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Everything posted by Hierge

  1. Amen. Hat's off to PANDAS parents. Who hasn't cried themselves to sleep over their PANDAS child? I am worried about Blake though with the way others may treat her. I stole a peek at a note book I bought her at a dollar store. She's 12 and a classic pre-teen. She scribbled on one page "I (heart) K" K is the name of a boy in the 8th grade at her school. They next page had a scribbled depiction of a girl with the word "Ugly" and an arrow pointing to her. Blake has anorexia and is a bag of bones. My wife Sarah tells me Blake looks worse than most of the malnourished orphans she volunteered to help in Kyrgyztan four years ago. Her solution is to make Blake sit at her plate until it's clean. (Blake just sits there and quietly sobs.) Her immature teen daughter makes this even harder because Blake gets "special treatment." I react now saying, "we just won't eat with you anymore." Hey, I'd force feed Blake if I had to, but if all she will drink is water because she can't stand flavored drinks then I let her. If all she will eat is chicken nuggets, green beans, and macaroni then I thank the man upstairs she has an appetite at all. I need to get protein into her and if she will eat tacos and chicken I count myself lucky. This is not a normal situation or a normal child. If she were normal, she'd insist on Kool aid or soda pop. PANDAS makes her want to drink only water due to sensory overload. I can't change this no matter how much I want to force her. It's child abuse at some point. I agree that all PANDAS children are different and have to be parented accordingly. This is not science and is instinctive. I do think that there are prevailing social customs in American child rearing that are very bad for PANDAS children. I am willing to be called a bad parent and trust my instincts on this. It's made it hard for me, but I'm not the one suffering. I pray a lot and have gotten a lot of answered prayers.
  2. I agree with you that letting the skeptics name it is just fine. Nicola Tesla invented the radio, but Marconi stole his idea and gave all of us radio/television out of his own passion/greed. Tesla won the patent war after thirty years, but was a poor businessman. I know you are on the West coast and how hard this is to pull off, but I see plane tickets to San Francisco for $250 round trip all the time from DC. That's $500 bucks for the airfare. It shouldn't be more coming from your end. Someone would probably let you stay at their house off of this bulletin board. I live an hour and a half from Dr. L's office, but you are welcome to stay with my family. Have a bake sale. I'm sure your family and friends know your hardship and would contribute even with a short term loan. Dr. Latimer told me yesterday that there are only four doctors in the world (including herself) she considers qualified to treat PANDAS properly. So, everyone's in the same boat here. Perhaps we Washingtonians can set up a network of families who will provide lodging for appointments. I also know Dr. L does phone consults with other doctors. After witnessing her on the phone, I am confident she just gives orders to other doctors and they follow without question. I'd try that route first if I were you. I think she charges a couple hundred bucks for phone consults. Money can't be the issue here. Starve for a month if you have to. Ask people to help you. Get treatment now, what if this is a cumulative disorder like Rheumatic fever with permanent brain damage the outcome? Beth Maloney believes that it is cumulative. (She's not a doctor though.)
  3. I had my first appt with Dr. Latimer yesterday. When asked about yeast, she said that most PANDAS children are strangely resistant to yeast infections. She's never had to treat a yeast infection in a PANDAS patient. I mentioned oil of oregano for yeast infections to her and she hadn't heard of this treatment... so the incidence must be much lower for some reason.
  4. Augmentin XR 500 twice a day. Blake has an aversion to big pills so we are allowed only for Augmentin XR to cut them in half. She put her on a tapering month long dose of Prednisone 10 mg. We will watch how she responds to this and will consider IVIG. Dr. Latimer expressed shock that Blake's tonsils were still intact with the strep problem and I repeated that the ENT doctor Gupta we saw last insisted that taking tonsils out would have only a marginal effect. We have a problem with tonsils with Blake because PANDAS causes her to be deathly afraid of many things including tonsillectomy. I almost bled to death at 10 years old from this procedure and Blake knows this. Her friend almost bled to death two years ago from tonsillectomy. This ain't happening, at least not until she recovers from PANDAS. Dr. Latimer explained that PANDAS does not go away after episodic treatment with antibiotics. That was a huge deal for her mom to hear. I knew this all along, but mom was indoctrinated by all the doctors she met over the last four years. She never dug into this as deeply as me. She spent her time trying to "normalize" Blake through bullying. Blake's not allowed to cry in her mom's house or she gets grounded. Well, she's deathly afraid of things and she cries at the drop of a hat. How's bullying in this instance not child abuse? I was accused for years of being a bad parent for treating her like a PANDAS child with compassion. I would hold her until she stopped crying like a small child. Her own mom thought that was coddling. (Including my now wife Sarah who is military.) Dr. Latimer did say that not all PANDAS children should be spared carrots and sticks, but in Blake's case it was the humane thing to do. I am so grateful her mother heard this from Dr. Latimer's mouth. It was instinct for me. It's easy to mistreat your PANDAS child and lose it, but that's just self-indulgence. Go outside, take a breath, scream in a paper bag if you have to. Do not take this out on your PANDAS kid. I have been begging her nine year old sister for years to please not take Blake's behavior personally. She has had it hard sometimes, but like any human being she loses it from time to time and will use her 30lb weight advantage over her anorexic sister to accidently "bump" her into a wall or open drawer causing much pandimonium. Perri would feel horrible guilt about this too and have her own quiet tantrums. I always spend private time alone with Perri to make sure her over attention getting sister isn't getting all the attention. It's hard being a parent of these types of children. I agree with the earlier reply about you can see it in the mother's eyes. It's just such a huge relief to know your child is going to get better, or at least has a good chance of getting better. I'm telling anyone who will listen to me about how happy I am. It's a big deal to get that final diagnosis and prophylactic antibiotic. Oh, Dr. Latimer told me (I just remembered) that PANDAS children are remarkably immune to yeast infections for some reason which most people get with prophylaxic antibiotics. This shocked me. She says she only rarely has to treat yeast infections that would make any one of us parents suffer with the same treatment. No explanation for this. I just assumed we'd have to become experts in treating yeast infections.
  5. Update: New treatment for Blake per Dr. Latimer - 500mg Augmentin XR twice daily, 10 Prednisone tapering off after 30 days, possible IVIG after initial treatment. Taken off 26mg Concerta daily. Greetings all, I made an appointment with Dr. Latimer in Bethesda MD the day after the OCD Conference in DC. Thanks much to the parents who raved about her at the dinner. Thanks also to Beth Maloney who insisted that I do this immediately. I found out yesterday that Dr. Latimer actually takes ONE insurance company and for military families like mine, we lucked out. She's part of Tricare. I'm not sure if other companies will cover her hefty initial consult fee and subsequent visits, but I'd definitely try. I wish I had known to:"BITE THE COST BULLET" and go to Dr L sooner. Don't let your child go four years like I did in failing my beautiful sweet girl Blake. She should have been in this appointment four years ago. I had my ex-wife with me in the appt. After it was all over and in front of Dr. Latimer, I apologized to Blake for failing to get her the proper treatment which has led to so much suffering for her. The ex-wife who battled me at times over the past four years thinking I was being knee jerk had tears streaming down her face. Victory at last. We started with the details of how Blake was diagnosed. We had it down to the day it started. It was a friday in March 2006 when our child changed overnight. The details are similar to the stories of other PANDAS children. Dr. Latimer is a tough questioner. She'd stop us repeatedly and make us go back to points where she wanted more information. She took a lot of notes. She didn't have all the medical information she wanted so she dialed up the office of the first pediatric neurologist who diagnosed Blake. Apparently Dr. Will Young who was on call at Fairfax Inova Hospital had been trained at Walter Reed and knew PANDAS well. Dr. Latimer knew Dr. Young well. Thank God for that, I say! But... I felt Dr. Young dropped the ball on Blake. We didn't pursue this, but this is the main reason I had to apologize to my daughter. Dr. Young told me he could treat PANDAS with steroids. She saw him once in his office and I was not at the appointment. He did basically nothing after treating her with intervenous antibiotics in the hospital. Dr. Latimer told us that we caught this very early and the antibiotic treatment she got is probably the reason she is a fairly mild case on the spectrum now. Anyway, she called his former office and gave specific orders she expected to be followed regarding the transfer of Blake's records. Dr. Latimer is all business here and expects results not BS in getting records. She does not suffer fools well at all. (That's what I want in MY daughters doctor!!!) We gave detail after detail. Dr. Latimer would occasionally break into stories of her own, show us an article on PANDAS research, or fire off statistics. She told an amusing personal story about her sons in church, but I don't want to betray her confidence. She's got a good sense of humor, almost all business, but a little humor in there. She then transitioned to actually test Blake. The first hour Blake sat there doing piano movements with her fingers and tapping her feet. She fired off all types of facial tics which Dr. Latimer commented on telling us that she's an expert on facial tics. There were tests with touching her nose, Sydenham's chorea tests, rubbing her toes down her legs... Blake doesn't have Chorea movements. Phew. I thought she was a dead ringer. After returning to her office. She tells us that Blake has anorexia which is common in 30% of PANDAS children. Blake's mom has never accepted this until today. 69 lbs at 12 years old. We agree that her ADHD medicine Concerta is not appropriate. Blake's mom wanted to keep her on Concerta. Dr. Latimer said pointedly, "She has PANDAS, not ADHD. We need to treat PANDAS." This is the winning phrase in the battle I fought for the past four years with her mom. Praise God. We go into family history. Dr. Latimer was mostly interested in paternal history on my side of the family. She questioned me about my nutty father telling me he was probably suffering from Aspergers Syndrome if what I said was accurate. She focused on my brother's Rheumatic fever for which he received prophylactic antibiotics in the early sixties. We talked about how Blake's mom had a strep infection when Blake was born and rheumatic symptoms for months after her birth. We talked about all the heart murmurs in the family. I finally asked Dr. Latimer, "so, it's a lock here, Blake has PANDAS right?" "Defiinitely, she's a classic case. Not even marginal." We then listened to Dr. Latimer tell us about the NIMH conference last month that she says changes the entire playing field. She said that many PANDAS watchers are disappointed with the NIMH press release on this. She says that the press release is basically akin to the Pope changing his mind... like saying the Catholic church was now Presbyterian. Words to that effect. She says that the entire world of mental health is about to change finally. She says it was a blood bath conference. They brought in the skeptics and it got nasty. She said that her data along with three other doctors was powerful enough to take the day. Two doctors from Hopkins were convinced and changed their minds. These are influential doctors. The kicker is that they aren't going to use the term PANDAS anymore. It's "radioactive" (her word.) The new medical term will be named for one of the turncoat doctors who changed his mind. I told Dr. Latimer thank you for not being proud here and wanting the glory. We need to treat children. It seems glory never crossed her mind at all... Blake was taken off Concerta. She got a prescription for Augmentin 500 mg twice a day. Prednisone 10mg tapering off over a month. IVIG possibly in the future. I ran my anti-inflammatory scheme past her with non-antibiotic doses of doxycycline and emycin. She shook her head telling me that anti-inflams are not a primary treatment she'd use for PANDAS. I mentioned my meeting Beth Maloney. She said that Saving Sammy had a few issues she felt were not accurate regarding PANDAS itself. I didn't fully understand this, but she went into an explanation of the blood brain barrier, antibodies. I will ask her to explain in the future. We are ordering more tests and will be back in a month.
  6. I just received my first bottle of "Food Grade" hydrogen peroxide 8%. I have persistent sinusitis myself due to a chronic infection. The Neti pot has been great for me and I add a small amount of peroxide before I irrigate my nose using the Neti pot packets of salt and baking soda. There are some decent guides on the internet with folks who have completely cured sinusitis this way. Antibiotics don't do well at all on sinus infections according to what I have read. The first thing I noticed after using the weak peroxide in addition to the Neti pot packet is strong smells. I immediately picked up on a cat visiting the cat box across the house. I also smelled incense weakly coming from the basement which caused me to interrogate the teenagers. These are smells I would have missed. Food grade has no stabilizers so it is safer. I'm no expert here, but it works for me.
  7. Wow Stephanie! It seems that you are very experienced with anti-inflammatories. I am going to talk to Dr. Latimer about them. I actually started Curcumin this morning myself. Another vital supplement Dr. Barry Sears discusses is baby aspirin. There are actually aspirin generated Eicosinoids which have a major beneficial effect in small doses. One baby aspirin a day is enough to do it. Wow Stephanie! It seems that you are very experienced with anti-inflammatories. I am going to talk to Dr. Latimer about them. I actually started Curcumin this morning myself. Another vital supplement Dr. Barry Sears discusses is baby aspirin. There are actually aspirin generated Eicosinoids which have a major beneficial effect in small doses. One baby aspirin a day is enough to do it.
  8. Thanks Emerson, sorry for the delay in getting back to you. I have been very busy this summer! Not sure if I'm helping here with your vegetarian diet being in my mind a major problem for you which could possibly be causing your PANDAS to be much worse than it should be. My daughter Blake used to eat meat and it is slowly disappearing from her diet. This worries me. Human beings aren't vegetarians. Your teeth are a carnivore's teeth which means we are all carnivores. I understand that meat can be gross when you think about it, but unless it is definitely causing you real problems I think that adding fish and some chicken to your diet is critical to your future health. If you really want to know where you stand on inflammation, find out more about a test called AA/EPA from Dr. Barry Sears of "The Anti-Inflammatory Zone" book. I am rereading that book right now. Sears is good friends with Dr. Amen who is a top expert on ADD. He says that the elimination of Omega 3's from fish oils in the diet after three generations is what is causing the current epidemic of ADD/ADHD. Sears says that ADD children are similar to Altzheimers patients in that they have a fish oil "supermetabolism" which requires that they be treated for silent inflammation with really huge mega doses of fish oil. He has to give these children 15 GRAMS per day in order to bring their AA/EPA level down to a level of 2. I suspect that your AA/EPA ratio is astronomical... something on the order of 50 maybe as high as 100 which is the highest Sears has witnessed. If this is the case then you have massive silent inflammation that needs to be addressed. The only way he indicates you can do this is through an anti-inflammatory diet, megadose of fish oil in capsules, and exercise. Blake is begging to be taken off of Concerta. I am in a major disagreement with her mother on this. I hope Dr. Latimer will help settle this in September. Take care Emerson. Emerson, Glad to hear you are on this forum too. I have been worried about you actually as you are looking for a new doctor. Omega 6 oils are "poisonous" from an inflammatory standpoint and will really affect your PANDAS in a bad way. Corn oil, canola oil, and all vegetable oils EXCEPT for Olive Oil cause massive inflammation. Cut all of them out of your diet immediately. (Including Doritos, Cheese Nips with Omega 6 trans fats mixed with pure carbohydrates - death food for inflammation) Use only Olive Oil and Butter. I personally buy Omapure IFOS certified Fish Oil at $20 per bottle of 120 capsules. You buy them in lots of 10 to get this price. For your condition, I would take 15 capsules of Omapure per day which is an Eskimo dose. This will dilute the Aracidontic Acid (AA) which is causing the inflammation in your brain. The EPA in pure Omega 3 IFOS fish oil can only dilute AA which will result in decreasing inflammation. If you get on this fish oil and go off of it for two weeks remember that you will return to your previous inflammation state. If you quit, you go back in other words. There are other benefits to the fish oil, but you'll know them soon enough. Please stay away from useless flaxseed oil, Omega 3,6,9 supplements and other brands of Omega 3 which are not 2/1 ratio EPA/DHA and IFOS certified for pharmaceutical grade. The best you can get is OmegaRX by Dr. Barry Sears. Get the liquid oil if you can afford it. Sears' products are the state of the art. I am not sure why Blake is on Concerta. Her pediatrician keeps her on it because she was misdiagnosed with ADHD. She will fail out of school if she is not treated for this. When she is treated she, like Sammy, gets perfect grades. I'm not sure how I feel about this... good grades... malnutrition on the other hand. It's hard to worry about school with PANDAS, but I'm not the custodial parent here. I am winning a slow, but difficult battle with her mother for recognition of PANDAS cutting edge treatment. Blake's mom thinks I'm in this because I'm overreacting. She sluffs off the strangest behavior as normal when it is PANDAS. It's been a real problem. In all honesty, you blow me away with just how much you know about this. I have been taking flaxseed oil, but I'm not sure of the dose. Animal products do NOT bode well with me at all, so would fish oil still be a good idea? I can eat dairy, but I haven't eaten meat in six years. I just don't want to take it & find out that even though it's relieving the inflammation, it's setting off something else. I had NO idea about the vegetable/canola/etc... oil, thank you so much! I don't eat much cooked with oil since my diet is so restricted but I will be sure to stay away from them now. What is OmaPure? I don't believe I've ever heard of that before. What does it do, where can I get it? Pharmaceuticals for misdiagnoses are a slippery slope. Have you seen any positive results on the Concerta, in respect to attention problems or anything else? & I remember you talking about your wife's lack of support. I'm very sorry. Don't give up your fight! Get custody if at all possible so that your daughter can get better! Parents like you are inspiring. Best of wishes to you & Blake. <3
  9. i havent heard that it surpresses the immune system.... i saw something on a study out of norway???if children get more fish oil (and maybe it was in realation to the epa/dha) they have less or no allergies as adults....something about traing the brain???? i dont' know how good or reliable this blog is but it talks about fish oil for lung improvement, fighting bacteria in the mouth.... again i don't know just the messengar http://www.fishoilblog.com/ ju Dr. Barry Sears is the world's top expert on fish oil and diets. As I said in the post, read his books. I'm a little taken aback how some replies are non-sequiturs that flow seemingly from reading the subject line and nothing further. Please, I put time into this. Read my post again.
  10. Well... steroids have an imunosupressive effect. Unless your kid is on prednisone I wouldn't be too concerned about that. I'd like to know where you read this actually. I've read extensively on fish oil and it sounds a little far fetched to me. I've certainly never read what you claim to have read. Don't believe the internet. Read the books I recommend by a doctor following a Nobel Prize in medicine. Instead of complaining about studies that contradict, try posting links to them please. I find it hard to believe that fish oil has been shown to have any detrimental health effects.
  11. Lovaza in my mind is the medical community trying to jump on the fish oil train after it has left the station. They desperately want to make money and for them fish oil is a potential huge profit machine. I don't think there it is an iota better than Dr. Barry Sears OmegaRX brand. I think they are only getting in on the dosage game. I will be extremely irritated if they now start to regulate fish oil as a drug because of Lovaza. Very irritated. The only reason in my mind to take Lovaza is if insurance will pay for it. Otherwise go for Dr. Sears Zone brand or Omapure if you want to save cash. I have two bottles sitting on my desk in front of me and a case of it in the car going home with my little girl to make smoothies. She drinks them without complaint. I'm not sure where you are getting your dosage information, but you may want to reread my post.
  12. OmegaRed is Krill oil. It's more expensive. I tried it for a few weeks at the beginning which was in May of last year. I felt wonderful, but since it was the beginning of my own treatment it probably felt different at the beginning. I'd definitely recommend Krill oil, but not sure how to dose it. If you want to be safe, go with OmegaRX brand from Dr. Barry Sears the zone. There is another Dr. Sears who likes to get business off of confusion with Dr. Barry Sears. He has a "Dr Sears" brand which is a poor knock off. I actually picked up a bottle of MegaRed the other day at the commissary and almost bought it just to test it out again. You folks need to seriously get more familiar with all types of fish oil and experiment on yourselves too. I've done this extensively. The water's fine, just jump in the deep end. The people in the pool are having fun.
  13. My name is Dave Hiergesell and I am new to the group. My daughter Blake has PANDAS and is 12 years old. I have personally been taking high dose fish oil since May 2009 in what is termed an "Eskimo Dose" which is pretty easy to figure out as to why it's named that way. I never quite developed a taste for Walrus blubber though. The Eskimos and Japanese have the lowest levels of chronic disease in the world. Smart people who study these groups isolated their diet as the major contributor. It wasn't the level of fats vs. protein, it was the type of oils they got in their diet, mainly Omega 3 fatty acids. One problem though... Due to coal fired power plants across the world, oceans lakes and rivers are polluted with mercury and PCBs. We can't fix this anytime soon. So, even though the Eskimos and Japanese have a lot of fish in their diets, they are being exposed to toxic chemicals. Still, their levels of chronic disease are very low. What is the benefit of the fish oil they are getting in their diet? There is a little known chemical in the blood stream called Arachidontic Acid or AA for short. This chemical can be so toxic in high doses that if you inject it into rodents in the lab setting it will kill them in under a minute. You can do the same to a human being with the same chemical. When you eat the yellow part of an egg, or a lot of red meat you are getting AA directly in your diet. If you eat trans fats or vegetable oils (Omega 6 oils) mixed with high glycemic index carbs (boxed snack foods) your body immediately converts this into AA in the blood stream. Then something really bad happens. The AA starts creating inflammation in the body. This inflammation is manifested in chronic diseases. The most cutting edge research from the most important universities in the world such as Harvard are now putting the picture together that inflammation is the true enemy here in all chronic disease. Dr. Barry Sears is my personal guru on these matters. I have read four important books by Sears that should be read by all PANDAS parents: The Anti-Inflammation Zone, The OmegaRX Zone, Enter the Zone, and Toxic Fats. Dr. Sears is the most famous diet doctor in the world right now and bases his own research on the 1978 Nobel Prize in Medicine for the discovery of hormones called Eicosinoids. Sears currently holds the world record for weight lost by an individual Manuel Uribe in Mexico who has lost over 400 lbs off of his 1200lb frame. Dr. Sears calls Uribe "the healthiest man in Mexico" even though he still weighs nearly 800lbs. Fish oil is the main reason, combined with an anti-inflammation diet and exercise. Manuel takes a HUGE dose of fish oil to combat all the silent inflammation in his body due to all that fat that he is losing slowly and safely due to Dr. Sears running his treatment. So, how does this fit in with PANDAS? Many parents on this forum supplement with fish oil and it seems like it's pretty well accepted. What I have found though is that few really know how to supplement properly with the right products and in the right dose. There are only two ways I know to treat PANDAS: 1. Remove the source that is causing the inflammation. (Kill the strep or get rid of the antibodies) 2. Treat of the inflammation. (Antibiotic anti-inflammation effects, NSAIDS like Ibuprophen, Steroids, ice packs on the head, anti-inflammatory diet, anti-inflammatory supplements) Fish oil clearly falls in the second category. Taken in high enough doses, it is an extremely potent and safe option for parents of PANDAS kids. We have to get these kids into Eskimo doses though. That means something different for each child, but in my own case I am treating my daughter according to general guidelines in Dr. Sears' books. I have not had her blood AA/EPA ratio tested though. (I understand enough to be confident in giving her a certain high dosage without any worries.) Back to Arachidontic Acid (AA) The only way to get rid of AA is to remove egg yellow and red meat in the diet, eliminate dietary Omega 6 fatty acids AND to... Dilute it in the body using Eicosapentaenoic Acid (EPA) and Docosahexaenoic Acid (DHA). (You do need enough AA to clot normally though.) Since the body does not make EPA and DHA naturally, it has to come from the diet. Unfortunately, as the properly maligned American junk food diet has proven over the years, the AA/EPA ratio (which is the best blood test indicator of silent inflammation) of an average American is very bad on the side of AA. PANDAS kids from my own experience and from anecdotal reports from other parents are notoriously bad. This may be due to sensory overload or other factors. It really doesn't matter. Try feeding a Japanese type diet to a PANDAS child. "How do you like that raw cuttlefish and salmon sweetie?" Not happening. The ideal AA/EPA blood ratio for anti-inflammation is 1.5 with a maximum of 3. The average "healthy" american is 11 - 14. The average "unhealthy" American is higher. Some children register a value as high as 100. Why? Because they have a diet high in trans fats mixed with high glycemic carbohydrates. Sound familiar? If you have PANDAS, this level of silent inflammation is probably downright dangerous. I remember thinking when I read Saving Sammy by Beth Maloney that she was so freaked out by his intense behavior that she wasn't able to get him to eat like a normal child for months on end. That is WHEN he would eat. I imagined poor Sammy's body starting to digest his own muscle fiber out of starvation and malnutrition. THAT is REAL inflammation when your body starts digesting itself! No wonder Sammy had extreme PANDAS. It's bad enough before a child stops eating normally. Imagine how bad it is after... Only one way to dilute the bad Arachidontic Acid then. Flush it out with EPA/DHA in high doses for the long-term. You cannot do this with the recommended dose on the back of your Costco or Walgreens supplements. You wouldn't want to take these supplements anyway. They aren't pure enough to take in high doses. Let me say that again. They aren't pure enough to take in high doses. There is an international certification body called IFOS (google it please) that tests batches of fish oil and rates it on a number of different criteria. Dr. Sears in OmegaRX said correctly at the time that only his brand of fish oil and Omegabrite passed the rigorous tests he considers safe for fish oil to be taken in high enough doses. Now, there are many more brands that have passed IFOS safety certification making it "pharmaceutical grade." Pharmaceutical grade is kind of a misnomer, but it gets the point across for purity sake. There is a new heart drug on the market made of fish oil now so I guess it is really pharmaceutical now. I personally go for cost per gram of EPA/DHA since real fish oil is so expensive. If you have 100 gallons of the average fish oil shelf brand, only one gallon would make it into the IFOS certified category. I use Omapure which costs about 1/2 of what Dr. Sears charges for the "good stuff." I am paying about $1.50 per day for Blake at her dose. It'd still be relatively inexpensive to go with the Dr. Sears brand though. He has IFOS certified liquid too. It's $80 for an 8oz bottle, but still cheaper gram for gram than store bought supplements on the key EPA/DHA ingredients. There's also talk of EPA/DHA ratios. There are different opinions on this, but to me only two valid ones. Dr. Sears recommends a 2:1 ratio of EPA/DHA. The Harvard studies recommend a slightly higher EPA ratio like 2.5:1. Either way, given in high enough doses it's not going to matter that much. Omapure has the amount listed in the Harvard study and they are slightly more potent than Dr. Sears brand. Here's what happened to me as the human guinea pig for this. I noticed nothing much for the first few days of taking 16 capsules per day. I then noticed my chronic low-level depression evaporate and it hasn't come back since. I then noticed my memory getting so good that after six weeks I recited a thirty item shopping list missing no items from the car after going to the commissary. Ladies, I remembered ALL OF THE ITEMS my wife asked me to get with NO LIST. This has never happened to me in my life. My family has rampant cancer, heart disease, rheumatic fever, Crohns, you name it. I am 46 years old and overweight. I am now a smaller version of the healthiest man in Mexico. Fish oil is a key here for parents like us to safely fight inflammation long-term in our PANDAS child. Bottle recommended doses of fish oil are better than nothing, but will have little theraputic effect. Non-fish oil sources of Omega 3 fats are next to worthless. Flaxseed oil too, unfortunately. Dr. Sears recommends a dose of over 10 grams per day for neurological disorders. I am not quite there yet with Blake, but will get her there when she gets above 70 lbs at 12 years old. I strongly recommend that you read the books that I mentioned. If you are too busy then you can simply trust me because I have researched this for years. Dr. Sears is the gold standard on this issue. I know his writings pretty well and can speak knowledgably on most aspects of his research and recommendations. Remember at the end of the day what we are talking about here? Fish oil. It's just oil. It's not a steroid. It's not going to cause untreatable strains of bacteria in overuse. It crosses the blood brain barrier better than any anti-inflammatory substance in existence. It is a critical dietary component that is sorely lacking in the American diet. You can test AA/EPA levels with a blood test that you have to send away to a certifed lab. (Check Dr. Sears again.) Dr. Sears, to be fair, never mentions PANDAS in his literature. He probably hasn't even heard of it. He treats ADHD kids and Autism with high dose fish oil with promising results. The key here is to not be afraid and give it in proper doses. Good luck. I hope that what I have learned helps you. I will keep a running log of how Blake is doing on fish oil and let you know how it is going. Cheers!
  14. You will benefit from reading Dr. Barry Sears's Omega RX Zone. You can get it from Amazon used for less than ten dollars. Flaxseed oil has to be converted by the body to EPA in the body. In reality this never happens in significant enough levels to affect silent inflammation. It's a complete waste of money and time. IFOS Certified pharmaceutical grade fish oil is the only option here, in high doses. Sears has other books I'm recommending called "The Anti-Inflammation Zone" and "Toxic Fats" which can explain more. Omega 6 fats such as vegetable oils and trans fats must be removed from the diet and high dose purified EPA/DHA administered. I have no personal vendetta against Flaxseed oil. It just doesn't have any beneficial effect on inflammation at all. It is a long chain fatty acid, but it will not dilute Arachidontic Acid the same way that EPA in fish oil will. Dr. Sears has a great brand line of fish oils if you can afford them. I use Omapure which I have researched fully. I am going to see if Omapure will offer a discount to PANDAS group parents soon.
  15. Dr. Barry Sears is the most influential Omega 3 doctor in the world. He says EPA/DHA ratio 2:1. The Harvard studies have it at slightly higher EPA. Omapure brand which is what I use, has it at the Harvard level. I have personally been taking Eskimo doses of 10 grams per day for 18 months. I just started my PANDAS daughter Blake on the Dr. Sears "Big Brain Shake" which has 7 grams per day. This is a high dose, but for Neurological conditions, this dosage is necessary. It's just oil though. It's completely safe to supplement at these doses especially compared to steroids or antibiotics. There's a slightly elevated risk of thin blood. Omapure is $20 per bottle in lots of 10. There are 120 capsules per bottle. This is an IFOS certified pharmaceutical grade fish oil. You do NOT want to feed your child anything other than IFOS certified oil. Omapure is the cheapest per capsule with this high a dose of EPA/DHA. Big Brain Shake Frozen or fresh berries (We put in one banana and 10 strawberries) 2% milk (1/2 cup) 10 capsules Omapure cut and drained Ice blended Blake has been doing very well on this dose. She reports that her depression has completely lifted after several days. She wants to get off of Concerta and is lobbying hard to continue this treatment instead. Anecdotally, she's much more "lucid" in conversation and is noticably happier. Her symptoms of PANDAS are not as bad as most other children on this list, but she seems better. It's only been a week. It takes several weeks to start taking effect.
  16. Blake has never had oil of oregano because she's never been on antibiotics for more than a short period. I anticipate that it will be difficult at first. Putting it in capsules will be better, but we may have no choice. This would be a short term treatment for yeast infections. When the yeast is dead then it's over.
  17. Thanks Kim, I have read a little on the Cunningham test and am not convinced yet that it will mean alot to us right now. I agree that finding a definitive test for PANDAS is imperative, but I don't need to be convinced. Blake has PANDAS and I have enough data already on her where another test isn't going to help. If Dr. Latimer will not treat unless she sees results of this test then that's another thing. I am most interested in getting treatment now, not trying to decide whether or not she has PANDAS. She does.
  18. I wanted to post a separate topic on this. I plan on posting my best knowledge also on Omega 3 fish oil high dose pharmaceutical grade too, but first things first. I did a great deal of reading a few years ago about Candida infections and how they can mess with your brain etc. If you have a PANDAS child on prophylactic antibiotics pay attention. The antibiotics are going to kill all the bacteria in the digestive tract. This is BAD because there are good bacteria that keep yeast from growing unabated. Antibiotics kill the good as well as the bad. What do you do? Give probiotics. You need to start planting grass after you've killed everthing in your yard, but what about the weeds? Oil of Oregano is the personal favorite of the deceased Dr. Atkins of Atkins Diet fame. Like him or not, he was a brilliant doctor. He had strong feelings about Candida and how it would stop some people from losing weight on the Atkins Diet. So... He hated all the treatments for Candida, especially some prescription treatment that didn't work that well. He said by far the best treatment for Candida yeast infections is Oil of Oregano. Most Oil of Oregano is garbage. You need to get this with very high Carvacrol content. This is the active ingredient. The sweet spot is the strongest Carvacol per ml at the lowest cost. I found this years ago and bought enough to keep me yeast free for years. Only a few drops mixed with olive oil make a devil's brew that will kill Candida. This is NASTY stuff. Imagine Oregano Oil mutated from Habanero peppers. Raw oil will burn your mouth worse than the strongest peppers you've ever eaten. Mixed with olive oil it is tolerable. You use an eye dropper and put about six drops under the tongue so it goes into the blood stream quicker. Bye bye Candida yeast. It is also considered a VERY powerful antibiotic. So, it may kill some bacteria that other treatments are missing. Here's a link to where I bought mine with the additional eyedropper bottle: http://www.se1.us/health/oregano/ It's $20 bucks an ounce. You have to dilute this at least ten to one or risk blistering your mouth. It's 85% carvacol, the strongest you can possibly buy. This is your best possible cure for yeast infections. Trust me.
  19. I'm with you Tmom, but not sure where Omega 3's are involved in building the immune system. Even if they were, how do we know it's a good idea to mess with the immune system? With H1N1, anthrax letters, bird flu etc., do we want to mess around with things that hurt the immune system? Omega 3's in HIGH DOSE that are extremely pure nearly as strong an anti-inflammatory agent as prednisone. All of this without putting a damper on the immune system. Prednisone is like a thermonuclear bomb. It will definitely kill the bad guys, but it also kills the good guys. And... the effects are bad long-term. I'm not sure mega dose of Vitamins such as C and D are advisable in children. You can actually cause scurvy after taking yourself off of mass doses of C. I'm not sure what the toxicity of Vitamin D is, but I'd be careful about this. My take on this is: don't worry about the immune system. Leave it alone. Don't mess with it unless absolutely necessary. Omega 3's will not affect the immune system one way or another. Please read Omega RX by Dr. Barry Sears and the Anti-Inflammation Zone. Available used from Amazon for less than ten dollars.
  20. I'm getting there. I do know that some staph colonies are nearly impossible to kill. Even bleach with water won't kill some of them. It's all magic to me how the immune system works. I'm definitely prepared to believe in intercellular bacteria causing PANDAS. What about this: What if we CANT KILL the bacteria in the body no matter how many antibiotics we throw at it? What then? All you can do is treat the inflammation and hope for the best. I say we all get smarter about the inflammation part of this and focus with more intensity on this front than on trying to kill intercellular bacteria technology doesn't have the ability to kill in 2010. I agree with fighting all the battles we have to fight, but for now inflammation seems like the lowest hanging fruit to pick.
  21. TRG, I'm not disputing your experience with "Omegas", but I'd like a little more information from you before I buy that they were causing terrible effects on your daughter. I am vaguely aware of Omega 3 oils that product manufacturers claim are added to foods, but like everything else marketers do it's a joke. I have read multiple books on Omega 3 fats and find it very hard to believe that the real and pure oil could have anything but a hugely positive effect on inflammation, and PANDAS of course. The only bad thing about Omega 3 supplements is that they contain unsafe levels of mercury and other toxins in the cheap store shelf supplements found at Costco, Walgreens, Safeway or GNC for that matter. You need to supplement with pharmaceutical grade IFOS certified fish oil ONLY and in HIGH DOSES. They refer to these doses as "Eskimo Doses" of fish oil. This means that you are giving your child a similar dose of fish oil to that of the average Eskimo in a country like Greenland where they eat mainly fish for all meals. PANDAS and autoimmune disorders along with cancer, heart disease, and other chronic diseases are statistically lower in these populations. Mercury is nasty stuff along with PCBS. Fortunately, you can supplement with purified fish oil which may be expensive, but it's something you need to try again. Stay away from eggs etc. and cookies that tell you they have Omega 3's. Read the book Omega RX by Dr. Barry Sears and his other book the Anti-Inflammation Zone. I don't want to dispute you here, but it's virtually impossible outside of a food allergy to have Omega 3s cause PANDAS to actually get worse. I'm with you on Augmentin.
  22. Emerson, Glad to hear you are on this forum too. I have been worried about you actually as you are looking for a new doctor. Omega 6 oils are "poisonous" from an inflammatory standpoint and will really affect your PANDAS in a bad way. Corn oil, canola oil, and all vegetable oils EXCEPT for Olive Oil cause massive inflammation. Cut all of them out of your diet immediately. (Including Doritos, Cheese Nips with Omega 6 trans fats mixed with pure carbohydrates - death food for inflammation) Use only Olive Oil and Butter. I personally buy Omapure IFOS certified Fish Oil at $20 per bottle of 120 capsules. You buy them in lots of 10 to get this price. For your condition, I would take 15 capsules of Omapure per day which is an Eskimo dose. This will dilute the Aracidontic Acid (AA) which is causing the inflammation in your brain. The EPA in pure Omega 3 IFOS fish oil can only dilute AA which will result in decreasing inflammation. If you get on this fish oil and go off of it for two weeks remember that you will return to your previous inflammation state. If you quit, you go back in other words. There are other benefits to the fish oil, but you'll know them soon enough. Please stay away from useless flaxseed oil, Omega 3,6,9 supplements and other brands of Omega 3 which are not 2/1 ratio EPA/DHA and IFOS certified for pharmaceutical grade. The best you can get is OmegaRX by Dr. Barry Sears. Get the liquid oil if you can afford it. Sears' products are the state of the art. I am not sure why Blake is on Concerta. Her pediatrician keeps her on it because she was misdiagnosed with ADHD. She will fail out of school if she is not treated for this. When she is treated she, like Sammy, gets perfect grades. I'm not sure how I feel about this... good grades... malnutrition on the other hand. It's hard to worry about school with PANDAS, but I'm not the custodial parent here. I am winning a slow, but difficult battle with her mother for recognition of PANDAS cutting edge treatment. Blake's mom thinks I'm in this because I'm overreacting. She sluffs off the strangest behavior as normal when it is PANDAS. It's been a real problem.
  23. Laura, Thanks for the detailed response. Read up on Oil of Oregano for yeast infections. There is no more powerful candida fighter in the world than really powerful Oil of Oregano. I have a bottle of the concentrate with the highest rating of the active chemical for effectiveness. Some survivalist store in the west grows and stocks the best stuff in the world. They use it for a natural antibiotic and yeast killer. I can get you the name of the place because they send me emails on a regular basis. I can't get off their list even though I'm not a survivalist. You have to use an eye dropper to dilute it with olive oil and then put several drops under the tongue each day to completely kill candida yeast. Dr. Atkins the famous diet doctor was big on killing candida yeast infections and raved about this cure. It is NASTY stuff though. It is so overpowering on the oregano side that you will not want to use the spice on your pizza again for a while. Imagine oregano so spicy and powerful that it's on the scale with Habanero peppers. It costs about $20 per bottle which will last for years. Dave
  24. Hello, My name is Dave Hiergesell and I have recently joined this group in order to learn what I can about PANDAS treatment to help my daughter Blake. I have received a lot of great advice about this and I am implementing many of the ideas I have gotten. Thank you very much. I'd like to bring a topic up for discussion as a kind of "null hypothesis" which could actually be tested at some point in the future, but for now it may be worthy of discussion. In this particular case, the null hypothesis is that there is no relationship between improvement of PANDAS symptoms and the anti-inflammatory effects of the antibiotic being administered. As an "experimental hypothesis" I'd like to propose the following: It is my suspicion (nearing a belief) that the primary clinical improvement in symptoms of PANDAS children who are taking antibiotics (prophylactic or otherwise) is due to the anti-inflammatory characteristics of certain antibiotics. The improvement is due to the reduction in inflammation REGARDLESS if there is any infectious agent there or not. I realize that I've waded deep into the swamp of the controversy over antibiotic treatment of PANDAS and am on an island now. I believe that only through intense discussion and resultant research will we ever be able to get real answers on this disorder and agree on the safest treatment protocol possible. I'm going to play devil's advocate here on antibiotics. Personally, if I were Sammy's mom (or any other parent with a bad PANDAS case on their hands) I'd fire doctors until I found one willing to treat with prophylactic antibiotics. You give Sammy 2000 mg per day of Augmentin XR and his symptoms subside, then I don't care about the bad things other doctors say will happen by keeping him on this regime. He is a physical danger to himself at this point. Side effects of not giving him this treatment outweigh what the doctors are worried about. Its a moral choice at this point and the doctors don't have to live with Sammy. Here's a different twist on this: Let's suppose for a moment that Sammy's PANDAS restricted diet of not eating for days on end, or eating only foods such as watermelon etc. are causing INTENSE inflammation in his body way above and beyond PANDAS. Let's say his body starts basically consuming itself due to malnutrition which is MAJOR inflammation. My daughter Blake who has PANDAS is malnourished due to the fact that spices and other flavors most people take for granted in their diets are way too strong for her in a sensory capacity. She only drinks water because she reports that other drinks are too strong for her. She's practically a vegetarian now. Prior to PANDAS she ate and drank everything we gave her. So, the malnourished PANDAS child is now going off the scale in terms of inflammation due to self-imposed DIETARY anomalies as a result of PANDAS. This would be like "turbo charging" PANDAS with inflammation off the scale. The more restricted the diet, the worse PANDAS becomes. Now, enter the doctor. Let's say the doctor gives the malnourished "turbo charged" PANDAS child a blast of steroids. Symptoms resolve almost immediately. Inflammation zapped, symptoms resolve. Now the clock is ticking though. The steroids start doing their work on the immune system and the symptoms start to accumulate. Zap, the child is taken off steroids. PANDAS returns. Enter antibiotics. Augmentin XR has been shown in studies to have a positive effect on Alzheimer's sufferers. Are we to assume that the Augmentin is killing some sort of infection which is leading to the improvement in these patients? No, it's actually the anti-inflammatory characteristics of Augmentin that are helping these patients. Well, what if the same mechanism where Augmentin XR helps Alzheimer's patients is the primary mechanism that also helps PANDAS sufferers? What if the infection gets zapped quickly and the inflammation causing antibodies are still reeking havoc on the PANDAS brain is being kept in check by the Augmentin XR? Doesn't this scenario suggest other possible safer treatment alternatives? Ones that are not as controversial with "conventional" doctors? There are numerous antibiotics that have anti-inflammatory effects such as Emycin and Tetracyclines. These are basically older antibiotics which don't come up in conversations about causing drug resistance. Any resistance these drugs have caused over the years has already taken place. The damage is done. BUT, what about using these older antibiotics not primarily to kill infection, but in sub-antibiotic doses in an anti-inflammatory "cocktail" with an anti-inflammatory diet to keep PANDAS sufferers on a "maintenance program" with periodic checks for strep which would lead to blasts of powerful antibiotics to kill infections. What if we don't really NEED to have PANDAS kids on prophylactic antibiotics after all? Rheumatologists currently use this type of treatment for arthritis and other autoimmune disorders. Since PANDAS is likely a rheumatic type of disorder (if you believe what the latest theories are proposing) then it makes sense to treat it in a similar fashion to other autoimmune disorders. Personally, I'm not going to take that chance now that I have an opportunity to work with Dr. Latimer in Maryland in late September. If she wants to put Blake on prophylactic antibiotics then I am going to happily have the prescriptions filled at CVS. However, I am going forward with pushing for this other treatment regime over the long-term since that is what matters the most anyway. Blake told me this morning that the Concerta she is taking daily at 27mg makes it harder for her to eat since it makes her not hungry. She tells me that her close friend who takes Concerta tells her that she is suffering from depression symptoms related to Concerta. Blake says that she feels depressed all the time and that she is unattractive. She's a 70lb 12 year old with glasses and few friends. I am putting my money where my mouth is on anti-inflammation. Today she started on Eskimo dose IFOS pharmaceutical Omega 3 fish oil which is a very powerful anti-inflammatory that crosses the blood brain barrier. She told me anecdotally earlier that her depression symptoms have lifted. I gave her 7.5 grams or 10 capsules cut open and put in a strawberry/banana/milk shake with protein powder. That's a lot of fish oil, but it is not dangerous at all. There is a blood thinning effect, but nowhere near as problematic as steroids or aspirin for that matter. She is now going on a Zone Diet balanced with 40% Protein / 30% healthy fats / 30% healthy carbs or as near as we can get it. We have to give her the protein powder in Egg White powder since she doesn't eat much meat, but baby steps. I would be interested in some feedback no matter how dogmatic it is. We PANDAS parents desperately need another track we can take with "mainstream" doctors. What if Sammy (from Saving Sammy) was benefiting not as much from the Augmentin XR killing his strep, but from Augmentin XR's anti-inflammatory effects? Can we reproduce the same results with other safer treatments? The null hypothesis is that it's really the antibiotics which are keeping the strep infection at bay and not allowing antibodies to be produced in the first place. That's the primary "battle line" in the battle. The experimental hypothesis I propose is that it may be the inflammatory response that is the primary "battle line" in the PANDAS battle. If the experimental hypothesis holds any water, we can likely develop safer treatment protocols for PANDAS kids, ones that may be more acceptable to pediatricians worldwide. It's a HUGE question. There's a lot of needless suffering hanging in the balance. Dave H.
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