LNN

Here are 2 other writings in the same vein http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/308873/ http://books.google.com/books?id=F90i_FOSvbEC&printsec=frontcover#v=onepage&q&f=false

This was one of my DDs issues as well. Didn't wake up at night but during the day would wipe obsessively or need to change her underwear, insisting it was wet when it was dry. I think it was partly OCD, partly sensory. We were somewhat successful using ERP therapy, asking her to delay changing her underwear or distracting her for a bit before she gave in. We also put cornstarch in her underwear to absorb any feeling of moisture that happened just from natural sweat. This helped a lot. At times, like in the mornings before having to leave the house, we'd put a panty liner in her underwear (trimmed down to size). This was thin and unobtrusive but gave her that sense of security that "if" she leaked, it would be ok. (she of course never did because she wasn't really wetting. But it calmed her down and got us out the door). My DD never had strep either. Titers were always normal, she never swabbed or cultrued positive for strep. She may have had sinus or ear infections, or she may have had lyme - her tests were indeterminate. We use a blood test called C3d - which measures how activated her immune compliment is - it doesn't tell us what sort of infection she has, but it does tell us whether her behaviors correlate to some type of immune mardi gras. At her worst, her C3d was 93 (at the time, anything above 8 was considered high). The labs have raised the level of "normal" up to 20 now - not sure I believe that. But regardless, after treating her for 8 months for bartonella with 2 abx and keeping her on a pulsed prohpylactic dose of azithromycin (4 times/wk), her C3d is now below 20 for the first time in 3 years. We also treated her for a methylation problem that made huge improvements in her bipolar swings and irrational, PMS-y meltdowns. She's in a really, really good place now. So I don't know if chasing strep will bring relief or not. Motrin always helped calm my DD down. Long term abx helped lower the load on her immune system. But the behavioral piece didn't resolve until we addressed methylation.

I'm sure there are better sites, but here's one I have bookmarked: http://www.medicalinsider.com/bacterial.html#top Halfway down this table of contents, you'll see a section on probiotics. I think learning about gut bacteria is fascinating. But reading that a certain strain of probiotic is beneficial and finding that strain in a capsule I can buy have been two different things. Consuming fermented foods isn't going to happen in my house. So we've been limited in what we can find and mostly shoot for blends. As for the 2 hr window away from abx, we've been able to do it by giving abx at dinner and then probiotics at bedtime. That sends the probiotics into the stomach when the stomach is less active/lower acid and lets the probiotics sit in the intestines overnight, hopefully helping with digestion and having a few hours to do some good.

Lyme has been recognized as one of the bacteria that can provoke neurological issues due to chronic infection. In children, it's called PANS - pediatric acute-onset neuropsychiatric syndrome. In adults, it's just referred to as neuro-lyme. Ticks often infect you with not just lyme, but with other bacteria, including bartonella, which is usually suspected when a patient's neurological problems are more pronounced than his physical symptoms. The symptoms of lyme and co-infections is a long list. Fatigue, joint and muscle pain, brain fog, vision problems, tremors, motor/vocal tics, unexplained fever, partial facial paralysis (Bell's Palsy), sleep disturbances, rages, sensitivity to noise and light, not being able to get enough air (air hunger), and in neurolyme/Pans it can include OCD, anxiety, cognitive problems, motor control problems and other symptoms. I would read thru the following sites for symptoms: http://www.ilads.org/ http://calda.org/ http://ocfoundation.org/PANDAS/ and read the "helpful threads" that are pinned at the top of this forum. In general, both Lyme and PANS are treated with combinations of antibiotics, natural supplements and behavior therapy to get control of the OCD. When the infection starts to clear, you should see a reduction in OCD symptoms, if it's infection that's been causing the OCD.

I don't have the answer to whether her score is "high enough" but here's a link showing which abx work well on it http://www.ncbi.nlm.nih.gov/pubmed/20670687 and which have become less effective due to resistance. I know you have multiple things going on at the moment, but this would be one I'd follow up on. I'd also look into using a mucus thinner when you introduce an antibiotic - either N-Acetylcesteine (NAC) or Mucinex or a biofilm buster like nattokinase. That would allow better penetration. However, you'd want to get the gut in good shape first, and have a good detox plan in place. Not sure if you'd go after parasites first or this. I suspect parasites based on what I've read (a long time ago). But I'm not sure.

I think there is no "best" for everyone, just best for your child. Some have great results at a moderate dose (20-40 billion CFUs), some do well on 100+ CFUs. Some do well on probiotics with yeast/Sacc. Boullardi (e.g. florastor), some do poorly on Sacc B strains. You just have to do trial and error at a time when nothing else changes. You can also look into other things, such as odorless garlic capsules or grapefruit seed extract - in addition to probiotics - to keep yeast under control. We use garlic + 15-40 Billion CFUs probiotics (we rotate between 4 brands/kinds during the week) in order to keep costs down. Probiotics aren't cheap! I personally trust ones that are refrigerated over ones that require no refrigeration - no telling how many are still alive in a capsule that might've spent all summer in a hot warehouse.

I totally agree that there's more unknown than known about epigenetics right now. But I do think if you can identify a gene mutation and your symptoms correlate with the symptoms a genetic deficiency would cause, then it is very possible to work around that defect and alleviate the symptoms. Had I not pursued the MTHFR testing, my DD would be on bi-polar meds by now. It was getting severe. But this year, she sailed thru her worst season with barely a blip of mood issues, all because of a small amount of methylated vitamins. So I do think that for some kids, their answers lie here and tho we know only a fraction of what we'll know 20 years from know, science knew enough about this particular genetic mutation that I was able to find a successful alternative to psychotropic meds for my 8 yr old. I agree that worrying about genetic pre-dispositions for "old age" diseases is a waste of energy, I disagree that nothing can be done about it today. My DD and I have a much higher risk of heart disease, stroke and macular degeneration because of our MTHFR mutation and a long list of relatives who've suffered from these diseases. But by taking methylated B9 and B12, we might be greatly reducing our risks of developing these diseases. I do think there's a way from keeping a genetic light switch from being turned on by keeping the surrounding conditions "normal". In the same way people change their diet to reduce their risk of heart disease or cancer, I think you can do the same by treating your specific mutations with specific, individualized supplements. Could I be wrong? Entirely. Could I still develop the diseases that run in the family? Absolutely. But I will also do everything in my power to improve the odds that I dodge the bullet. I will also do everything I can to do the same for my kids. I can't control everything and there is so much unknown about epigenetics. But that's not going to stop me from doing what I can with the knowledge I can get today. For my DD, it's already changed her life in very dramatic ways. Of course people are free to disagree. That's what makes this forum so helpful.

My first reaction is that 300 Billion of just Culturelle is quite high. It's only one strain of probiotic if I recall. I think a lower dose of a blend might be a better option, especially if it's in one pill and reduces your DDs total pill load. I don't have any research to back this up. Sacc B is supposed to be "good" for everyone. It makes my DS ragey, impulsive and aggressive. Very similar to a yeast infection for him. I've tried it twice for extened periods and both times were awful. So one option is to stay away from Sacc B and see if, over time, supplementing with other strains changes the gut terrain. You say that he isn't treating the h pylori, but here's an article (only did a very brief search) that shows alinia can be helpful against h pylori. http://www.medpagetoday.com/MeetingCoverage/ACG/16633 Your post suggests that you started previcid, amox, then a switch to zith, and GF all within a short time. If I'm reading this correctly, then its hard to say what's what. Also, when you ate out, did you stay GF at the restaurant? I too am confused about why you re-started antibiotics. If you're going to start alinia, I'd go back to what you were doing at baseline for a few days and then start it. Then you'd have a better way to gauge just the effects of the alinia. In whatever order you decide to add things, it's helpful to wait at least a week in between changes and only change one thing at a time. I know how tempting it is to throw everything at it. I hope you're able to see positive results soon!

Nancy - good luck. I know how OCD has been that one nut you can't seem to crack. Hoping this is the year! Jill - keep us posted - fingers crossed!

an ophthalmologist is a medical doctor who can do surgery. An optometrist is not an MD and generally focuses on optics and vision correction. The word pediatric just means they specialize in treating children. The kind of doctor who tests for CI and treats with vision therapy is a Behavioral Optometrist. In your other thread, I posted a link where you can find a Behavioral Optometrist in your area. It will be highly unlikely you will bet tested for CI from the pediatric ophthalmologist you've made an appt with, but you can always call the office and ask if they test for CI and treat it with vision therapy.

This is good to know. Is it obvious that you have to click? Waiting for results and wondering how complicated it's going to be to interpret data...

Nancy/JAG, what are you guys trying to treat with the amantadine? Just curious

I thought the Cunningham test measured dopamine receptor antibodies, not dopamine levels?

T think you'd be safe with Yasko's test - it seems to "only" test genes along the methylation pathway. 23andMe tests over 900 SNPs (some one the same gene). This is one comparison - but only comparing methylation pathway genes... http://www.mthfrsupport.com/articles.html I found this site yesterday that lists SNPs by disease category - everything with an "A" in the right column is tested by 23andMe http://www.eupedia.com/genetics/psychological_dna_test.shtml I can't find anything on idleitis - didn't show up on snpedia.com either. Do you know what the letter abbreviation or the alphanumeric code for the gene(s)? You could probably call 23andMe and ask, or perhaps the people at facebook's MTHFRSupport page?

I was told by one of the Pandas specialists that my son did not have Lyme. Our LLMD (in central CT) looked at the same labs and immediately diagnosed lyme. My son has gotten far better with Lyme treatment (Pandas treatment alone never got us lasting results). I mean no disrespect and I know Dr T has helped many. But he does not know lyme and IMO, should know better than to rely on a standard western blot. He has butted heads with many naysayers who insist that without elevated titers, you can't have Pandas. So why he continues to rely on something like a standard WB baffles me. Go with your gut.

There are three issues with CI - one is focal point - the ability of both eyes to converge on the same point (eye teaming). The second is tracking - the ability of the eye muscles to keep the eye on the same point and not jump around when the muscles get tired (this is what causes the eye to lose its place and jump from line to line on the page) and the third is focus - the ability of each eye to see clearly and sharply. Your son can tell you that things aren't blurry, but that's only one of three aspects. And things can be sharp at one distance but blurry at another, or may get blurry as the eyes get tired. So it's really best to have a screening. Unfortunately, you aren't going to find an unbiased diagnosis. There seems to be agreement that CI exists. There is disagreement about what to do about it. Regular optometrists and ophthalmologists say that vision therapy doesn't help and that it is over-diagnosed. That those who treat it are snake oil salesmen. Behavioral optometrists believe it should absolutely be treated and that vision therapy is absolutely helpful. So your diagnosis is going to be heavily influenced by who you see for an evaluation. In my own experience, the pediatrician said DD had it. The regular optometrist ignored it and gave her regular glasses. DD said they didn't help. Behavioral optometrist said she had it, gave her different glasses and therapy. DD now wears her glasses all the time, says they really help and her coordination and reading is stronger since she started doing therapy. So my personal experience believes the behavioral optometrist. Enough that I'm now willing to fork out additional money for the second kid, as painful as that will be. Many of the research papers I found were inconclusive and seemed to depend on which camp did the study. I did find one study that seemed relatively unbiased and did find that glasses plus 12 weeks of vision therapy both in the office and at home seemed to help about 75% of the kids n the study. It's also possible that your son is genuinely bored with the subject matters and/or has some ADD. Not everything is medical. Lots of 11 yr old boys find school to be boring and it usually isn't structured for the way they like to learn. But it sounds like you're seeing real vision/reading problems. And that's going to get in the way of academics even if the subject matter is interesting. When we started down this road, the behavioral optometrist did a 1 hour preliminary screening. From that, we got a diagnosis and a prescription for bifocals. That exam was $200. You could always go that far, get the new glasses and see what improvements came from that alone. We opted to take the second step, which was a 2hr evaluation and a battery of tests that measured all sorts of vision/perception issues. Was the child able to predict the next pattern in a series of patterns, did the brain see correctly, where the problems in all three areas of vision (eye teaming, tracking and focus) or just in one or two areas? From there, we got a lengthy write-up that we gave to the school and that gave my kids 504s with accommodations for school. Most importantly was that they get extra time for tests like the state standardized tests. Things have improved. You'll have to read up on it and go with your gut. At the least, based on your description, I'd consider an initial exam and new prescription for glasses. You can find behavioral optometrists here: http://www.covd.org/ChoosingaDoctor/tabid/84/Default.aspx If you don't have luck, there are other organizations that have similar sites. I just don't have them bookmarked.

Ditto Rowingmom - we used to use binders like clay or charcoal but now just rely on making sure we have daily bowel movements. You need to keep the waste moving out of the body. Two things that help are a magnesium supplement and psyillium husk capsules. We use 200mg magnesium every other day. But the best dose is the one that gives you a daily BM that's normal consistency. Too much will give you a loose stool and not enough won't give you a daily movement. So play with dose with that goal. The psyillium husk is something doctors recommend for middle aged and older folks for "regularity". It basically acts like a little sponge, drawing water into the bowels, keeping things moving and providing "fiber" to keep the colon clean. The other things you can use fall into two categories - antioxidants that help your body's cellular garbage men clean up toxins and anti-inflammatories that help with behaviors. Antioxidants include: alpha lipoic acid (we use 600mg/day) resveratrol, vitamin B6 in the form of P-5-P, vitamin C and E, milk thistle (aka silymarin) - which carries some risk of allergy if you're allergic to ragweed but my DD and I both take it without issue despite having a ragweed allergy. Anti-inflammatories - we give motrin 2-3 times/day especially when impulsive behaviors cause problems, enhansa (which is tumeric) Also, make sure you're using a probiotic. Taking antibiotics without also taking probiotics (at least two hours away from when you take the antibiotic) can lead to yeast problems and yeast can cause horrible silliness, impulsiveness, mood swings, anger and brain fog. The best is to use a probiotic that has a blend of strains instead of just one and my personal bias is to use the ones that are refrigerated at the health food store, not on a regular shelf in a grocery store. We shoot for 30-40 billion CFUs/day. Some people use much higher. Some people like Florastar or Sacc. Boullardis - which is a "good" strain of yeast that doesn't get killed by antibiotics. Not everyone can tolerate this kind tho. My son cannot - gets angry and foggy and aggressive. So we've settled on Theralac, Truflora and Ultimate Flora. I'd check with your local health food store to see what's available. The other anti-yeast supplement we use is one odorless garlic pill every day. This plus probiotics has helped us stay free of yeast infections for a year, despite multiple antibiotics for Lyme. Regarding motrin, one thing I found helpful was to get a doctor's note that allowed my son to go to the nurse every day after lunch for a dose of motrin from the school nurse. I'd give him a dose in the morning, then 6 hrs later, he'd go to the nurse's office, then he'd get a third dose at bedtime. We'd do this for about 2 weeks during a bad flare and it kept the ugliest behaviors from rearing their heads.

My son is also in 5th grade and has been diagnosed with Convergence Insufficiency. His symptoms are very similar to your son's. His vision is 20/20 but his eyes don't work as a team with his brain. Here's a great explanation of it http://www.childrensvision.com/reading.htm My daughter also has this and was first diagnosed by her pediatrician when she was 4 (hooked up wires to her head and had her watch videos/images). They referred us to a regular optometrist who ignored the diagnosis and gave her glasses for far sightedness. For three years, she always said the glasses didn't help much. Last fall, we took her to a behavioral optometrist who confirmed the original diagnosis of CI and prescribed different glasses - bifocals that correct for both farsightedness and lower lenses that bend the light in a way that corrects for CI. She now wears her glasses all the time and says they help a lot. From what I've read and from my own experience, regular optometrists pooh-pooh CI and won't test for it. Behavioral optometrists are the ones to see. However, the vision therapy they recommend is ridiculously expensive and only a small portion is reimbursed from insurance (medical not vision). The doctor recommended we do 24 sessions for each kid. We can't afford to treat both kids at the same time. So we got them both glasses but opted to treat my daughter first (we have spent tons on the Pandas/lyme son, so it was her turn to get first dibs on the funds). We've done 9 sessions for her and it has definitely helped. She still has some work to do, but I can see a significant improvement. Enough that after 12 weeks, we'll switch and do 12 weeks for my son. Then we'll reassess and see what sort of change we can find under the couch cushions to decide if we can afford any additional sessions. I can tell you that my son - even without the therapy but just the corrective glasses, has put aside Diary of a Wimpy Kid and is now reading a series (Ranger's Apprentice) that is considered a 6.6 grade reading level by scholastic books. AND he's reading it at a faster rate than his class mates, blowing through a book every 7-10 days (there are 11 books in the series, he is now a full book ahead of a friend who started the series ahead of him). I learned about CI from a friend whose son has an eye tic. They explored Pandas, Lyme, mold - but what has helped the most has been the bifocals for CI. His academics were borderline - they debated about holding him back a year. He's now firmly at grade level. What I find really interesting is that convergence insufficiency effects the basal ganglia - the same part of the brain effected by pandas. So for some like Stillhopeful, it could be a medically induced situation. But for my kids (one Pandas, one not), it's something that's responded to vision therapy and glasses. I wish it were more affordable and that insurance covered more of it but we've spent far more on other medical interventions that didn't yield nearly as significant improvements.

Have to confess I haven't paid too much attention on the sulpha/sulphur/sulfite stuff like I should. I've been avoiding that aspect. The rest of the methylation stuff has had all my attention. But I suppose I should go figure it out...Thanks for the reminder...

Curious why you're giving a very high dose of D (hopefully D3 and not D2) but only once a week? You might see better results if you did 10,000 IUs daily. Also, vitamin K helps with D3 absorption. My son had Pex and then IVIG 10 months later. Pex helped for a time but then he slid. Like your son, he had a chronic infection (my son had undiagnosed lyme) and IVIG was a negative experience - it likely triggered a severe herxheimer response that took months to recover from. Others have found IVIG to be helpful even with an ongoing infection. I think some of the answer depends on your financial/insurance situation. With an active myco infection (and have you tested for lyme?), one IVIG probably won't be the end of your story. If the cost is going to be out of pocket, there are other ways to consider. If it were me, I'd get those D3 levels up and get those Myco levels down before doing IVIG or you may not see the improvement you'd hope for. If you do proceed with IVIG, make sure you have a post-IVIG plan to manage inflammation and herxing. To boost a weak immune system with HD IVIG could seriously stir the pot for awhile.

My first thought is that there may be strep in the picture, but it doesn't sound like the lyme was properly treated either. Until you eradicate all infections - strep, lyme and whatever else, you're not going to get remission. Lyme can raise CaMK II in the Cunningham test as well. You can email her to confirm this. It is not a test that isolates the effect of a strep autoimmune response. Come of the outer proteins (M proteins) on lyme bacteria and strep bacteria are very similar. So if you need to travel, it's worth seeing someone who understands both infections. Usually, Lyme needs to be treated with a combo of antibiotics taken simultaneously. My second thought is that my daughter can display bipolar symptoms that have been taken care of by addressing her methylation issues. Methylation is a complicated topic and the first thing you need to do is address infections. But put the word on a sticky note and come back to it when you're further along, because it can make the difference between reaching an 80% recovery and getting to 100% (in my opinion). There are some members here from Texas who struggle with lyme and hopefully they can offer some doctor suggestions. Most likely, you're going to have to travel but make sure that doctor understands both infections.

We saw nice improvement with Cefdnir (omnicef) in combo with zith - but that was for lyme. (FWIW, zith + augmentin did nothing for my DS). I believe Dr T continues to rely on standard western blots for lyme testing, which is very frustrating. The standard lyme WB is not reliable (you can go to helpful threads on the lyme forum to read about various tests). If he's not willing to test using Igenx, then ask for C3a and C4a labs from LabCorp. These can be markers for chronic lyme and chronic mold. Some of us have found that when 100% remains elusive, there's an undiagnosed condition along with the Pandas - lyme, mold, methylation problems, zinc deficiency... So keep pushing for answers. The fact the cefdinir is making a dent suggests there's another bacteria lurking or that some sort of chronic strep is there (have you done a T&A? sinus MRI?) As for IVIG, including the NIH study, focuses on whether IVIG helps to end a flare. It does not view IVIG as a "cure". If things are in remission, then I don't think IVIG would be helpful. However, it sounds like you haven't had remission and have just become accustomed to a new normal. If that's the case, then IVIG might help. But only if you find the hiding infection first. I would make sure you've really tested for lyme before ruling it out, not just rely in a standard western blot. That cost us a year and put my son thru unnecessary h***. You may not have lyme. But make sure before you waste a lot of time treating the wrong thing.

DD had shots for 18 mos w/o incident. She's C677T hetero. I don't think shots effect this part of the methylation cycle. FWIW, The shots helped a lot but we stopped shots b/c she developed needle phobia that got worse as time went on, not better. Unfortunately, allergies got worse again. So we just started sublingual drops. I thought these were only available for food allergies but no. These are for environmentals (weeds, grasses, mold, plus cat). One drop under the tongue 3x/day. Just started 3 days ago. Biggest challenge will be remembering to give 3x/day... But now that you have me thinking about it, I'll go ask on MTHFR Support just to see what they have to say...

Yeah- bummed that 23andMe doesn't check SUOX. Hoping we can skip it, as DD can take bactrim and other sulfur without issue. Sounds like you have a good practitioner - they;re hard to find! Hope - when did you check the homocysteine? We checked back when I was overdosing DD on methylfolate (without also giving B12) and it was low. But in hindsight, that makes sense - I was putting in too many methyl donors and it was recycling too much in the methylation cycle, not leaving enough to produce homocysteine and therefore not enough glutathione. So in her case, too much methylfolate = not enough homocysteine. But haven't tested it since we settled into our current dose. If this isn't your case, you may want to post the question on the "MTHFR Support" facebook page. Those guys know way more than I ever could about this stuff.

Agreed. You can't stop an SSRI cold turkey. If it were me, I'd give the Luvox tonight and call the prescribing doctor. Then work with him/her on a weaning protocol.