LNN

My DD7 (48 lbs) were told 500mcg/day, for an adult, 1mg. But...we have tested folate and B12 levels and they are presently above normal for DD, so I am not supplementing at the moment. Doesn't appear to be needed. But will always keep some in the cabinet and will re-evaluate at times of illness, change in mental state or at puberty or pregnancy... Guess I've come to the opinion that I'm glad I know about the condition but it may not be something that always needs to be supplemented. It's a variable for us. On the other hand, adding tryptophan and tyrosine into her system has really helped DD so far. So her issue may be on the "supply" side of the methylation cycle, not on the "recycle" side.

If out of pocket expenses aren't a practical option, but you do have insurance, than ask one of your doctors to order a Western Blot lyme test - preferably thru Quest labs. A western blot looks for bands that indicate certain antibodies have been produced by the body. Different labs look for different bands. Igenex is a lab that looks for bands that are considered to be very lyme specific. But that probably isn't an option for you. Their basic test is @ $200 and many people get reimbursed by their insurance companies between 60%-80%, but you do need to pay up front and then hope for reimbursement. For now, given your situation, you can ask for a standard WB. If this standard WB shows lyme, then you can move forward based on that result. If it says negative, it may or may not be reliable, because it hasn't looked for certain lyme-specific bands(long and political reason why this is so). But it is covered by insurance and it's a place to start. You are looking into two "controversial" illnesses. So you may need to do as much testing as you can given your situation and then try to work with sympathetic doctors who are in-network. If test results point toward lyme, there are non-profit groups that offer financial support. If test results point toward Pandas, you may be able to print out Pandas documentation from here http://intramural.nimh.nih.gov/pdn/web.htm and here http://ocfoundation.org/PANDAS/ and work with Dr Kaplan to devise a treatment plan that's affordable.

Ad adult would take 400mg, a child 200mg. Pills generally come in 400mg capsules, so you could either cut in half and give 200 or give the full pill and give 400, or you could switch back and forth every other day... if you end up supplementing for any length of time, you will want to do periodic blood tests to check calcium levels. Magnesium and calcium are ying/yang minerals. When one goes up, it often causes the other to drop. So long term, you need to be watchful. It's why you often see Cal/Mag supplements. However, some of these are not well absorbed and it's not clear how effective they are. So something to do a little research on. How is she sleeping now?

Dr Kaplan is a highly respected authority on strep. I don't know where he stands currently on Pandas. I know that in the past he has taken a very conservative stance and in at least one publication, supported the naysayers. However, I don't believe he has a dog in the fight and may very well provide you with the support you've been searching for. I hope so. But if not, do not hesitate to consult with another doctor. Lyme - which can also include co-infections like bartonella, ehrlichiosis, babesia and mycoplasma - is a bacteria that can have an outer surface that sometimes looks similar to the outer surface of some strains of strep. Both conditions can trigger an autoimmune response, with the body attacking itself. Dying bacteria can also release toxins that produce symptoms - known as a herxheimer response. Lyme, co-infections, strep, and other infections can, in certain individuals, all lead to many overlapping symptoms. There are some kids who have an obvious strep=>symptoms which is Pandas. The recognition that other triggers can result in similar presentations has led to the new, broader umbrella of PANS. If a child has been sick for awhile, it's possible to have more than one trigger. My son has both Pandas triggered by strep and lyme. It isn't always a neat, clean answer. All of the infections I've mentioned respond to antibiotics. So you're probably right to be excited that your son has responded. I personally wouldn't let go of that, even though some doctors might not give it as much significance. But it may require some digging to figure out the infection trigger(s) which will then guide which antibiotic(s) and for how long. You may have stumbled onto a really important clue. But prepare yourself - the battle may just be starting. Answers don't always jump up and down and scream at you and doctors don't always share your enthusiasm. Dr K in Chicago is probably the closest to you. But my understanding is that he does not test for or treat lyme. Other Pandas doctors will require a flight. Another option is to consider a DAN (Defeat Autism Now) doctor, an integrative doctor or osteopath, or a lyme-literate doctor (LLMD) (people on the lyme forum can help you with this or you click on my screen name and send me a private message). The down side is that many of these doctors do not accept insurance. So you need to pay out of pocket and then submit your own claim to your insurance co. for usually partial reimbursement. But you can also waste a lot of time and money seeing doctors who won't be helpful. So it's a tough decision. You mention rage in another post, which can be seen in both tick-borne infections (especially bartonella) and Pandas. You might try giving your son motrin every 6-8 hrs for several days in a row to see if that helps. (Tylenol or other NSAIDs don't have the same effect - it should be motrin/ibuprofen). Give on a steady basis as best you can. Some kids have a surprisingly dramatic decrease in behaviors and improved mental focus when the inflammation is reduced. You can also consider magnesium for the tics. But only add one thing at a time or you won't know what's helping. Please let us know how your appt goes!

You'll get lots of opinions on probiotics. Some people give a little (10-20 billion CFUs) others give in the hundreds. I think it depends on the individual. If you have a child who's prone to yeast, you might need a lot of probiotics. If not, less might do it for you. It's something you'll just have to experiment with. My daughter used to have yeast problems even before using abx. So she used TruFlora every day for two weeks, and now uses it twice a week. Other days of the week we rotate between Theralac (30 billion) and Sacc Boulardis (5 billion). This seems to work for her. But you just have to tinker. The goal is no behavioral problems, no outward signs of yeast (thrush, vaginal redness, etc) and regular, well formed stools. You can also use yogurt, but the kind with less sugar, or kefir, if your child will drink it (mine would not). As I said, I don't have direct experience with myco p, but my understanding is a z-pak would not be enough. As for testing, my DD had a persistent cough while fighting EBV. I asked about testing but our LLMD said there's no easy way to test for myco ferrentans and the commercial tests for myco p, as Nichols points out, aren't always reliable. He opted instead to increase her zith from 125 mg to 250 mg daily and re-evaluate in 2 months. Since she responds to infections with neuropsych symptoms and she freaks with blood draws, this seemed like a reasonable approach. If she were older, or not allergic to the penicillins, augmentin and cephalosporins, maybe something other than zith would've been more appropriate. But we're somewhat limited in options. She also can't use doxy or minocycline as she's only 7 and you can't use those until all the adult teeth have come in, as those will permanently stain developing teeth.

Here's an article about myco p that might be helpful http://www.morgellons-uk.net/?p=467 I don't have direct experience, but my understanding is that it sometimes takes using more than one abx at the same time to treat myco and that not everyone responds to the same abx combo. Given the length of time your son has been fighting this, it's possible there's more than one infection - either bacterial or viral. Sometimes chronically ill people then get exposed to other infections and can't mount a strong response, so they end up having layers of illness. If your neurologist is getting faint of heart, you may want to look for either a Pandas doctor, a lyme literate doctor (LLMD), a DAN doctor or an integrative/osteopathic doctor. These seem to be more open minded to chronic infections and long term abx use. If you post what area of the country you're in, people may be able to offer suggestions. As for duration of abx, the most important thing is to protect the gut with lots of probiotics. In lyme treatment, abx are often rotated every few months to reduce the chances of bacterial resistance. I look forward to the day I can get my kids off of abx, but we aren't there yet. My son has been on abx of one type or another for 3 years. I'm not thrilled about it but the alternative is unthinkable right now. But it remains my goal.

You may want to ask this on the lyme forum. This is more up their alley. Personally, we don't see much when we do Epsom salt baths, other than the calming effect of a warm bath. But others do. Several lyme forum members have portable saunas that they love. We have used clay (you can get it in capsules - much easier) but hard to say if it helped. Again, some on the lyme forum feel it is helpful. We sometimes use activated charcoal during periods of bad herxing (for lyme) but haven't had those in many months, so not actively using it right now. It may help but again, so much is usually going on that it's hard to pinpoint what helps and what doesn't. It doesn't hurt. Our daily detox is milk thistle (for liver), resveratrol (antioxidant) and one capsule of pysillium husk (fiber).

Bill, FWIW - we used a bottle of the Mag-tab and it was well tolerated. But as the pill cabinet got more crowded with bottles, and the monthly supplement bill started looking like my winter heating bill, we switched to a regular 400 mg magnesium glycinate, cut in half (so each kid takes 200 mg/day). It seems to have a similar benefit at far less money. Magnesium+B6+zinc+D3 seem to help brain fog. If money were no object, I might have stayed with the mag-tab, tho the kids didn't like the pill size. But if costs become an issue, I think there are acceptable alternatives. Like Nancy, we give at bedtime with probiotics, 2+ hrs after abx.

Ok glutamate experts...this one's for you... I think I get why glutamate in our kids creates excessive excitement and oxidative damage. I get how Gaba and zinc can calm glutamate. But what about glutamine? I've read that glutamine can convert into either glutamate or gaba depending on what's needed. But it seems our kids' brains are already confused when it comes to proper regulation. Is anyone supplementing either glutamine or gaba with positive results? Can anyone expand my very limited understanding of glutamine?

Thanks for the additional info on timing. Good to know. I started reading Slagel's book last night (available for free from her website www.thewayup.com). Haven't gotten very far, but I think it's going to be exactly the kind of book I've been looking for - one that looks at how amino acids can add essential and missing elements into the system instead of relying on reuptake or MAO inhibitors to accomplish the same thing but less effectively. Given my kids' aversion to all food healthy, it feels promising. My daughter has now limited her intake to a PBJ sandwich for lunch and either mac & cheese, pasta with butter or cereal for dinner (refuses to eat breakfast). She will simply not eat if told she has to eat what we're eating. She is big on judging foods on appearance or texture. Not due to OCD. Just rejects food. Not a big leap to think she isn't getting essential nutrients. What scares me most is that while she has blood work indicating infections, she also has what feels like an underlying predisposition to emotional rollercoasters. My sister is bi-polar or depressed (she changes her diagnosis depending on whether she's in a high or low point). I have depression on both sides of my family, tho I've never struggles with it personally. So my fear is that my daughter, who has always been a sort-kinda-maybe Pandas or lyme kid, probably has a more basic predisposition that will remain after abx are stopped. Knowing how key the pyroluria dx was for my son, I'm on a similar quest to find the missing piece of info/treatment for my daughter. She's only 7 but my son has already said he can envision her trying to commit suicide as a teen. Talk about being motivated to find that needle in the haystack! This book and info is giving me hope we can avoid a crisis. Thanks so much for sharing this!

Just a quick update - decided to switch from inositol to tryptophan. It's been 4 days and so far, I'm liking what I see. I read that if you take at night, it will convert to melatonin but if you take during the day, it converts to seratonin. So DD7 is taking 170mg in the morning, along with Core which contains P-5-P. Last week, she refused to go upstairs alone. Now, she is going upstairs with very little issue - maybe a small pause before the first step. Morning dramas have faded into the background. Still a little sadness in the evening, but big improvement. Thanks everyone for your ideas and experiences!

What she says about glutathione (at least from a quick scan) is true. It is essential, it is ubiquitous in our bodies and it is poorly absorbed. It is widely used in the autism and lyme worlds. But it's generally regarded as a helpful supplement rather than a cure all (in large part because it is so poorly absorbed). My kids have taken alpha lipoic acid (a glutahione precursor), liposomal glutathione (believed to be slightly better absorbed), resveratrol (another antioxidant) and milk thistle (detoxes the liver). They have all helped to one degree or another. But this reads an awful lot like an infomercial. It would be wonderful if it were true, but ...

I don't have her labs in front of me. The IgM was high and I knew it was a recent/current infection - I knew when it all started back in Oct., and the high IgM just confirmed for us that we were dealing with EBV. So I didn't pay attention to the IgG. With your hsv issues, I'd seriously look into the lysine. We tried other things to no avail, but the lysine started to work within a few days. We did the MTHFR testing - DD has one mutation on C677, so we supplemented with methylfolate for a few months. We then tested her folate and B12 levels and they were high, so the methylfolate is in the back of the cabinet. No need to force another pill until she needs it. I didn't get any "aha" response but am glad we tested because it has long term health implications and it's good to know. But did not impact her current symptoms. (DS - the sicker one - has no mutations). I know MommaKath has seen big improvements with methylfolate. I totally hear you on the frustrations. Some days, banging your head against a wall would feel more rewarding. Do trust that gut and keep looking for that underlying missing piece. I'm still looking for my daughter's "source" of issues. But finding my son's pyroluria was a huge turning point. Once you find "it", it makes it all feel worthwhile.

If Dr T did your lyme test, was it only the standard WB? Or have you used a lab that looks at other bands and that lab is also negative? I respect Dr T but do not share his confidence in standard WBs. My DS always responded well the Pandas treatments (except IVIG) but we too could never obtain 100% or a remission greater than 2 months without backsliding. We treated for lyme and got a 4 month improvement - our longest, but again backslid. We then found pyroluria - a genetic zinc/B6 deficiency. Once we started supplementing for that, we saw immediate and lasting improvement. It's been dramatic. We enjoyed a record 5 1/2 month remission. Then DS got strep a few weeks ago and had a mild Pandas flair - like a 2-3 instead of a 10. And he pulled out of it quickly, not the 6-9 weeks it once took. So not cured, but I'll take this any day. If baseline eludes you and she can't get off abx yet can't fight the yeast despite the probiotics, keep digging. I'm not sure dr T will endorse pyroluria testing, but it's the best $70 test we ever did. Perhaps your homeopath might indulge you with signing off on the test? It was not our only issue, but it was the foundational issue that kept everything else from moving forward. It's similar to what fxcfer has found for her son. Not exactly the same deficiency, but a similar situation. Fix the root problem and other things get 100 times easier to address. Heavy metals such as mercury may also be worth exploring. You mention herpes in your heading but no details. If you have some herpes viruses going on, look into l-lysine. My DD had EBV that she could not shake. L-lysine made quick work of it (tho it does reduce seratonin, so an increase in anxiety is possible but for us, we only needed the l-lysine for 2 weeks and then were able to address the anxiety with tryptophan). Hope you find answers soon!

The IOCDF has produced two PSAs about Pandas - one for the general public and one for doctors. Please share! International OCD Foundation Warns Infections May Trigger Some Mental Illness Sudden Onset OCD Featured in Journal of Pediatrics & Therapeutics February 23, 2012; Boston, MA /PRNewswire/ — Today the International OCD Foundation (IOCDF), announced their support for children and families suffering from Sudden Onset Obsessive Compulsive Disorder. They are releasing two new PSAs created to bring awareness and engender change surrounding the disorder PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) and PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome). The PSA release coincides with publication this month of a consensus statement on diagnostic criteria for PANS in the journal Pediatrics & Therapeutics by National Institutes of Health researcher Dr. Sue Swedo and colleagues. PANS builds on the criteria characterized in PANDAS, but broadens the range of possible causes. With support from leading Harvard Medical School psychiatrist, Dr. Michael Jenike, countless parents, advocates and members of the medical community, the International OCD Foundation wants to make parents and physicians aware that infections can trigger mental illnesses like Obsessive Compulsive Disorder or OCD. PANDAS and PANS may be traceable to an infection such as strep. Usually, the body’s immune system makes antibodies to attack the infection but in PANDAS, those antibodies may mistakenly attack a part of the brain that controls emotions, behaviors and physical movements. The result is sudden severe onset of OCD-like behavior and/or other mental illnesses like eating disorders or tics. One of these new PSA’s features PANDAS advocate Susan Dailey, mother to a child diagnosed with the disorder. She now sits on the Board of Directors for the International OCD Foundation. Susan’s message is clear in this alarming and critically important PSA to parents everywhere: OCD affects between 500,000 to 1 million children in the Unites States alone, robbing children of an otherwise normal, joyful childhood. “I didn’t know that untreated childhood infections, like strep, could result in mental illness,” says Dailey. “Until, overnight, my beautiful little girl became tormented by Obsessive Compulsive Disorder, living in constant fear, unable to play with friends, or go to school. This is an amazing time right now – a chance to stop mental illness in it tracks. What other disorder offers that hope? We need more research now!” In addition to OCD, signs of PANDAS or PANS can include a child who suddenly behaves like a much younger child, or who suddenly cannot separate from a parent. Children may begin bedwetting again or develop daytime urinary urgency, tics, and/or a worsening of motor skills or handwriting. Parents often say, “This is not my child. She was not like this yesterday.” If a parent recognizes these symptoms developing seemingly overnight, along with a glaring change in their child’s personality and/or behavior, they should immediately have their child tested for Strep. If positive, any active infections should be immediately treated with antibiotics in order to counteract these symptoms. Dr. Michael Jenike, of the Harvard Medical School and Chair of the International OCD Foundation Scientific Advisory Board, is featured in a separate video message that targets fellow physicians. Unfortunately, due to a lack of awareness, many doctors around the country have not been aware of how to properly treat children exhibiting PANDAS symptoms. Dr. Jenike’s video message speaks to doctors nationwide, and urges them to learn more about the disorder and how to effectively treat it. “Often a course of antibiotics can eliminate the psychiatric symptoms and may save a child from lifelong mental illness,” says Jenike. To learn more about PANDAS and PANS, please visit the IOCDF’s website, www.ocfoundation.org. The Link: http://www.multivu.com/mnr/54781-ocd-foundation-pandas-psa-obsessive-compulsive-disorder

If you've been feeling lousy for a few days already, your DS has already been exposed. Doesn't mean you can't use it as an excuse, but... Strep went thru my son's school like wild fire recently. DS complained of not feeling right and then 3 days later woke up with swollen glands. Because he's on zith+rifampin and had a T&A, there wasn't much point in dragging him in for a swab. It's not like the pedi or minute clinic would add more abx if they knew what he was on (tho not telling them did cross my mind). But his throat wasn't that red, he wasn't complaining of a lot of pain, etc. So I at first thought it was a viral thing (did not know strep was rampant yet). Pandas symptoms started to flair and he came home from school early several days, complaining of muscle pain, brain fog. Then some mild OCD showed up. Homework became an ordeal. Then I got an email from his teacher telling me she'd been dx'd with strep. That's when I learned it had been going around school for weeks. So the LLMD added a month of amox as a precaution and I added resveratrol. The resveratrol seemed to take away some of the brain fog and pain. Treating the pyroluria for 5 months really seems to have helped his immune system. We did regular NSAID dosing for 2 weeks. The OCD is mostly gone (it was never much to begin with) and in only three weeks, he's about 90%. I was sad to be hammered over the head with the realization that he still has Pandas (it's easy to start to think it was always just lyme and that maybe Pandas was a mis-diagnosis). But it was good to realize that the 17 pills he takes daily actually helped keep him pretty stable. We went through a wobble, not an explosion. It was a 2-3 when previous flairs were 8's or 10's. So my point is that you should be vigilant but you can also be hopeful that by treating the lyme & co. and doing the integrative support, it's very possible that he can handle strep much better now. Fingers crossed for you.

My DD (48 lbs) has a long history of constipation and GI issues/GERD/dyspepsia. We went to a gastro doc, did an endoscope - found nothing. He shrugged and said "miralax and pepcid. See you in 6 months". DD then started seeing my son's LLMD, who's a doctor of osteopathy/integrative doc. He initially wanted her on Trufiber but getting that into her was a big effort. Long story, but we now use 200 mg magnesium (away from abx) and that has made her regular for the first time in her life. She also takes 1 capsule of pysllium husk at bedtime, which is like fiber in a capsule. We still have much work to do in terms of diet and hydration. But the magnesium and pysillium have been the easiest things to get into her and have done a good job of fixing the immediate symptoms. I know integrative docs aren't everyone's cup of tea, but for my family, it's been very helpful.

My son's worst rages were when he was on tindamax. A thought would pop into his head and he had to act on that thought immediately. For example, "Mom, let's get in the car and go buy me that Nintendo DS". "But you haven't saved enough money yet and it's 30 min before dinner and I'm not about to get in the car and get you a DS". "But we NEED to. We NEED to go NOW!" "No." "You are the WORST mother ever! I HATE you! Now get in the car and drive me to the store NOW!" 45 minutes of kicking, screaming...and then it was as if it had never happened. For us, yes, it was certainly a herx response. We eventually had to stop the tindamax. But it's happened with other abx as well, to a lesser degree. Omnicef kicked butt for awhile but we were able to slog thru it. If you decide to push thru for awhile longer, you can try to 1. give stuff to mop up toxins (many dying bacteria release toxins, not just lyme) and 2. reduce inflammation. For detox, we use milk thistle to cleanse the liver (the liver and kidneys are the major detox organs) and resveratrol, which helps with detox and inflammation. I am really liking both of these. We have also at times used bentonite clay or activated charcoal to mop up/bind garbage in the intestines and we use 200 mg/daily magnesium to keep BMs moving, to keep the junk moving out of the body. Lots of water helps clear the kidneys. Some people like lemon water. Another thought would be to pulse the augmentin for a few days - one day on, one day off, or reduce the dose - maybe half a pill - to see if you get relief. It's an alternative to stopping completely. I hope it passes quickly.

Ariel, I just posted this on another thread but after refreshing my memory, this might be a good one for you to read. It's very long, but full of info and ideas on what might be keeping that chronic strep around in your DS... http://bacteriality.com/2008/05/26/biofilm/ it should come as no surprise that the pathogens we harbor are seldom found as single entities. Although the pathogens that cause acute infection are generally free-floating bacteria – also referred to as planktonic bacteria – those chronic bacterial forms that stick around for decades long ago evolved ways to join together into communities. Why? Because by doing so, they are better able to combat the cells of our immune system bent upon destroying them. One treatment protocol against biofilms to antibiotic pulsing. You go off abx for three week, which allows the bacteria to emerge from the biofilms and move about freely. Then you go on abx for 3 weeks - ambushing the bacteria. Then off, then on. The first few pulses are rough, but bring really positive results. We may look at doing this in the coming months. The other tactic is to take something that weakens the biofilm, like NAC or nattokinase, and also take a combo of abx at the same time. So you whittle away the film and then have abx in your system to kill what gets released from the weakened film. In either protocol, detox is critical, because dying bacteria release toxins that can cause as much or more harm than the bacteria itself. If you want more info, you can PM me or post on the lyme forum. Members there probably have experience with both of these and not everyone on there comes to the Pandas forum. This is not to say your son has lyme. I'm only suggesting he may have strep or other bacteria or virus that's cloaked in a biofilm and this article may give you some ideas.

I've posted this before - it's a VERY long discussion on biofilms - not specific to one disease but on how it plays a role in many, many chronic health issues. There may be times you wade thru parts of this, but it is well worth the effort to read the whole thing. http://bacteriality.com/2008/05/26/biofilm/

I only watched once as well. But my impression was that he was lyme, misdiagnosed as autism. The docs then go on to generalize to many bacteria and the potential of abx, that the symptoms can be triggered by more than lyme.

No, still no answer on the urinary issue. But it remains despite a 5 month remission of other symptoms. We will be doing thyroid testing in a few weeks, just prior to our next dr appt. It could simply be something he needs to "outgrow" but doc agreed to do some testing to make sure we weren't blaming Pandas or lyme for what could be a separate issue. Not sure on your zinc question. Excessive zinc intake can cause nausea. But it depends on how much elemental zinc you took ,not sure if full or empty stomach plays a role, or time of day. Being that your heterozygous on C1298a, the B6 may be worthwhile even w/o zinc. You may also want to look into TMG/betaine (which I learned is different from Betaine HCL after buying a bottle of the betaine HCL ). PM me if you want to discuss more, or we can start another thread.

I know you've got to be beyond frustrated. You do everything right, you see the right docs, your kid is "textbook" - but he refuses to follow the dang script and get well the way he's supposed to. Know the feeling well. You've been around the forum through all the lyme discussions, so you have enough info on that to decide whether to pursue. You're probably thinking - he keeps getting strep, so no need to look at lyme. And that may be absolutely true. My only comment on the lyme or any other infection - if your DS keeps getting infections, maybe some other chronic infection is keeping his immune system too busy or overworked to fight off the secondary strep infections. So yes, you have obvious strep. But maybe consider testing or looking for symptoms of some other infection that's keeping the barn door open. Have you ever run a C3d, C3a or C4a immune complex panel? These might tell you if the immune complexes are busy fighting chronic infections. The second thought I had is in line with ThenMama but from a slightly different perspective. If you have tested IG subclasses or done other immune work that looks normal, you may want to look into other ways the immune system can be running at less than 100%. For my DS, it was pyroluria - a zinc/B6 deficiency where he takes in a decent amount of zinc/B6 but pees it out before it can be used. But it could also be some other nutritional deficiency that's keeping his immune system "under nourished". Like trying to fight a war without bullets. The tests that look at the guns say everything is working fine. But if your perfect gun doesn't have ammo, you still lose the battle. The final thought is to draw yourself a Venn diagram. The urinary issues that I always assumed was a Pandas symptom wasn't related to Pandas. Urinary issues can also be seen with lyme, with thyroid, diabetes, etc. Other Pandas symptoms overlap with other diseases. So it's possible that your son has Pandas PLUS something else and that something else has been masquerading and getting lumped in with Pandas stuff. Stop and reconsider the way you've always looked at his symptoms. Maybe other things will be worth considering. As for pex or IVIG, we've done them both. But if you have limited financial resources, IMO these aren't going to do the trick until you get to the underlying cause and address it. We use motrin every 6-8 hours for about 2 weeks at the peak of a flair. It helps a lot. But without the support of abx to fight an active/chronic infection, I'm not sure that all by itself it's going to be able to keep inflammation in check and limit the severity of a flair. If you decide to give this a trial, I'd also look into antioxidants - the things that help sweep up the mess caused by inflammation - the cell damage and death. We've had good experiences with milk thistle (also good for helping the liver which will be stressed from the motrin) and resveratrol (really like this stuff and it's available in liquid or pill).

Smarty - I meant that, in my understanding, CBT is really helpful for things like general anxiety disorder or anxiety other than OCD. But that OCD thoughts, which are generally driven by an irrational fear of harm to self or others and have a compulsion, is best disarmed with the specific techniques used in ERP. In ERP, you have tools like "do the opposite" or "change it up", meaning you take a compulsion, say touching 4 times, and stroke instead of touch, or touch 3 times, or touch, tap, touch, or delay - steps to interfere with the compulsion while not resisting it entirely. The tools deal not only with the fears but also with the compulsions. CBT, at least the way we use it, talks about catching yourself having a certain emotional/fearful response and using CBT techniques to change your thoughts/feelings/responses. But it doesn't assume there's a compulsion component or necessarily a fear of harm. I've always thought of ERP as a subset of CBT, used specifically for OCD, where CBT is more for GAD or non-OCD anxiety. Not sure if I'm saying it well, but that's what I was trying to get at.

Coleen - FYI - Igenex will give you a 15% discount of each test if you test more than one family member at the same time. You need to tell them so they flag it as such. Cigna reimbursed us about 60-70%? can't quite recall...