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dasu

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Everything posted by dasu

  1. I have two PANDAS kids summarized in my sig. We went through a very difficult flare last winter, and they did IVIG and 3 months of Clindmycin and showed some improvement. (Although unfortunately strep has been circulating and my daughter has been set back) They currently have some other symptoms too that aren't resolving. They both have markedly lower energy and stamina. If I compare them to kids on their sports teams they get tired more easily and cannot handle the heat as well. This may not make sense but they are also impulsive and hyperactive. They often have disproportionate reaction to negative stimuli, for example a simple trip to the store can generate a lot of complaints. A normal daily rhythm and getting them to follow basic rules is difficult to achieve. My daughter seems to be set back in the last month perhaps from the strep exposure, although we saw no sign of illness. Hers appetite is diminished, she often feels nauseous, and has lost weight. She has suffered from occasional rages which we cannot find a trigger. One suspicion is food, perhaps bacon or eggs. And finally we have noticed some pica, eating paper, although seems to come on during stress. They are on the following supplements: natural thyroid, olive leaf, oil of oregano, krill oil, fish oil, hydroxycobalmin and molybdenum (once a week). We were finally able to do bood tests for some things. We ran the Igenex on my son only (only so much $) and it came back negative for all. A standard Lymes test was done also ang came back negative. HHV6 was drawn but not able to be tested, so we will have to re-test. EBV came back in range, but showed they had had EBV in the past. The mycoplasma is the only test that showed marginal - son's IGM was 0.18 IGG was 0.88, and my daughter's IGM was 0.34 and IGG was 0.92. Does anyone have any thoughts? We were so hopeful that these tests would show us what is driving the PANDAS and nothing has popped out.
  2. EDITED A couple must-read links, one thats more wordy (but contains other gems e.g. infectious agents changing behavior) and another thats concise.
  3. Ugh...we have dealth with this very same thing too, with kids the same age. Aggressive behavior, hitting, screaming and worse saying violent and gruesome things, and also inappropriate sexual behavior. We had to remove anything that could be a weapon, including knives, silverware, candles, belts, bats, balls, and any solid toy. Sometimes the behavior was an actual attempt to harm other times it was more of an attempt to scare. One of the first signs of PANDAS onset for my kids is trouble with discipline, both the carrot and stick. Incentives are ignored. Discipline is ignored. The kids are simply unable to control much of their behavior; if they could, they would. That said, we have found that, during a flare, behavior is partly a function of environment. And we could take steps to control environment. We had to remove many stressors - asking kids to do schoolwork, housework etc, going out to stores, and sometimes not even going out of the house period. They watched movies and played video games constantly. There are times that is not enough, and they need meds. I hated to do it but we used Risperdal when things got really ugly. They ate constantly and were somewhat less aggressive. But it sure beat restraining my son for hours on end.
  4. Every day is a new day with PANDAS. We dont suffer from PTSD for no reason.
  5. What rife machine did you end up using. I read up on the Rife machine a while back, and it was a swamp of conflicting information. Manufacturers each claimed their machine was effective. Some reported health risks due to RF exposure. The frequency list was said to be suspect. There is also the Hulda Clark zapper. There seemed to be less controversy on this, its ineffective. In the end I could not wade through all of the controversy to make any decision.
  6. Sorry to hear quannie. I can say this - that we are operating under the belief that untreated infections are the primary driver for our kids physical and psychological issues. We have yet to determine what that infection is though. Both of our kids went into a flare unlike any other flare that started in October 2014 and is slowly abating post IVIG. From around March of 2015 they seemed to show marked improvement but it was erratic, Good days and bad days, much like you describe with your son. That said we noticed a decline in both about two weeks ago, and then were informed that some kids on their sports team had strep. We are wondering if the variable expression in symptoms is driven by exposure. There are also other drivers beyond infections - mold, allergies, foods. My daughter had a complete breakdown after a Costco trip, after trying out all of their free samples (of course we have no idea which sample was the culprit or if it was just a co-incidence).
  7. Nickelmama, thanks for the suggestion. I ordered the book.
  8. Question - how long does a flare to exposure last (without getting sick themselves?) Strep has been circulating through the schools but our kids play sports and have been exposed. We notice an uptick in OCD, ODD etc. I keep hearing about another concept as well from other PANDAS parents - PANDAS kids get sick but either dont show it or the disease somehow progresses at a slower pace. I havent seen any evidence of this from literature.
  9. Did you read http://pandasnetwork.org/yourstory/your-experiences/ocd/ ? We missed a few things on this list with my son, perhaps like you, looking for hand washing and counting.
  10. http://www.nature.com/ncomms/2015/150512/ncomms8000/full/ncomms8000.html We have noticed that PANDAS symptoms for our kids tend to be worse during winter months. While I thought this was primarily due to exposure to infections and allergies, this could be seasonal.
  11. I think you make a good point - bad/good behavior is a downward/virtuous cycle. When kids think that they wont be able to control their emotions brings more fears and low self-worth. Conversely when they build up their esteem and know that they can handle situations that frees them up to enjoy life and ride out negative emotions. Its hard to differentiate where PANDAS stops and choice starts, and its an ever evolving line coming into and out of a flare.
  12. Thank you for the suggestion. We sat in on a martial arts class a couple months ago and the kids didn't like all of the yelling. It may be time to re-visit as they are doing better now. We have heard that OCD can be useful quality when harnessed. Said another way our kids need to find an activity that is engaging, productive, non-destructive. We are still on the hunt for that, which is probably even harder as they are 6 & 7. In our last flare it was 24/7 games on the ipad, that fails the productive test. They can get into math and numbers, so thats been useful. One family we know with PANDAS does music and music composition; but my kids arent so interested in music as yet. They are getting into soccer and baseball, which has been good.
  13. Congrats! Thank you for taking some time to document your progress. My kids - only 6 and 7 - know how limiting PANDAS can be and worry how limiting it can be to their future. We want them to live confidently without the fear PANDAS brings so when they ask the "what ifs" we try to gloss over things and talk about all the great treatments and how when one fails another one can be used. It must be apparent to them as they then ask "what happens if IVIG, PEX, Rituximab fail, whats next?". So its nice as a parent to have relate real stories of how kids with PANDAS can grow up and live a full and rich life.
  14. We homeschool and are planning on schooling through the summer as the kids had a rough winter and were unable to do any school for three months. So we will see how it goes. During a full on flare our PANDAS kids are unworkable, unable to do any activity, schooling sport or even many basic tasks. So there is a wide spectrum in abilities between sickness and health. The challenge of a parent is to read and then continually adapt to where they are at any given day or hour. But generally speaking, in 'tween times they need structure and tasking which is a job in and of itself. Us parents get worn out from driving them, keeping the PANDAS thoughts away. This may be what your daughter finds so attractive about school.
  15. pr40 thanks for sharing. I did not expect that - do you attribute that to unresolved Lyme or other?
  16. What abx? We saw dramatic change after 5 days on Rifampin with my daughter. There was no recognizable difference with my son, but he was prescribed different abx (cannot remember now).
  17. Good to hear. Ive followed your posts and you have suffered through so much, with very little hope. You persevered, and now have something to act on. From my perspective we are persevering through our kids symptoms now trying to figure out how to treat as the standard antibiotics/steroids/IVIG doesn't appear to be working and the standard non-Igenex lymes tests have come back negative. So I was piqued when you stated that you had a CT and that the cause was likely Lymes or Lupus. I did not know Lymes could do that. Is a CT then recommended for unresolvable neuro symptoms?
  18. Researchers have found antibiotic resistant bacteria downwind from cattle feed lots. Read more here http://ehp.niehs.nih.gov/1408555
  19. Well they failed here - http://www.zerohedge.com/news/2015-04-05/chinese-taxi-drivers-attempt-mass-suicide-weed-killer-no-one-dies . We live in a rural area a mix between pasture farms and the now standard corn/soybean rotation farms. The farm across the road sprayed what I am guessing was glyphosate for the johnson grass infiltrating the corn from a helicopter last year. The kids walked over to look at the helicopter flying so low (atypical as most farms around here clearance tractors) and got a nice dose from an inattentive pilot. They have had PANDAS for years now, but I do wonder what change in the environment triggers this as there is no family history.
  20. Absolutely! Cooperate, yes; comply, no. Most of the details in the paragraph make sense (why got to ANY specialist if you just pick cafeteria style what to do and what not to do) but the larger issue as I see it is what directives are they giving patients? LLMDs are making the diagnosis often on a largely clinical basis. Treatment can last for years and follows many different paths. People who visit them are desperate for answers and hope. Mainstream medicine and law has put a lot of pressure of alternative medicine, making it hard to find alternative practioners and information about them. When you put all of this together, the field is ripe for quacks and for predators. I am working on finding LLMD for my kids. My dad had Lymes which was caught immediately (he got the bulls eye rash) but was not properly treated with his primary care doc resulting in peripheral neuropath months afterwards. So he visited another specialist in PA who made him wait for hours in his office, then put him through vague tests without revealing results. The treatment went on for months, out of pocket. If he would have gone on for years and challenged the diagnosis or care he received he would have got the legal letter. He got no better, just poorer.
  21. We are also testing for Lyme & co-infections via Igenex next week. We arent sure of which LLMD to see. Is McCabe strictly herbal and if so does she use the Buehner protocol? Why are the Lyme docs in DC? I don't mean to complain but the drive into DC is not convenient.
  22. I have two PANDAS kids and, as a family, we struggle with their behavior and interactions with us and eachother. During flares they exhibit a lot of anxiety, impulsivity, hyperactivity, fatigue, anger, ODD, OCD, etc. My son also has a few minor tics so I decided to read up on tics and then Tourettes http://www.tsa-usa.org/Education/UnderstandingTSBehaviors.htm. Specifically, For those with dysinhibition, a sign saying “Don’t Touch, Wet Paint” is an invitation to touch the paint. Obeying the sign means inhibiting the very behavior suggested by the sign. Inhibiting behaviors is challenging for all children, but presents a far greater challenge for students with TS due to their impulsivity and inconsistent ability to apply their mental brakes. This is not purposeful disobedience, but the inconsistent dysfunction of a brain affected by the chemical imbalances that cause TS. One thing that I found interesting was their description of dyshibition and it seems fitting particularly for my son. We have noticed that when given a command he does the opposite. "Dont touch that wire" is an invitation to touch. There is also a range of things we avoid because the thoughts keep on bouncing around both in their own heads, or worse between the two of them, for example body fat and obesity, private parts. The document mentions dysinhibition strategies and doesnt really cover what strategies one can use. I searched latitudes and found nothing. Is anyone here familiar with what strategies can be employed to help them solve the problem? We currently just try not to give rules (e.g. just hide the bottle of spray lysol rather than tell them not to touch), try the power of distraction or just say no (many many times...)
  23. I assume your son has been treated for Lymes and Anaplasma? (BTW, was this why you switched from Dr L to Dr B?) We are as lost as you are, possibly more so. We have been in a flare thats lasted months, and although somewhat better, they are still struggling. In the past we let flares slide for way too long. Here is the typical course of a flare: starts out with minor tics (spit-centered) and urinary issues which can run a month or two, then OCD and finally shortly there after depression, aggression, confusion, verbal outbursts. We think that some of these flares may be cumulative in nature - an initial trigger, then exposure to another illness etc. The lesson here, at least for our kids, is to call early, and adjust antibiotics etc. Have you tried allergy meds? We have noticed fall and March to be two peak months for symptoms in the past.
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