr T still relies on standard western blot labs, which are unreliable. But I don't want to bog this thread down with a full discussion. Being from NY, you should definitely look into it. Many of us have found lyme as an underlying issue. But you can search this and the lyme forum for in-depth discussions or you can PM me. Same goes for methylation. It's too big a topic for this thread. Shelia, the owner of this forum, will be publishing an article in her upcoming newsletter. You can contact her for a subscription and you can wade through all the threads on this forum. For CBT/ERP therapy, search the forum for posts on the topic by Meg's Mom, SmartyJones, DCmom, MomWithOCDSon (sorry - I know I'm forgetting some others). It will really give you and your son a common vocabulary and tools to help you both feel more in control, better allied to fight a common enemy. It's hard to do but can change the dynamics and put you on the same side of the battle. Ok, that's more than enough for now. Try to be methodical. Attack one things at a time, add one medication or supplement at a time, or you'll drive yourself crazy. if you add something and see behaviors get worse, give it 5-7 days before deciding to quit. It could be that what you've added is doing its job and you're seeing a herxheimer response. If things get way worse, back down on a dose rather than abandoning it altogether. (exception to this would be any sort of allergic reaction, in which case you'd stop immediately). I know it feels like H**l on earth right now. But with each layer you peel away, it gets better. This is a marathon, not a quick fix. But I think nearly all of us old timers will tell you it gets better. Eventually, you find what works for your child. Have hope.

Zith seems to work well for some kids and not for others. But I'm guessing it'll be ok until you get home. Then depending on how he's feeling/behaving, you can always ask your pedi for additional abx if needed. Consider some zinc to help the immune system and some B6 and alpha lipoic acid for glutathione production. If you're seeing OCD, you can try using 5-HTP or tryptophan to bump up the BH4 cycle(my DS10/82 lbs takes 500mg 1xday normally, 2xday in a flare). If you find yourself using it for any length of time, consider adding tyrosine as well (maybe 250mg? to start), as it's best to use both for balance. For the tics, you can try taurine. This helps my DD when she's a little jittery. But what helps my DS for tics is detox - B6, milk thistle, alpha lipoic acid, resveratrol, activated charcoal. No instant cure but they help the tics subside more quickly. Not all tics are caused by toxins, but for my son, his tics come out when we fight an infection and the toxins from the dying bacteria overwhelm his transsulfuration/detox pathway. We see it when we treat strep and when we do cyst busting. The supplements I listed help him. And don't forget the motrin. If you're freaking, try some Gaba or tryptophan or valerian root (for you, not your child). I find I handle things better when I'm calmer and I've come to like Gaba - mild. I stay feeling normal but when I look back on the day, I realize I stayed calmer than I might have otherwise.

You may want to test for an MTHFR mutation. One possible reason for high B12 is that you could have a folate block. If your body isn't converting folate into methylfolate, then you don't have enough methylfolate hooking up with B12 and using that B12 to fuel the methylation cycle properly. So you think "high B12 - that's good" but maybe it's not. It could be a sign of a log jam. I know methylation makes a lot of people get that glazed look in their eyes. It's a complicated topic. But Sheila Roger's next Latitudes publication will include a long article on the subject. You may want to PM her and ask about a subscription (very affordable). You can find her contact info by clicking on her name on one of the threads she's posted at the top of the Pandas forum main page.

For the purposes of this forum, Pex and plasmapheresis are the same procedure. We had it done 3 yrs ago at Georgetown with Dr L. It did help at the time and despite the risks, at the time I felt it was worth it. Our insurance covered but have no idea how it was coded and I think the co. has changed its policy as of this fall and no longer covers it. My son did get better but as DCmom said - it helps with that particular exacerbation. It doesn't cure the disease. My son had undiagnosed lyme at after 8 weeks post-pex, he relapsed. A year later, we tried HD IVIG (lyme still undiagnosed at that point). It was a bad experience as it provoked a 10 week herx that was really, really rough. Pex will not clear an underlying infection. IVIG may help the body fight an existing infection but probably won't be enough to do it alone. You'd still need a long term strategy of antibiotics et al. Both are expensive and come with their own risks and recovery issues. My personal opinion is that if you only have a strep-induced issue, the infection is gone, your child is still in a bad place and you can afford it, that pex and/or IVIG are useful tools. But I have yet to hear of a child cured by either, no matter what any Pandas specialist says. Even those doing multiply HD IVIGs continue to give abx, supplements, therapies...that contribute to healing. I know as many kids who've gotten better without IVIG as I do who've done it. If you have an underlying infection or environmental issues such as mold, chronic allergies that keep the immune system over-activated, methylation issues - then neither Pex nor IVIG are going to fix those things. To do it over again, I wouldn't. Not that they're bad options for some, but for us, they were temporary and expensive. If you have issues beyond strep, I'd take your financial resources and put them toward an integrative doctor, LLMD or DAN instead. JMHO.

Yes, Nancy, I'd say that's right. As for whether it's safe to raise serotonin/dopamine in our kids, it depends. If you have anxiety and OCD, you could probably benefit from additional serotonin. And some physicians argue that you shouldn't supplement only serotonin. Due to the way the body oxidizes neurotransmitters, they suggest that you need to supplement both serotonin and dopamine, tho you'd use less dopamine than serotonin for anxiety issues and less serotonin/higher dopamine for depression issues. You can't supplement these things directly. Rather, you supplement with 5-htp or tryptophan as precursors to serotonin and tyrosine as a precursor to dopamine. However, it's all about balance. I've never heard of any sort of scent therapy helping with neurotransmitters and I'm not sure how it would be a long-lasting effect. But just because I've never heard of it doesn't mean much. My only caution would be that those who study methylation, like Bill Walsh and Abe Hoffer, would caution that over-methylators would react negatively to strong scents. Some over-methylators have an intolerance for perfumes et al and it can cause a great deal of agitation. So you might want to do a little googling on the topic to see if it applies to your own situation. Personally, I believe that the most effective therapy for "feels right" OCD is ERP therapy, perhaps supplemented with some amino acids like tryptophan and tyrosine, and getting to the root medical cause - whether that be an infection, methylation or some other misbehaving physical system. But ERP can make a big difference and gives you life long skills.

Hope - FWIW, my DD (1 mutation on C677T) tested with low homocysteine when I was accidentally overdosing her with methylfolate. It got the cycle working too well. So totally agree with your desire to go low and slow.