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qannie47

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  1. Like
    qannie47 got a reaction from lovemylittleguy in Co-Morbid Discoveries with Pandas DS   
    5 days no tantrums. Calm and happy. Dont want to jinx it but doc said if its going to work we would see results in a day or two.
  2. Like
    qannie47 got a reaction from MomWithOCDSon in Co-Morbid Discoveries with Pandas DS   
    5 days no tantrums. Calm and happy. Dont want to jinx it but doc said if its going to work we would see results in a day or two.
  3. Like
    qannie47 got a reaction from tj21 in Prophylaxis.... to continue, or not?...   
    I vote no. My son flared after free for 18months. He was on abx. My point why chance it? And why does your child have to flare in order to prove something to doc!!!
    That being said, summer months are probably best time for a break. Maybe supplement with turmeric for antiinflammatory. Fall time I would go back to abx though. My son has been in a flare since dec..ugh.So I have a strong reaction to compromising a good run. Good news he had second ivig six weeks ago and am seeing improvement. Dr k says his exp shows he has rarely had to do a third.
  4. Like
    qannie47 got a reaction from tj21 in INTRUSIVE THOUGHTS?   
    With OCD thoughts I have a friend who has yielded great results using CBT. Her son has Pandas.
  5. Like
    qannie47 got a reaction from fuelforall in Seeing Dr. K in Chicago on Monday   
    I suggest emailing him all those things. I did that before our first visit and I felt it made that first visit more productive.
  6. Like
    qannie47 got a reaction from tj21 in Insurance Appeal for IVIG (UHC PPO)   
    Good for you! Best of luck!
     
    Regards,
    Q
  7. Like
    qannie47 got a reaction from tj21 in Autoimmune Encephalitis   
    Hrosenkrantz: No, he did not come to my house. When the first peer review came back as non-supportive/no coverage, I wrote a long letter describing my son's symptoms and recovery with IVIG, abx, steroids...I took exception to the fact that somebody so far removed could decide how to treat my son. Somehow, miraculously, with my clinical appeal, laced with a little "shame on you", they re-opened the case a gave me full boat for coverage, past and future, along with a written vindication for what we have been dealing with. I would have at least accepted his initial decision HAD he come to my house.
     
    ibcdwbc: my son's ANA and dnase was only slightly elevated, and within normal range...but I wondered if the fact that it was elevated at all spoke to something.
  8. Like
    qannie47 got a reaction from SSS in I thought it was over   
    My guy is 9. I spoke with the guy whom is flooding the internet with testimonies....My own personal take was that his story was too good to be true. When I asked him some harder questions, he got angry and defensive....That being said, I do not have any personal exprience witn essential oils so I can not weigh in.
  9. Like
    qannie47 got a reaction from dasu in She's running me ragged.   
    Keep in mind that if this is Pandas related, your child has lost her ability to be reasoned with. She has lost cognitive assessibility. When my child was in the thickest grips of a flare, there was NOTHING I could do. Nothing.
     
    I switched my goal from trying extract reason or desired behavior to "anti-stress" therapy. Many times this worked.
     
    Joint compression therapy worked well: Just below each joint, for example the knee, slightly push the joint in and out over and over, about 10 times. Move onto the wrists, each finger, ankle. I also would gently pull on each finger to create a stretching feel. I would do this with his arms and legs: holding at the ankle (imagine the stretch going all the way up to the hip) With the arms: create a stretching feel by holding onto the wrist and pulling with constant tension. They should feel the pull all the way up to their shoulder. Do this whole body therapy for ten minute increments. Sometimes I would have to do it 3 times in a row....
     
    I also did back massages with aroma therapy. Hot baths. Think DESTRESS.
     
    With my son, I believe that the dopamine surge was sending him into a fight/flight mode and these kinds of things helped. It would often result in him feeling drowsy from the relief....
  10. Like
    qannie47 reacted to mommybee in Your input please   
    I have two thoughts. The first is whether this could this be a focus problem. Attentional difficulties are a symptom of encephalitis. The second is about auditory processing. When the subject matter being discussed is complex (i.e. a lecture about involving new information in the classroom, or about something socially challenging), people with auditory processing difficulties often need more time to process the incoming auditory information. How old is your daughter? HIgh school can be challenging for bright students who have unidentified auditory processing glitches. Fine tuned neuropsych testing may be indicated.
  11. Like
    qannie47 got a reaction from BeeRae22 in She's running me ragged.   
    Keep in mind that if this is Pandas related, your child has lost her ability to be reasoned with. She has lost cognitive assessibility. When my child was in the thickest grips of a flare, there was NOTHING I could do. Nothing.
     
    I switched my goal from trying extract reason or desired behavior to "anti-stress" therapy. Many times this worked.
     
    Joint compression therapy worked well: Just below each joint, for example the knee, slightly push the joint in and out over and over, about 10 times. Move onto the wrists, each finger, ankle. I also would gently pull on each finger to create a stretching feel. I would do this with his arms and legs: holding at the ankle (imagine the stretch going all the way up to the hip) With the arms: create a stretching feel by holding onto the wrist and pulling with constant tension. They should feel the pull all the way up to their shoulder. Do this whole body therapy for ten minute increments. Sometimes I would have to do it 3 times in a row....
     
    I also did back massages with aroma therapy. Hot baths. Think DESTRESS.
     
    With my son, I believe that the dopamine surge was sending him into a fight/flight mode and these kinds of things helped. It would often result in him feeling drowsy from the relief....
  12. Like
    qannie47 reacted to rowingmom in Magnesium makes her nicer but...   
    You can go as high as bowel tolerance will allow (any higher will cause diarrhea). DD13 gets 300 mg in the am before school and 300 mg at night before bed.
     
    Other forms of magnesium may not have bowel tolerance issues, ie magnesium glycinate, magnesium malate or magnesium taurate, but I'm not sure as we have never used higher doses of any of them.
     
    Our LLMD had DD on mag taurate (in addition to taurine) for a long time, but I found it cheaper to use mag citrate and taurine. She said that taurine is essential for children/people with neurological problems.
     
     
    http://www.lef.org/magazine/2013/6/The-Forgotten-Longevity-Benefits-of-Taurine/Page-01Taurine: One of the Most Essential Substances in the Body!
    It increases the action of insulin, improving glucose tolerance, and acting as an antioxidant.67 It is vital for the proper function of the minerals potassium, calcium, magnesium, and sodium.68 Taurine regulates heart rhythm, cardiac contraction, blood pressure, and platelet aggregation,69,70 and regulates the excitability of neurons.69 It detoxifies liver cells of various toxins.71-74 It helps form bile acids and maintains cell membrane stability.9 It reduces the synthesis of lipids and cholesterol that are associated with atherosclerosis.75  
     
    Magnesium chloride can also be purchased as a liquid/gel that is applied topically, negating bowel tolerance difficulties.
  13. Like
    qannie47 got a reaction from tj21 in Violent rages and ODD   
    I used benedrill when my ds was in the thick of it. I hated the thought that I was drugging him, but honestly, the crazy behavior was just too much to handle for any great length of time. It worked.
     
    I am sorry that things are so rough in your household right now...
     
    Best of luck with IVIG. We had great, lasting results with it
  14. Like
    qannie47 got a reaction from EAMom in PANS without tics or OCD?   
    strep can hide in the joints as it did in my son for years and it caused constant joint pain behind his knees. When we eradicated the Strep, years of joint pain went away...and never came back. Magic
  15. Like
    qannie47 reacted to pr40 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.
  16. Like
    qannie47 got a reaction from WorriedDADNMOM in Upcoming Doctor's Appointment   
    Well, he certainly is hitting many of the red flags when looking for a Pandas/Pans link. My advice is that you do not cancel his appointment. If this is Pandas/Pans, you are going to need to put a game plan together with your doctor. There is a very high likelihood that you will continue to see future flares; the faster you treat him with an abx, the faster he will recover from a flare. You have caught this early, this is GREAT news.
     
    I suggest that you read all that you can about this disorder. The more you understand about it's etiology, what to expect, and treatment options, the better prepared you will be to help your son.
     
    Best regards,
    Q
  17. Like
    qannie47 reacted to WorriedDADNMOM in looking for expert advice....pandas labs, treatment for a veteran pandas parent   
    Basil, Glad your here. Our stories very similar...... Several issues and observations. Let me know if you have any questions I can help with. For us it really was a step by step cascade of increasing symptoms. We have had adverse reactions to vaccines AND bacterial and viral infections. With that said:
     
    1) Milk allergy is part of the connection. We had behaviors in middle dd before tic explosion and worst major exacerbation.
    2) Eliminating dairy in an intolerant person will help eliminate inflammation and an immune response. During worst of initial exacerbation, yogurt, milk, blue dye......would all cause return or increase in tics/behaviors.
    3) Strep, Mycoplasma and EBV(mono) would be good ones to check. Among others.....need more history...family,previous infections etc.
    4) Zithromax for possibly 30-90 days(or longer) then transitioning to a periodic (m,w,f) prophylaxis to immune system modulation. Dr Schulman has a video of pandas docs using Zith in this manner. Kinda similar to a tapering of steroids. See this link.

    5) Eliminating triggers....milk, pets any thing that illicits an immune or allergy response. .....basically knowing again family history to build as comprehensive a picture as possible.
    6) Determining vitamin and nutrient deficiency. Supplementing where needed.
    7) Omegas-----Cod Liver oil for fighting inflammation and helping heal the brain......."essential fatty acids" that our just that... essential for our body.
    8) Curcumin-----Enhansa.....again anti inflammatory properties.....boosts immune system.
    9) Having a sick protocol to "prop up or assist" immune system during viral or bacterial infections.......Zinc, Vit C and Vitamin A I think.
     
    I know this sounds like a lot.....but it is what we have done and we are in a good place. It is very comprehensive and thorough. I will say that it has all been under the direction and supervision of a DAN/Integrative Pedi. We had 3 kiddos that were all affected by both vaccines and infections(Strep and myco.....and EBV) Our whole house was in a state of chaos, we had to do anything and everything our DAN said to do. We are glad we did.
     
    Should you have any questions, please ask. Good luck and God Bless........It does and can get better.
  18. Like
    qannie47 got a reaction from momslove in looking for expert advice....pandas labs, treatment for a veteran pandas parent   
    could this be a yeast die off reaction from the probiotic? Early on, when I first introduced probiotics, it caused all the same symptoms that you are describing.
     
    Chest pain, could this be from him doing some minor hyperventilating from anxiety??? I only ask, because there was a time in my life where I had anxiety, and I did some mild hyperventilating. Not in any big way, but a lot of long deep breaths, nobody even noticed...however, it cause strain on my chest muscles, and I experienced a fair amount of pain....
     
    elbow pain: is he ticking with his arms? If he is doing a weird move, it could cause elbow pain with constant intermittent movement.
     
    Optimized Curcumin by Douglas Labs. They are wonderful for ALL kinds of inflammation. I suggest them because I know they are the real thing with the best bioavailability. I no longer need to use motrin and it provided 24 hour relief .... for my pandas son or myself (I have chronic back neck shoulder pain).
     
    Don't mean to sound so simplistic, but I always start with the easiest answers....it has saved me time and money....
     
    Keep us posted, and good luck.
  19. Like
    qannie47 got a reaction from EAMom in Should We All Take a Bit of Lithium? NY Times Article   
    Both my kids are on liquid lith by purr encapsulations. I have seen mood stability and focus Improve with both my twins. 1/2 dropper one time daily
  20. Like
    qannie47 got a reaction from rowingmom in Constant Underlying Inflammation   
    I swear by curcumin/turmeric as a anti-inflammatory. It has worked so well for my ds. I finally found one that is not sooo expensive that works as well as the Douglas Lab's one that has been bleeding my pocketbook. It is called Pure Turmerc, and it is 750mg per 2 cap. It also has a pepperdine in it to help with absorption, which is necessary. I tested in on myself to make sure it works, it does! (I have chronic back/neck pain). It relieves my pain 100% around the clock. It is about $35 for 150 capsules as opposed to $45 for 60.
     
    What I also like about Turmeric, is that clinical research shows that it is also a natural anti-oxidant and cleans out the liver, a bonus for these kids whom have consumed lots of motrin in their young lives...
  21. Like
    qannie47 got a reaction from MaryAW in Massive flare   
    That being said, abx from what I know does not cause tics...the steroid, however, can be immediate...the positive results are telling. Cara, while I know how much this disorder can drive us crazy...give things a little more time before rushing to a conclusion.
     
    Best Regards,
    Q
  22. Like
    qannie47 got a reaction from rowingmom in Acute Onset of tics   
    It is the dramatic onset and the improvement with abx that is your big eye opener. My ds first "big" Pandas flare occurred at the same age, typical, and it took 6 weeks to see him return back to his normal baseline.
     
    If this is Pandas, Pans, it is likely that you will see that return to baseline close to 100%. Unfortunately, future illness may very well trip off the very same set of symptoms. My experience, and from others in this forum will support that, as well as the well documented clinical research studies conducted.
     
    You may be in for a long hall. Research this, there is much to be gleaned these days from the internet. NIMH, Dr. Koursevic. There is a more recent post that is titled, "who knew?" on this forum that will take you to a great collaborative website.
     
    When my son was diagnosed, I hit Pandas with everything that was currently available to treat him. First abx, when that eventually fails, (and some believe abx eventually does), we then did IVIG (clinical research shows very positive outcomes), T/A, proflactic amox/clave 250 mg. daily. daily vitamin supplements that include magnesium, Vit D, Vit C, calcium (helps magnesium absorption and vise versa), and high does of curcumin/turmeric as a natural anti-inflammatory. Probiotics..it is important.
     
    Find a doctor that your gut tells you that will help you. If they are not listening, move on quickly. Read, read, read. And then read some more. You will discover that you are your child's best advocate.
     
    Consider a gluten, dairy free diet. This can help many children.
     
    When you try supplements, try ONE at a time for 2 weeks before you decide about adverse side effects. Too many at one time will confuse results. If you get an odd reaction, still give it a little more time before you change...sometimes it takes the body a little time to adjust depending on methylation and you can see one step backwards before forwards...unless it is so over the top...
     
    PTSD: Every parent in this forum has experienced this..it is almost a hallmark of the disorder and co-disorders....You will get through this. You will get stronger and more confident.
     
    Best regards,
    Qannie
  23. Like
    qannie47 got a reaction from lpop in Acute Onset of tics   
    It is the dramatic onset and the improvement with abx that is your big eye opener. My ds first "big" Pandas flare occurred at the same age, typical, and it took 6 weeks to see him return back to his normal baseline.
     
    If this is Pandas, Pans, it is likely that you will see that return to baseline close to 100%. Unfortunately, future illness may very well trip off the very same set of symptoms. My experience, and from others in this forum will support that, as well as the well documented clinical research studies conducted.
     
    You may be in for a long hall. Research this, there is much to be gleaned these days from the internet. NIMH, Dr. Koursevic. There is a more recent post that is titled, "who knew?" on this forum that will take you to a great collaborative website.
     
    When my son was diagnosed, I hit Pandas with everything that was currently available to treat him. First abx, when that eventually fails, (and some believe abx eventually does), we then did IVIG (clinical research shows very positive outcomes), T/A, proflactic amox/clave 250 mg. daily. daily vitamin supplements that include magnesium, Vit D, Vit C, calcium (helps magnesium absorption and vise versa), and high does of curcumin/turmeric as a natural anti-inflammatory. Probiotics..it is important.
     
    Find a doctor that your gut tells you that will help you. If they are not listening, move on quickly. Read, read, read. And then read some more. You will discover that you are your child's best advocate.
     
    Consider a gluten, dairy free diet. This can help many children.
     
    When you try supplements, try ONE at a time for 2 weeks before you decide about adverse side effects. Too many at one time will confuse results. If you get an odd reaction, still give it a little more time before you change...sometimes it takes the body a little time to adjust depending on methylation and you can see one step backwards before forwards...unless it is so over the top...
     
    PTSD: Every parent in this forum has experienced this..it is almost a hallmark of the disorder and co-disorders....You will get through this. You will get stronger and more confident.
     
    Best regards,
    Qannie
  24. Like
    qannie47 got a reaction from tj21 in WHO AM I TO BE MAKING THESE DECISIONS?!   
    You touched on what has always been at the heart of a lot of my stress.....
     
    "AM I DOING THE RIGHT THING?" Geez, just saying that raises my blood pressure.
     
    Here is one of my "Take aways" that restored some of my sleep.
     
    Truly, it is highly unlikely that anything that you do, a decision that you make in the quest to help your child that will result in a irreversible result that can't be undone.
     
    In fact, this forum is filled with examples of "oops". I do not think you will find the "irreversible oops".
     
    That is the good news... The even better news is that we, the parents of Pans, Pandas children are so well read, so well researched , that we often make better decisions, and if not, we move on and learn from it...
     
    Sleep well!!!
  25. Like
    qannie47 got a reaction from momslove in WHO AM I TO BE MAKING THESE DECISIONS?!   
    You touched on what has always been at the heart of a lot of my stress.....
     
    "AM I DOING THE RIGHT THING?" Geez, just saying that raises my blood pressure.
     
    Here is one of my "Take aways" that restored some of my sleep.
     
    Truly, it is highly unlikely that anything that you do, a decision that you make in the quest to help your child that will result in a irreversible result that can't be undone.
     
    In fact, this forum is filled with examples of "oops". I do not think you will find the "irreversible oops".
     
    That is the good news... The even better news is that we, the parents of Pans, Pandas children are so well read, so well researched , that we often make better decisions, and if not, we move on and learn from it...
     
    Sleep well!!!
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