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Hierge

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  1. This happened to my daughter at 8 years old. We got her to the hospital pretty quickly when similar symptoms appeared. She was admitted and given intervenous antibiotics. I believe to this day that the early administration of antibiotics on the first episode of PANDAS saved us from her being an Exorcist child. Get the little guy to the doc and kill this infection immediately. It will be a lot easier later on when it hits again. You may need to see an PANDAS doctor and get him on prophylactic antibiotics. It will save you a world of grief in the long run.
  2. I only give my 12yr old child Omapure IFOS certified pharmaceutical grade fish oil which sells for about 20 bucks for a bottle of 120 capsules. Until I got her on prophylactic antibiotics she was on a 7 gram EPA/DHA brain shake per day. Unless the fish oil you buy is IFOS certified you cannot know if it is pure from mercury and contains at least 60% EPA/DHA. I purchase Omapure in boxes of ten bottles for $20 per 120 capsules. Most fish oil you buy including Dr. Sears (not Dr. Barry Sears from the OmegaRX) contains the sewer of the sea. Hate to say it, but it's true. Mercury and PCB's are not good for kids. Feds don't regulate it. I personally take 7.5 grams of EPA/DHA molecularly distilled Omapure per day and have done so for two years. It is very good for PANDAS kids. Pick up a copy of Dr. BARRY Sears book OmegaRX and you will understand the science behind dosage etc. You can get used copies on Amazon for three dollars.
  3. I'm not a doctor, but Predisoine is supposed to temporarily knock out PANDAS in all kids. So, you basically know if it's an autoimmune deal. Cant continue it due to side effects. My 12 year old responded well and was pronounced "cured" by Dr. L after both two months later.
  4. For sinus issues, you might benefit from Neti pot and oil of oregano. People swear by these methods.
  5. Holy guacamole!! I suspected that this might be a bugaboo, but perhaps we may have a causative factor here? Maybe these friggin shots are causing many more cases of PANDAS than we know. What if they were the primary factor?
  6. I was reading a post where a vaccine caused PANDAS to come back in a "cured" child. I am now concerned about Flu shots. What's the general feeling about giving PANDAS diagnosed kids flu shots? I am inclined to not risk them due to low effacacy and other obvious reasons. (Update) If you are a parent of a child with PANDAS with non-custodial parental rights... take notice. Apparently, after writing this post, I found out that Blake's mom took "cured" daughter as of 12/01/10 to get her flu shot on 12/18. Symptoms are now back. I specifically asked Dr. L about this and seem to remember she said no to flu shots. Mom says she has an email from Dr. L which says it's OK to have flu shot. I'm so upset right now. She gained 20 lbs and seemed to be doing so well. I spent four years and fights with her mother to get this dealt with.
  7. The National Institute of Mental Health in Maryland issued a statement declaring PANDAS real. Disease caused mental disorders are now on the table again after a century of Freudian dominated thinking. PANDAS will be renamed soon and the doctors from Johns Hopkins who are "turncoats" to the new paradigm get to name it. This is described as a Vatican type of announcement. The reason it is has been so hard to declare real is because it's largely circumstancial to date. People have known for a century or more that strep throats are associated with OCD, tics, heart problems, rheumatism and other autoimmune disorders. There was just no direct proof. Dr. Swedo has come the closest in my opinion by measuring the volume of certain brain structures pre and post strep infection. Other people know a lot more than I do, but there are also other immune system indicators. The science behind this just hasn't caught up to the circumstantial proof. It's not entirely uncommon for drug companies to not know how drugs work, so it follows that we don't have to know how it works to use it. Aspirin finally was figured out after many decades of use.
  8. I had to knock this out for myself and I did it without pills. I got a Neti Pot for fifteen bucks and irrigated my sinuses each night for a week. I also started using Oil of Oregano concentrate diluted for sublingual and breathing in application. I didn't do the breathing the vapor procedure, but it will kill any infection in the sinus. Sublingual should also kill any strep in the throat. Oil of Oregano tastes really bad though. It's more concentrated than the oregano you are used to on Pizza. You can find several different guides through google on getting rid of sinus infections. They work well in my experience. Up to a third of blocked sinuses are due to infection not allergies. Noses carry nasty stuff. I also used Bacitracin on a cue tip up the nostrils before bed each night which killed the strep up there too. You will find the bacitracin remedy online as well. Neti + Oil of Oregano + Bacitracin will kill any sinus infection and keep it away.
  9. This all sounds reasonable. Drug companies have to have the economics behind their marketing budgets. PANDAS is a rare disorder, but the kids are going to be long-term users right? Those are the meds they put the money behind right? Chlosterol is long term, cialis is long term, allergy meds are long term. This one fits too, but can we prod them to review the spread sheets and have their marketing dept. take a look at the potential market factors that might drive a potential campaign? Perhaps there are other "economies of scale" where other disorders could be grouped in with OCD. If it's an avenue of progression, it seems to be worth the effort to find out.
  10. There are always going to be concerns about what's the right treatment. This autoimmune disorder is triggered by Strep. Strep is treated with Augmentin XR. Not every person responds to Augmentin XR for strep throats. So should we stop treating strep throats with Augmentin XR because not all kids are fixed with it? I think it's ok to get this treatment out there to adress Strep without too many problems. If it doesn't work, then by all means get better treatments. Until then, let's try and help the 90 percent untreated PANDAS children on drugs like Augmentin XR to see if that helps like it did with my daughter. It's a safe drug and has been tested for decades.
  11. Over the last two months and two appts with Dr. L in Bethesda she emphatically said that the "Vatican" has spoken at NIMH and Strep is officially linked to OCD, with emphasis on PANDAS. The disorder PANDAS is due to be renamed in accordance with two Johns Hopkins doctors (former opponents.) These massively influential doctors under the crushing weight of evidence have changed their positions 180 degrees allowing the dam to break for the paradigm shift to infectious agent originated mental disorders. Augmentin XR is one of the primary treatments for PANDAS right now and after watching commercials every single evening for allergy drugs, birth control drugs, chloresterol drugs and the (ahem) Cialis class drugs, it is clear that drug companies are marketing the heck out of drugs. Augmentin XR is well tested, profitable, and is very popular. It would seem logical that Glaxo might want to put some cash into marketing this trusty old drug for the new OCD fix. Does it make sense to contact them in some capacity through their board or other vector to shake the bushes on this? I'd personally like to see their drug reps pushing Augmentin XR in pediatrician offices this spring for strep related OCD as a long-term solution. That'd get a lot of parents on this group covered for their kids through their pediatricians without having to get a PANDAS doctor.
  12. Laure, I let my little girl suffer for four years with PANDAS. When I finally got her the treatment she needed on October 28, I cried and apologized to her for not fighting harder to get to the right doctor. My girl has PANDAS, and if your daughter has PANDAS she can get a lot better with the right treatment.
  13. It's sad Sophie is sick with strep. She's not on antibiotics then full-time to keep the strep away then? I hope she gets her wish. I will pray for her.
  14. Fixit, thanks for the well wishes. Blake had some weird facial tics before treatment. I am a man and somehow men are less observant than women at facial tics. Dr. L told me she is one of the top experts on reading facial tics. What that means overall I don't know, but in our case she said that she watched my daughter for an hour and a half and diagnosed PANDAS with 100 percent certainty with that being a major factor. Sudden onset to the day, sore throat right before, titers out of whack, handrwriting going completely screwball... She said it wasn't even a close case. She also judges facial expressions and reactions in parents. She says she is getting good enough to make the diagnosis almost immediately just from reading the agony of the mother. Blake is essentially "cured" according to Dr. L. Tics are at zero. Finger movements at zero. Smile on the newly filled out little face. Good mood. It's almost a miracle. Sooooo Happy for your dd and your family!!! Thank you for posting how she summed up your visit on your dd particularly and the little tid bit above.. i just bawled my eyes out for 15 minutes....happiness and anger out of the 7 years i've been fighting this off and on.... Not to be semantical...do you think that statement was meant to include tics...you may not know...just asking as mom of a ticcer
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