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pr40

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  1. Like
    pr40 got a reaction from EAMom in martial arts in place of cbt   
    Recent post on CBT made me think about this:
     
    we tried cbt and had some success. hubner's book was more helpful in forming a strategy BUT both failled in creating a habit. For habit forming -- learning how to control oneself -- martial arts were, by far, most successful.
    ds started when 6 and 1/2. he was in a flare at the time.
    after a year, we have a little jedi.
    there is no talk ever about fighting and violence. martial arts is about self-defense and, by and large, movement. if you have no experience, think of it as a form of dance choreographe.
    i would recommend it over CBT anytime
  2. Like
    pr40 got a reaction from emmalily in Update   
    way to go. I am happy for you.
  3. Like
    pr40 got a reaction from kathylr in Adult PANDAS doctor in Chicago?   
    if kovacevic does not work or in addition, you may want to find dr treating chronic fatigue syndrome. there has been a break thorugh recently in diagnosing it.
  4. Like
    pr40 got a reaction from MaryAW in First week with a child who likely has PANDAS   
    our kids had fixations -- i.e. thoughts, feelings, behaviors they could not change or put out of their mind.
    that was their first symptom. then symptoms changed, evolved sort of, and two years later we saw classical tics in ds. dd was a bit different.
    as you wait to get pandas apt, try to find strategies to cope with fixations. externalizing them, as in put that bad (reoccurring) thought in the basket and throw it away. that is dawn huebbner's advice. book title is What to Do When Your
    Brain Gets Stuck:
  5. Like
    pr40 got a reaction from fuelforall in Lightning can't strike twice right?! Please no!   
    early intervention is important. One could thing is that you know what to do, so do it. Start with ibuprofen, find a dr willing to treat, and hope for the best.
    Look at it this way, you are in a better position to help the second child.
    I am sorry about your husband. It is really important that parents are the same page. I have the same problem with my wife. It seem sometimes that I have three PANDAS around me.
  6. Like
    pr40 reacted to Mayzoo in Why does ibuprofen work?   
    The general, simplistically explanation, as best as I can state it, is this:
     
    1. Infection causes antibody production.
     
    2. Antibodies that are supposed to attack the infection instead attack the basal ganglia in the brain.
     
    3. That attack causes the inflammation of the basal ganglia.
     
    4. When the basal ganglia becomes inflamed, we see a myriad of symptoms that we call a flare.
     
     
    Mitigate the inflammation in the basal ganglia and you mitigate the flare symptoms. In most cases, as far as I am aware. there is not really an infection in the brain.
     
    The ibuprofen working, even if the tests up to now are negative, simply means you have not run the right test yet IMO (have not found the infection).
  7. Like
    pr40 got a reaction from nicklemama in Child gets worse on antibiotics and steroid burst   
    both medicines may result in initial worsening which should not last long. your question should be if over a period of time of about a month they are getting better or worse. if they are getting worse, I would still consider other causes before giving up on abx.
  8. Like
    pr40 reacted to Surfmom in New Parents: Advice From the Trenches   
    My daughter has one of the most severe and drug-resistant cases of what falls under the big umbrella of a strep-induced autoimmune disorder that left her with severe neurological and significant joint involvement. For those who don't remember us, my daughter was an exceptional student and athlete, and world's happiest and easy child to raise - until the bottom fell out two years ago. In a matter of a days she suddenly and frighteningly developed Sydenham's chorea, tics, mutism, mood swings, joint pain and swelling. aversions, delusions, rage and host of other heart-breaking symptoms. It has been a tremendously challenging road and so as an unwilling seasoned veteran here is the advice I am giving to anyone who thinks their child has PANDAS, PANS, LYME or any other unusual/frustrating unnamed condition.
     
    1. Do NOT waste time. The first time you see symptoms that do not clear up permanently after a round of antibiotics, get real help. Any of the symptoms I have described indicate your child has neurological inflammation. For the majority of kids, this could mean your child has cross-reacting antibodies, that are attacking your child's healthy tissues. For many kids this could involve brain, heart or joint problems so you absolutely need to rule out any potential damage, especially heart involvement (this was the one potential result our daughter had). The longer you go, the more damage that can result and the harder it will be to treat. This means:
     
    2. Your child has a PHYSICAL disease with psychiatric symptoms resulting from inflammation so you need the right specialists. If your child has recurrent or ongoing flares after antibiotic treatment, and you are only seeing a psychiatrist or PANDAS doctor who has not done a full spectrum of physical diagnostics (MRI, heart ultrasound, tests for Lyme, allergies, inflammatory markers, titers, etc.) then ask your pediatrician for a pediatric neurologist referral. Remember this is PHYSICAL. I can't emphasize this enough: If you can, go see a neurologist and an immunologist.
     
    3. It's not in a name, so don't get stuck with a label. I know we all want that relief/satisfaction of saying my child has "PANDAS" or some other condition, but that can predispose physicians to start treating before a real diagnosis and plan is put forth. For example, we ran off immediately to USF for PANDAS evaluation, at which they gave us some surveys, talked to us and then tossed us some antibiotics with a diagnosis of PANDAS. Not one physical diagnostic test was done and we were foolish to go along with that. In time, they would have ramped up to IVIG, etc....but I would never have known that my daughter could have had heart damage. For those wanting a name., honestly, ( For the math-minded I think we are talking about a spectrum of autoimmune diseases that could be plotted on a coordinate plane of X and symptoms on Y, to find that our kids are scattered all over the place) I think there are as many names for these diseases as there are kids. Just call it, "Insert your child's name here" disease. I am kidding - but also not. The many presentations of these diseases explain why they sound akin to others (like Lupus) and yet different when we talk to each other here. Also, never mention diagnosis to insurance providers. Many are looking for reasons to reject claims so let your doctors and insurance companies play the coding game.
     
    4. Take meticulous notes regarding symptoms.Take pictures and video even at bad times. Trust me, you will forget. Look for subtle things like handwriting and appetite changes, sleeping changes, expression of unusual ideas, reduced speech. When first met our neurologist, I came in not with a disease name but a table of symptoms, date of onset, severity and frequency. I wanted them to diagnose without predisposition.
    5. Don't worry about the bandaids - yet. I know a lot of us sweat everything from glutens, to certain amino acids to micronutrients. Until you rule out allergies, known genetic deficiencies....don't lie awake at night and wonder whether or not you are missing some esoteric piece of the puzzle. Feed your child well, make sure they are getting plenty of vitamin D (low is usually indicative of a chronic inflammatory process), and as many nutrients as they can from real food. You are a good parent, and while the little things will help along with a healthy lifestyle, there is no magic pill. Proper diagnostics will eliminate a lot of concern about allergies and root causes so you don't waste a fortune in time and money trying this and that. We are desperate and vulnerable so read everything with a critical eye.
     
    6. Trust your gut and assert yourself. I went to FOUR doctors and had three ER visits with my daughter, shaking my head and respectfully telling them we were moving on when they told me she was probably just depressed. WRONG. (Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health).
     
    7. Your child is not your child. There is no way that sweet baby of yours would ever do the things he/she is doing if he/she was healthy. Easier said than done - but do not take it personally. That said, reasonable consequences apply. If your child is having severe outbursts, you have to remind yourself: THIS IS THE DISEASE. Say it like a mantra if you have to.
     
    8. Get healthy and fit. I have had to care for my daughter for two years 24/7. Most of you will not be like that. It's going to try your body, mind and spirit. It's going to be hard so you need to be battle prepared. At times, you are going to be scared, angry, tired, frustrated and lonely so you are going to need to be at your best like no other time in your life. Get sleep and don't worry if there are fingerprints on the appliances and the car needs vacuuming. My family has learned that no matter what, I am taking an hour a day to run or surf.
     
    9. Get brave and tough.. People closest to you are going to hurt your feelings, and give you unwanted advice. Head them off at the pass and tell them that you are on top of all the research and protocols (you need to be), that this is going to be stressful, that you are so grateful for their support, but that the things you can't have them do include _______. For me, it was advice on how to parent...like when my daughter would be defiant, or when I chose to keep her out of the public eye when her tics and chorea were severe. Doing that up front will save all of you a lot of misunderstandings down the road. The "Loving but Uninformed" in your life will give you some bizarre advice at times; take it in the spirit in which they meant it. At the same time, get soft. For me, this meant learning to accept help from other people. I have always prided myself in being able to be self-reliant, being able to do it all, but with this spectrum of disease - forget it. I have learned that letting people help is not a sign of weakness, but an acceptance of kindness that can really make a difference. The people around you who really care want to help. Let them.
     
    10. Slow down the clock. You aren't going to get it all done. At times you are going to be late to school. Sometimes you won't get to a place at all. You might even miss a major life event like a close friend's wedding, or as it is in my case...your chid might even miss a year of school. It will work out.
     
    11. Read it all, get informed, stay on top of it...and then walk away at times. You cannot live and breathe this everyday without becoming obsessed in an unhealthy way. My daughter loathes it that I pick up on every tic, and my husband got tired of my talking through the study results in the third standard deviation for the sample size of 12 for the methylation of a certain gene expression (whoa, sexy AND romantic) when we crawled into bed at night. (The main reason I come and go from this website .)
     
    12. Go out at a minimum of twice a month for the evening. The only rule: Thou shall not talk about thy child or thy child's disease. Also keep something out there a month or two away to look forward to...beach, trip to parents, buying a new sofa, camping trip. Finally, don't forget the healthy siblings and your SO. As much of a nut as I am about healthy eating, sometimes a little love and acknowledgement is as easy as a box of walnut brownies that can be mixed and tossed in the oven in two minutes...with a PostIt note alongside.
     
    After two years of IVIG, Cellcept, Rixtuximab and Cytoxan, we are finally knocking down the world's most persistent immune system and our daughter is slowly getting better. Chorea is gone, tics gone, OCD gone, moods better, tremors gone, ataxia gone, mutism gone, catatonia gone, sleep patterns good, aversions gone, eating well, engaging with the family, smiling, laughing and has some quality of life.
     
    Long story short: Treat physically and if a child like ours (who is probably one of a handful of the most profound expressions ever on this disease spectrum) can get fully back on the happy and healthy track - yours will too.
     
    I am not editing. I used to. I don't anymore. See? LOL
     
    (Ok, confession... I came back and read this AM, and gently tweaked the typos).
     
    A thousand blessings your way!
  9. Like
    pr40 got a reaction from MissionMama in Probiotic help....   
    it really depends what you want to achieve. Align is recommended when you want to rebuild stomach flora. Celiacs are supposed to use it every day.
    we use three different on rotating basis, including Culturelle, bifidus, and Puritan's Pride Acidophiles.
  10. Like
    pr40 got a reaction from KLJ in PANDAS Dr. Recommendation on east coast   
    if he is her patient, while you look for other options, would showing up in her office and going as far as threatening legal action help? I would do it without second thoughts, politely but firmly. you really don't have that many other options.
  11. Like
    pr40 got a reaction from Hrosenkrantz in This is a family affliction...ugh   
    you ought to consider the seriousness of the effect that your child's condition has on you and even perhaps the possibility that you too have a form of PANDAS/Pans.
    in our family, all four of us have psychiatric and autoimmune issues and are trying to help each according to what they need.
    i do not, however, agree with your husband except in the sense that your pandas child should have consequences and should be allowed but limited screen time after all other responsibilities have been met. limits should be clear.
  12. Like
    pr40 got a reaction from BeeRae22 in your thoughts   
    "is it possible to return to 100% without future flareups?"
     
    perhaps. only time will tell. I would want to say unlikely since you are witnessing an autoimmune response. the fact that ibuprofen does wonders is an indication. autoimmuninity is more like a condition than like a one time thing or state.
     
    by the way, how do you know this is a flu?
    in your place, I would have a plan B in case exacerbation returns. i would do all blood tests etc, contact a Pandas/Pans dr, and, in general, begin educating yourself what this condition is.
  13. Like
    pr40 got a reaction from BeeRae22 in Sudden onset of TICs/OCD behavior   
    I try to answer you questions.
    How long from the initial acute onset of the symptoms of PANDAS, PANS, PITAND, or CANS did you start treatment? Did the treatment include antibiotics? How was your success in eliminating the symptoms? To what extent did your child return to normal? What time frame did this take?
    1. sooner the better. with dd 12 months later, with ds right away. guess which one is doing better?
    2. yes. dd and ds were bad but not sever cases. so abx was the treatment of choice. ds also had steroid burst. both are on 2 diff abx
    3. gradual, very gradual. exacerbations are milder and shorter. more and more normal days, after 1 year on abx
    4. we changed our idea of normal. these are auto-immune conditions. with them you are never normal. sometimes, when one symptom stops, another begins and you may not really know
    5. maintaining good quality of life is our goal. it requires work, special diet, supplements. etc. i'd be surprised if all that can go away and we can just be "normal".
  14. Like
    pr40 got a reaction from BeeRae22 in Tired of Therapy   
    this is what we did: we started CBT and went for several months. Decided to stop then because we did not see improvement, was too expensive and difficult to get to and, MOST IMPORTANTLY, because we figured out how we could incorporate CBT into what we do at home. The idea was to give dd strategies to cope when she is able to do that. For us that strategy is quite simple since you dd gets fixated on things and "stuck". Getting unstack requires changing her mind set, which she has learned to do by taking a moment to relax and breath deeply, by us giving her a time out and compelling her to take a moment. We also try to literally stop her actions when she gets, for the lack of a better word, hysterical.
    So, try to identify if there is one thing that defines your child's exacerbations.
    With skin picking, I am not sure what to suggest. it could be just one of the repetitive behaviors that will pass. Our dd goes back to picking her leap whenever she is in an exacerbation. when she is fine, the habit disappears. Ibuprofen 3x a day helps with this most of the time
  15. Like
    pr40 got a reaction from BeeRae22 in Spoiled rotten   
    major issue here too. comes and goes. it is, definitely, a symptom like ocd and you should approach it as such. that is, you will have only minimal direct effect but perhaps can teach her strategies. it is just that she will not see any reason to change her behavior. it is not like she is washing her hands fifty times. so, we devised reward system if she is nice to her brother when it is difficult to be nice, hoping that over time -- over a long period of time -- this would become new behavior.
    in general, i find it easier to stop the behavior if I set the rules in advance. anticipate a potential conflict and try to set the rules like no counting sprinkles. we also find that quick time outs help her change her mind set. time outs are times for her to relax, as we explain to her.
  16. Like
    pr40 got a reaction from hkp901 in Natural antibiotics; Berberine   
    abx are given as a prophylactic. but their more important effect seems to be anti-inflammatory. i don't know if you get that with substitutes
  17. Like
    pr40 got a reaction from nicklemama in Ideas for dealing with separation anxiety?   
    separation anxiety is a symptom and I would say that your child did not improve as much as you think she did.
    in my experience, cbt is not helpful at the stage you describe.
    in your place, I would ask not what should I do about the anxiety? but what treatment is she going to respond to? after she gets better, her anxiety should become more manageable and CBT might help at that point.
    My suggestion would be to change the lifestyle, diet, etc. start supplements, start two abx, and/or a steroid burst.
  18. Like
    pr40 got a reaction from MomWithOCDSon in depression caused by infection? -- science waking up   
    from todays NYT
    http://op-talk.blogs.nytimes.com/2014/11/26/what-if-were-wrong-about-depression/?_r=0
     
  19. Like
    pr40 got a reaction from EAMom in ASOT results normal does that rule out PANDAS?   
    The flow chart looks great I could show it to the paed. but I guess what I should really do is find a PANDAS or PANS specialist in the UK but I have no idea how to go about this. Any advice?
    yes -- there are several people on the list. do a search of the forum and make a post with that question in the heading to catch their attention.
  20. Like
    pr40 got a reaction from qannie47 in PANS without tics or OCD?   
    i would rephrase your question, does OCD come in the version you describe?
    or, in yet another way, are you sure you have identified all the symptoms?
     
    is the child slow? does she get lost getting dressed? is she particular with how she gets dressed?
    is she insisting that things be done this or that way? can she compromise?
    does she have memory problems?
    hording?
    (our dd had all these symptoms at the beginning of her PANDAS plus RLS.)
     
    one has to observe child very closely and to know what to look for. ocd comes in many flavors.
    look for compulsions and fixations.
  21. Like
    pr40 got a reaction from EAMom in PANS without tics or OCD?   
    i would rephrase your question, does OCD come in the version you describe?
    or, in yet another way, are you sure you have identified all the symptoms?
     
    is the child slow? does she get lost getting dressed? is she particular with how she gets dressed?
    is she insisting that things be done this or that way? can she compromise?
    does she have memory problems?
    hording?
    (our dd had all these symptoms at the beginning of her PANDAS plus RLS.)
     
    one has to observe child very closely and to know what to look for. ocd comes in many flavors.
    look for compulsions and fixations.
  22. Like
    pr40 got a reaction from EAMom in Valterex as cure -- any first hand stories?   
    hrosenkrantz -- yes, I think that to be the case that valtrex does the same thing that abx do with bacteria and not that it is a mood stabilizer as the author of the article thinks. but I have only this opinion, no proof.
  23. Like
    pr40 got a reaction from EAMom in What does this quote mean?   
    indeed, make sure to ask what treatment they provide BEFORE you go in.
  24. Like
    pr40 got a reaction from SSS in tics and antibiotics   
    this is a report of what we personally noticed about our ds6 tics and antibiotics. Someone on the forum suggested that taking right abx will help with tics, and, in our case, this was correct.
     
    short history: we stopped all abx in March, by early June, ds developed new tics with mouth and arms. they were very frequent and their episodes appeared throughout the day.
     
    In June, we reintroduced prophylactic Augmentin with some effect. In early September we started Ceftin 250mgx2 day, as well as Azithromycin 100mgx1 day. By mid September, both mouth and arm tics were almost completely gone. In mid September he started with a bad cold. We saw some mild tics come back after the first week of that cold. By, now, the second week, though he still has symptoms of a cold, all tics are again gone.
     
    Also in early September we introduced ferrous sulfate (iron) but we did not change anything else.
     
    I cannot say if abx help everyone with tics, only that they helped our son.
     
  25. Like
    pr40 got a reaction from momslove in add meds or just stop them all...   
    just on the impulse to stop all medicine: it is disappointing that all the medicine you kid is taking is not helping deal with depression. When we did it, I know now, we did it out of anger and despair, which is not a very good reason. If you don't have a medically sound theory why you want to stop like that and what other strategy you want to implement, don't do it.
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