LNN

Philly, I haven't followed this thread - must've made my ears ring when you used my name in your morning post. So I apologize for jumping into a topic I haven't taken the time to read. But your mention of cognitive issues, and how they don't fit into Pandas - plus your mentioning all that time sitting on patio for many many months...both hit home. I have done both. You could excavate old posts from '10 and find me in knots because my DS had cognitive issues no one else seemed to have (except for JAG, who threw me a private lifeline on this issue ). I'm not here to make you believe in co-morbid. I can only tell you that for my DS, it's turning out to be layers. In hindsight, we've found that he had a zinc/B6 deficiency - either genetic, via poor diet, chronic illness - or who knows. That set him up for struggles with infections. Then undiagnosed lyme. Then strep/Pandas. Over 3+ years, we've unraveled many knots. We did many aggressive treatments. No need for gory details. Lots of symptoms responded. His cognition remained hindered. I told myself, others told me - "well, it takes time for the brain to heal." Time didn't heal. What did the trick for him was treating the nutritional deficiencies he had. - notably the zinc/B6 pyroluria. When we started treating that last August, it was a "holy sh**" moment. Within a week, it was like watering a parched plant. He changed. He grew - physically and mentally. Within months, he blossomed. He caught up. For the first time ever - EVER - his teachers couldn't tell he was different. $35,000 in medical bills and 3 years and then... 4 silly pills, for $1.20/day, brought back the son I used to know as a toddler. Yes, we still do more than just this. There may be one last lyme battle ahead, he caught strep a month ago and had a mild flair. But it's an entirely different game now. He doesn't fit into one box. He's not neatly Pandas nor neatly lyme. I can't tell people our story because it takes too friggin long and sounds just too nutty. But...he's better. This weekend, family saw him for the first time since last July. All they could say was "Who IS this kid???!!" My answers won't be your answers. But yes, I was 100% sure of a lot of things that turned out to be...not wrong, but incomplete. It's a journey. A very humbling journey. Hang in there.

I would certainly follow your doctor's advice, but just an FYI, when we did tapers, both of our Pandas docs had us give the whole dose in the morning, with food. We were told that because pred can cause you to feel a little wired (especially as it starts to bring down inflammation and you start to be "normal" again), it's better tolerated in the morning so you're not buzzing and bouncing off the walls at night when you're tired yet wound up. We never had stomach upset. But if you do want to give an OTC stomach aid a try, my DD used generic pepcid 20mg when she was 40 lbs. for GERD. Because her issues were worst in the morning, the GI doc had us give it at bedtime so that it was already in her system when she woke up. You could try either 10 or 20mg at bedtime and maybe give the pred with breakfast.

I'm not sure that this is OCD. As I understand OCD, there is an anxiety/fear that something overwhelmingly bad may happen (obsessive anxiety) and a superstitious-like ritual (compulsion) that, if completed successfully, will prevent the bad thing from happening. A slight exception is "just right" OCD where there's an overwhelming discomfort (say, with unevenness) and the only way to relieve the anxiety/stress caused by the obsession (evenness) is to touch or do something to make the thing even. What you describe doesn't seem to have the preceding/motivating fear. It seems to be driven more by either an extreme sound sensitivity or an intense need to control. I'm no expert. Could be OCD. But it doesn't strike me that way. The thing it most reminds me of is a friend's husband who was diagnosed with babesia. Prior to treatment, he could not be in a room with lights on, could not drive in a car with other people because the sound of someone else breathing in a confined space of a car drove him nuts. Can your son articulate what it is about your eating that bugs him? Is it a fear or an aversion? If you do decide it's a fear/OCD...one approach would be to do baby step exposures. You can have him watch you sip a few sips of a drink through a straw. Or take one bite of something (that didn't require a lot of chewing). Then build up from there. At each step, reward/celebrate. But it's more than just building up. You'd also need to identify and confront the fear that drives the compulsion. If he's afraid you'll choke, you need to create a plan to confront that fear, not simply watch you chew one bite and then two. DCMom may have some good ideas on this if it is indeed a fear-driven OCD behavior. My personal experiences have more to do with CBT for anxiety. OCD has thankfully not been a steady squatter in my house.

My understanding is that it takes 3-4 weeks before you'd see antibodies in any test. I'd do the ceftin for at least 30 days. Omnicef is another good one, as it crosses the BBB (ceftin may too - I just know for certain that omnicef does). Not sure on the dose - it should be "treatment" dose for his weight. You can check the mfr's website for dosing.

Kirkman has several good ones. I also like Source naturals Life Force. Both are pricey. So currently, I'm using Full Circle http://www.fullcirclefoods.com/Products/VitaminMineralSupplements.aspx which is carried by my grocery store and alternate between this and Source Naturals every other day. The Source Naturals uses forms of ingredients that are more bioavailable (e.g. methylcobalmin compared to cynocobalmin for B12, P5P form of B6). Great stuff but does look a little funny and has a mild aftertaste. Need a few swigs of OJ to get rid of it. My DS takes an adult multi. Many children's multis aren't different in dosing compared to adult multis. The difference is often only that children's are chewable. Stops being an issue once they can swallow pills.

We've used oral glutathione. DS felt it helped some, but it was pricey and I could only find research that said it was poorly absorbed. So as we added supplements and the monthly budget grew larger, we stopped. Some over on the lyme forum have used IV glutathione and some have experience with a glutathione cream.

Kim, Thanks for this! I too got very frustrated when trying to figure out what was in an allergy serum, and when all the talk turned to preservatives and adjuvants, I got worried that allergy serums must have some sort of similar stuff. But could never find much one way or the other. Your explanation of how the goal of shots is the opposite of a vaccination made total sense. Now, if anyone ever gets wind of a sublingual treatment for seasonal allergies - now that would be awesome! (the only ones I've ever seen are for food allergies).

I'm sorry you're in the situation. It sounds like one of your major problems is a lack of medical support, which makes everything 5 times harder. I do think you should have your second son checked. My DS finger-sniffed during episodes and if he doesn't know why he's doing it - he just has to - sounds like a compulsion. If he isn't already on a regimen like your first son, I'd start getting him to take the same things to try to reduce inflammation. IVIG absolutely helps OCD symptoms. Your doctors are mistaken. The NIMH study is specifically focused on its benefits for OCD. I know others are more closely involved, so hopefully they'll be able to give you some research papers. No doctor is going to listen to a bunch of anecdotes from a US forum. You may want to start a second topic specifically asking for recent research papers, not just on IVIG but on the immune modulating effects of abx. This is now an emerging theory as to why our kids may need long term abx - not simply to fight infection but also to modulate their immune systems/inflammatory response. You can also google ALS (Lou Gehrig's Disease) + antibiotics, as this is also being researched in ALS. New thinking is that abx do more than just fight infection. As for your supplements...you may want to see if you can test for pyroluria - a genetic inability to make efficient use of the zinc and B6 in your body. If your sons have it, it could be contributing to the inability to shake an infection and higher than normal doses of zinc/P5P (specific form of B6) and choline might help. Also, if you have pyroluria, you generally only use Omega 6 and not Omega 3s, as they compete for the same binding sites and pyroluriacs respond best to Omega 6s. Lysine is a great anti-viral. But it is also a seratonin-agonist and can cause anxiety (and I'm guessing could also contribute to OCD). It could be wiping out the benefits of the St John's Wart. You may want to talk to your homeopath about eliminating this one for daily use and only using it if a cold crops up. It is effective against certain families of viruses but not all. So as a prophylactic, given your son's anxiety/OCD tendencies, I'd reconsider this one for daily use. If you're considering adding inositol, GABA or 5HTP, do some research on using it with St John's. You don't want to be using too many things that effect seratonin at the same time. I posted a bunch of links to inositol articles a few weeks ago. But I don't think it's something you should combine with other anti-anxiety supplements. You may also want to look into supplements for oxidative stress - resveratrol, alpha lipoic acid, CoQ10, others?. Plus using ibuprofen as part of a regular anti-inflammatory regimen. As for ASO/antiDNase levels dropping - my understanding is that no one knows how fast they drop. So sounds like a smokescreen to me. I "think" ASO drops fairly quickly, at least compared to AntiDNase. But I certainly think checking them every 3-6 months is a valid tracking tool. It will show you drops and spikes and give you some evidence that something could be going on. You can also ask about measuring C3d immune complexes, which show whether the immune complex system is overly activated (presumably fighting an infection). You may also want to look for Ozimum - she's in Australia and comes to this forum periodically. You can do a member search and send her a private message.

Timely post! My DS, also in 4th, starts our state's mastery tests this coming Tue. Being neurotic, I've stressed over these for the past two years under the reasoning that these scores will "haunt" him for the coming year. Each year, he was doing well in Dec/Jan and tanked in Feb just before the tests - and my heart breaks because he doesn't get the chance to show what he's capable of (even with accommodations like separate room and untimed environment). The worst was last year, when in addition to the state exams, they also administer a type of IQ test. I knew he did poorly and I've really struggled with trying to let go of my own hang ups about this. It is, over time, leading to his being placed with groups of kids he doesn't feel he belongs with. But...this is my thing to get over, not his. The fact the his teacher (who's new to the district) is incredibly stressed over how her students are going to perform tells me it's really her report card, not my son's. But we all place value on test scores. No matter how much we tell ourselves they don't matter. Really tough decision. As for your particular situation...I think I'd move forward with the medical plan and do what's best for her health. Maybe treat this year's testing like the first pancake - something you'll toss aside. The scores reflect on the school more than they reflect on her. The school will end up using their own assessment tests for determining your DDs placements. And like Nancy said, you then have to advocate at the teacher level, get them to see beyond scores and see the kid. Do the right thing for her body and try to let the school worry about the test. The only caveat is that I'd follow an abx schedule that was easiest on DD so she can make it thru the testing weeks with the least amount of distress. So if she's starting to herx and it happens to be time to up the dose, maybe stretch it out. If at day 14, she's struggling, maybe don't up the dose just because "it's time" according to the calendar. Maybe up the dose instead at day 18 when things have stabilized or after the testing is over. Or maybe keep her dose the same until day 23. Step up based on her body's response instead of the calendar. If it takes 8 weeks to get up to 1000mg instead of 4 weeks, but it spares you both from a major herx, so be it, IMO. (Now I need to follow my own advice - I'll let you know how that goes!)

It's only a suspicion on my part. I don't know what's in the stuff. If you find out they're generally "safe" please let me know - it will remove some guilt.

I can't give you a comprehensive answer - there are a lot of things we never looked into, like food allergies. But there's one thing I'm incredibly glad we tested for and that was pyroluria - a zinc/B6 deficiency that can only be detected thru a urine test. A few members have found this issue and treating made a significant difference for my son (less so for my daughter). I can send you background info and test info if you're interested. As for metals - lots of debate on how reliable the tests are. Heavy metals generally do no stay in the blood for more than a few hours/days after exposure. So blood tests won't reveal long term issues. The metals then settle into soft tissue - liver and brain are favorite spots. Because the liver is the hepa filter of the body, lots of toxic stuff builds up there. If you have infection or methylation issues that reduce your ability to detox, even more toxins build up. The other organ that does a lot of detox is the kidneys, which is why urine tests are often used for metals testing (tho my understanding is that more is generally excreted thru the bowels). There are two thoughts on urine tests. One says test a regular urine sample for baseline and then administer a metals chelator, like DMSA or EDTA or DMPS - and then collect another sample. If the chelating agent has provoked metals to come out of the soft tissue, you know you have a metals problem. The second school of thought is, save the money, skip the baseline test and just do a provocation test. If metals are there, it's the second, chelated sample that will show it. This school says any levels are bad, so who cares what baseline was. If metals show up in the chelated sample, they're there and need to be dealt with. The third method is hair testing. Our doc uses urine testing so I didn't look into the pros and cons of hair testing. S&S might be able to chime in. Metals freaked me out in a big way. But slowly it started to make sense and it became less frightening. We've only done a few doses of a chelator very infrequently. Other things have some up or DS was in a really good place and I didn't want/need to rock the boat. Plus treating pyroluria with zinc "naturally" helps chelate some metals by improving methylation. So we've taken that route instead. But I have web links and info on it if you go there. I know your daughter is really struggling. My heart breaks for you both. When we hit wall after wall, I eventually found myself looking at the basics - things like methylation and nutrition, orthomolecular supplements of magnesium, zinc, B vitamins, and oxidative stress (reveratrol, milk thistle, alpha lipoic acid). No simple or easy answers. But if you want links on any of this stuff, let me know and I'll pass along whatever I have.

Does it have to be exclusively Sacc B? We use rotate between Theralac (30 Billion in one pill) http://www.theralac.com/why-is-theralac-the-best.aspx and Truflora (15 billion) http://www.truflora.com/default.aspx - both of which are pricey, plus one or two Sacc B from Jarrow (5 Billion). When you consider all the other pills our kids take, Jeez..it's been really helpful to be able to give one or two and be done for the day.

Thanks for all the links - I have some reading ahead of me. I'm a little familiar with BH4 from Yasko's videos - great find on the autismOne link - looks like this is the same presentation on Yasko's DVD, in which case I highly recommend it to everyone reading this thread. Not everything Yasko says is validated/peer reviewed through research but she has some tantalizing theories and I think some have been good things for my kids. I assume from the Shaw paper that aluminum is also in allergy shots, since the goal is to provoke an immune response. I also assume something nasty is in the serums as a preservative - if not themirosal, then an equally suspect additive. It was only after my DD had rec'd 18 months of shots that I became aware of what I might be putting into her body and we stopped the shots this winter. There has got to be a better way to control histamine than injecting her with an adjuvant that has "pervasive uncertainty" around it's safety. Does anyone know what adjuvant or preservative is used in allergy shots? Not that I can do anything about it now, but curious. I've considered TMG/betaine for her digestive issues but haven't pursued. Anyone have experiences to share?

I don't have any experience with D2, only D3. I know D is synergistic with other minerals/vitamins...(magnesium, zinc, B6, C? others?) could it be that these are also low and supplementing only one of them is causing an imbalance? Could it be that D is strengthening the immune system and allowing it to fight something? I don't have any answers. But it does seem like a clue worth pursuing. Can you test for other deficiencies?

DS9 (75 lbs) is on 1000 mg - 500 in am, 500 in pm.

I was looking for info on orthomolecular web sites and found this: http://orthomed.org/index.html Orthomolecular medicine, as conceptualized by double-Nobel laureate Linus Pauling, aims to restore the optimum environment of the body by correcting imbalances or deficiencies based on individual biochemistry, using substances natural to the body such as vitamins, minerals, amino acids, trace elements and fatty acids. The term "orthomolecular" was first used by Linus Pauling in a paper he wrote in the journal Science in 1968. The key idea in orthomolecular medicine is that genetic factors affect not only the physical characteristics of individuals, but also to their biochemical milieu. Biochemical pathways of the body have significant genetic variability and diseases such as atherosclerosis, cancer, schizophrenia or depression are associated with specific biochemical abnormalities which are causal or contributing factors of the illness. The rest of the site explores this topic. Also on the site: http://orthomed.org/isf/isf.html The International Schizophrenia Foundation It is a national, non-profit, charitable organization federally chartered in 1968, with international affiliates dedicated to raising the levels of diagnosis, treatment and prevention of the schizophrenias and allied disorders. How Does it Carry Out its Functions? The ISF has developed programs which include professional and public information, working with mental health care professionals and governments, and research. The ISF information program includes: A list of publications including more than 300 books, pamphlets and reprints. Publishing The Journal of Orthomolecular Medicine, formerly known as The Journal of Orthomolecular Psychiatry, a unique medical journal for health professionals. Publishing Nutrition & Mental Health, a newsletter with special emphasis on psychiatric illnesses. Annual international conferences held alternately in Toronto and Vancouver, focusing on nutritional medicine. In addition, public meetings, conferences, radio, television programs and newspaper articles are also part of the program. The ISF and its branches answer thousands of enquiries each year from people seeking information and help. The ISF works with governments, physicians, nurses, teachers, psychologists and community organizations to improve treatment and preventive measures, to reduce fear and stigma, and to provide the best possible treatment and rehabilitation services. The ISF also promotes and supports research. And another tab that has a list of books and article reprints and DVDs for sale. Some of which look interesting. Might be worth checking out. One that note - does anyone know of an online magazine or website that focuses on orthomolecular or natural treatments for chronic illnesses, neuropsych issues, general health, kids - or any of the zillion issues we parents face? Or any behavioral magazines, like Additudes http://www.additudemag.com/ but with a more holistic view?

I don't want to hijack Denise's thread. But Ellen, I posted an article about toxoplasma you should read. You're in my thoughts...

This is a long but fascinating article in this month's Atlantic Magazine about toxoplasmosis. I haven't done much research, but a friend has told me there's also a growing body of research on toxoplasmosis and anorexia. http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/8873/ Certainly Flegr’s thinking is jarringly unconventional. Starting in the early 1990s, he began to suspect that a single-celled parasite in the protozoan family was subtly manipulating his personality, causing him to behave in strange, often self-destructive ways. And if it was messing with his mind, he reasoned, it was probably doing the same to others. The parasite, which is excreted by cats in their feces, is called Toxoplasma gondii (T. gondii or Toxo for short) and is the microbe that causes toxoplasmosis—the reason pregnant women are told to avoid cats’ litter boxes. Since the 1920s, doctors have recognized that a woman who becomes infected during pregnancy can transmit the disease to the fetus, in some cases resulting in severe brain damage or death. T. gondii is also a major threat to people with weakened immunity: in the early days of the AIDS epidemic, before good antiretroviral drugs were developed, it was to blame for the dementia that afflicted many patients at the disease’s end stage. Healthy children and adults, however, usually experience nothing worse than brief flu-like symptoms before quickly fighting off the protozoan, which thereafter lies dormant inside brain cells—or at least that’s the standard medical wisdom. But if Flegr is right, the “latent” parasite may be quietly tweaking the connections between our neurons, changing our response to frightening situations, our trust in others, how outgoing we are, and even our preference for certain scents. And that’s not all. He also believes that the organism contributes to car crashes, suicides, and mental disorders such as schizophrenia. When you add up all the different ways it can harm us, says Flegr, “Toxoplasma might even kill as many people as malaria, or at least a million people a year.” (the entire article is quite long but well worth reading - you will find similar stories about how other bacterial, parasitic and viral infections can also cause neuro issues. But this one does it in a way I found fascinating).

I don't have a lot of knowledge about aluminum specifically. I went down the mercury path specifically and metals in general. But metals toxicity is can cause a number of neurological issues in its own right, let alone in combo with any other dysfunction like autpimmunity or chronic infection. It can also play a role in biofilms. It's one of those perfect storm things - overwhelm the immune system, introduce an infection, add some environmental issues like metals or mold, deprive the body of certain nutrients in the american diet, and you end up with a knotted ball of string that isn't fixed with a one-pronged approach. The longer you stay sick, the bore knotted the string gets. I think it's certainly worth looking into. There are metals tests you can do (guess what - they are controversial - as is everything in the chronic infection universe!). You can use a chelator - DMSA, EDTA, DMPS - each have their own preferences for certain metals and there are several protocols you can consider. For some metals, you can also use various supplements that help the body naturally chelate. For example, zinc causes the body to naturally chelate copper because the two elements are somehow ying-yang, as are magnesium/calcium. Zinc also helps when you're chelating mercury because zinc (and B6 and other things) support chemical chain reactions in the body's detox pathway (the trans-sulfuration pathway). Supporting the liver (we use milk thistle but there are other things you can use) helps the body move the toxins out of the liver (think of the liver as a hepa filter) and into the bowels where they can be excreted. This isn't aluminum specific. But it's a good general health step everyone should take IMO. If you aren't with a naturopath or DAN or LLMD or other integrative doctor, seeing one might help you devise a plan and run tests for your specific picture. But I don't think you're crazy at all. (Ha! Like that should make you feel better!)

Suzan - so happy for you guys!! May this be the turning point!

This is only my opinion and you should certainly follow your doctor's advice, but I too freaked when i first started doing lyme research. It's not just Bartonella. You'll come to the same dilemma if/when you confront biofilms. Shold you supplement with x, y or z if the body needs it but the bacteria hoardes it? Here's where I've landed on the decision - you aren't going to starve the bacteria to death by depriving them of x, y or z. And chance are, if there's any x, y or z in the body, the bacteria are going to grab it before the body can use it. So the pain of any shortage is felt by the body first - at least that's my belief (not based on research, just my own reasoning). Antibiotics or herbs are going to kill the bacteria, not starving it of magnesium. The bacteria may not thrive as well, but they're not going to go away if you stop giving magnesium. But if you don't supplement, you will be starving the body of a really important mineral and your child will pay the price. I feel the same way about calcium and other elements that are needed by the body but also go into biofilms. My kids brains come first. I will confront the bacteria using other tactics. Now, this is just my opinion. I've read doctor views on both sides of the debate. So you have to follow your own gut and your own doctor - and most importantly - the response of your child's body. JMHO.

This is great info. I tried to pin it under helpful threads but royally screwed it up. All cylinders not firing tonight. Perhaps someone else can?

edit

Sorry - I don't have any answers. But I've been thinking of you lately. How are you holding up?

I'm probably the one who suggested resveratrol - for it's antioxidant properties. It seems to work on a number of issues. If you google a little, you can come up with a number of positives, even on PubMed, which usually has skeptical papers on natural products. I like the effect it's having on DS9 but DD7 is allergic (hives and itchiness). We also use milk thistle. If you are looking for other ideas, you can consider alpha lipoic acid, liposomal glutathione, bentonite clay (also available in capsules, which we found much much easier), activated charcoal, chlorella... I can understand your concerns about antibiotics. But it's a risk/benefit decision and sometimes it just takes more than what naturals can deliver. Some immune systems just need that extra help. As for the tics, my son was once a huge ticcer. So I get how heartbreaking it is - it's an "in your face" public showcase of how sick your son is. It's like some germ is saying "na na na na na". But...remind yourself that there are other things far worse. Having lived with both, I'll take tics over OCD any day. Tics are annoying and heartbreaking. OCD was downright terrifying. I think the tics were more of a test for me. It was something I had to work really really hard at. It made me face all of my own issues about whether it was important to fit in or not stand out or would people judge him...I was embarrassed. My son was almost oblivious (but then, he was 6 at the time). So I think as hard as it is to see the tics come back (an understandable PTSD response) it may mean that you are doing something important - something good. I don't know of anyone breezing through lyme treatment without herxing. So no response would actually be worse. I know that's small consolation, but it's all I can offer.