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thereishope

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  2. What does Herxing mean?

    in PANS / PANDAS (Lyme included)

    Posted

    Well, I can give an opinion if I look at it from Myco P....I've had kids who are symptomatic with Myco P and their only symptom was the cough.They were in great spirits and you'd never think they were sick. Keep an eye on it.

     

    Another mom on here, SarahJane, may be a good one to touch base with. Her son I think is finishing up a script for possible hidden Myco P and her son started with a cough after starting the meds. But I don't remember his timeline for starting abx and having the cough start.You can always message her about it for more info.

  5. TX A&M updated their site

    in PANS / PANDAS (Lyme included)

    Posted

    This is directly from the TX A&M website:

     

    http://medicine.tamhsc.edu/research/centers/ccdd/upcoming-events.html

     

    October 13 – 14, 2011

    POST-INFECTIOUS SYNDROMES AFFECTING COGNITION: WHAT IS THE NEUROLOGICAL AFTERMATH OF POST-INFECTION?

     

    This symposium will address potential links between the “after-effects” post-infection and cognition, the nervous system, and behavior. As such, the Symposium has two purposes: (1) scientific exchange in aid of understanding the mechanism(s) of chronic disease and (2) physician education and awareness to improve diagnosis and treatment of post-infectious syndromes. It is open to physicians, psychiatrists, researchers, clinicians, medical and graduate students, mental healthcare professionals, and interested public and/or patient advocates. Day 2 will focus on post-infectious syndromes affecting the nervous system in children. CME credits will be offered for each day of the Symposium.

     

    While the scientific sessions will be highly technical, we do welcome representatives of those patients, or parents of patients, who serve as patient advocates. Their efforts have served to make the scientific and medical community aware, not only of the disease, but also of the issues surrounding it. They have made the clinical community aware of the need for education and awareness of the disease process, the need for new approaches to therapies and the need for new understanding of the treatments currently used. The patient advocates’ crusade has been instrumental in raising public and professional awareness of the issues and has the potential to give a voice to the larger numbers of people affected by the disease.

     

    Due to the overwhelming response generated by this event and the space constraints we face, a limit may have to be placed on the number of scientific, medical professional, and patient advocate attendees, so that we can accommodate only those that are officially registered for the event. You may sign up for either Day 1 or Day 2 of the Symposium, or both. Registrations will be taken on a first-come, first-serve basis, by category. However, we will have video-recordings of the event available for purchase after the symposium and possibly a live webcast of the event itself.

     

    PRELIMINARY AGENDA – Times will soon be announced and a website to register, sign up for CME credits and reserve hotel accommodations will be provided as it becomes available. All participants must register through the registration website, regardless of whether they desire CME credit or not.

     

    Thursday, October 13, 2011

    MEC Lecture Halls 1 & 2, Scott & White Hospital/ TAMHSC College of Medicine, Temple, Texas

     

    Friday, October 14, 2011

    TAMHSC College of Medicine Medical School Auditorium, Round Rock Campus, Round Rock, Texas

     

    WHO SUFFERS FROM POST-INFECTIOIUS NEUROLOGICAL SYMPTOMS? WHY PROPER DIAGNOSIS AND RESEARCH ARE CRITICAL

     

    Confirmed speakers include the following, along with many other distinguished participants:

     

    W. Ian Lipkin, M.D., Keynote Speaker – Director of the Center for Infection and Immunity, Columbia University

     

    Sue Swedo, M.D., Keynote Speaker, Chief of the Pediatrics & Developmental Neuroscience Branch at NIMH

     

    Madeleine Cunningham, Ph.D., Keynote Speaker, Professor Microbiology and Immunology University of Oklahoma Health Science Center

     

    Margo Thienemann, M.D., pediatric psychiatrist, Stanford University

     

    Brian Fallon, M.D. – Director, Center for the Study of Neuroinflammatory Disorders & Biobehavioral Medicine, 
Columbia University

     

    Noel Rose, M.D. – Director, Center for Autoimmune Disease Research, Johns Hopkins University

     

    Jack Antel, M.D. Montreal Neurological Institute and Hospital, McGill University

     

    Mady Hornig, M.D., Associate Professor of Epidemiology and Director of Translational Research in the Center for Infection and Immunity, Columbia University

     

    Patrick Cleary, Ph.D., Professor Department of Microbiology, University of Minnesota

     

    Rita Cantor, Ph.D., Professor in Residence, David Geffen School of Medicine UCLA, Neuropsychiatric Institute

     

    Tanya Murphy, M.D., Professor and Director of Rothman Center for Pediatric Neuropsychiatry, University of Southern Florida

     

    Kyle Williams, M.D., Fellow, Albert J. Solnit Integrated Training Program, Yale University

  6. We Went to the Denist

    in PANS / PANDAS (Lyme included)

    Posted

    Thought I'd share our trip to the dentist. Our PANDAS ds went in for routine checkup 6 months ago. His newly formed 6 years molars were already slightly soft when they did a pressure test. It was suggested to get sealants and we passed. Then a couple weeks ago, it once again time for routine check up. Those 6 year molars were softer now according to the pressure test, but only borderline cavity. We were told his 6 year molars had extremely deep grooves, deepest the dentist has seen in his 22 years, and we were once again suggested to do sealants.If they did sealants, they would have to rid the teeth of the soft spots first.

     

    After a lot of contemplation, and some still existing hesitation, we decided on the sealants since he had those deep grooves and I guessed he inhereited my awful teeth. In order to get rid of the soft spots, they would use a fast circulating brush like instrument that would brush away those soft spot prior to sealant. It was not drilling. No novocaine would be needed.

     

    So, he went in this morning. After the dentist started to "brush away" the soft spots, he said the enamel on his back teeth never developed. There can be a number of reason why and with some kids it just doesn't. We did nothing wrong. It also ended up he had cavities in two of those molars with no enamel. This is a kid that does not eat a lot of sweets, doesn't chew gum, never drank a drop of soda in his life, and brushes his teeth daily. Those molars are less than a year old.

     

    The good news, no novocaine was needed still it was so superficial. When I got home, of course I researched lack of tooth enamel and it said kids with immune problems can have this issue.

     

    So, the reason for this long post is just to share our experience so if you find yourself with the same decision to make, you have more info to help you make your own personal decision.

     

    For us, I'm glad we did this now. If we waited, it could have eventually led to a worse cavity or a root canal which would run a higher chance of emitting bacteria into the body, needing anesthetic, etc.

  7. Strep season?

    in PANS / PANDAS (Lyme included)

    Posted

    I'm sorry. Do you have anything anti-inflammatory you can give as well? I have been reading a lot of kids getting back from camp and vacation and having symptoms resurface, probably due to exposure, coming off the excitement of the trip, and being tired and having to adjust back to life and routine at home. So, let's hope that is what it is and in a few days she will shed what has resurfaced. Push sleep and being laid back. I hope and pray all levels out very quickly!

  8. When to take the next steps?

    in PANS / PANDAS (Lyme included)

    Posted · Edited by Vickie

    I'm sorry. It's hard to hear words like that come out of your child, especially when they are so young.

     

    May I ask how open you and your husband are in talking about PANDAS, strep, etc in front of your son? I ask because I had to learn to stop saying things like "I think he has to go to the doctor" to my husband in front of my son as I realized that caused him more pain, anxiety, and sadness. I also had to learn to watch what I say like if he acted oddly, not to say under my breath, "I hope we don't have to go for a strep test". Don't know how open you are around him, but perhaps it may make a even a slight difference in how he views what is going on.

  11. Urgent...zith. or keflex for strep? ped. and DR. L apparently HATE zit

    in PANS / PANDAS (Lyme included)

    Posted · Edited by Vickie

    The ped's in my office say the same thing for strep and Zith. I think certain areas may see more resistent strains?

     

    Were they already on any antibiotics? When strep re-entered my house, the kids went on Omnicef but depending on insurance, it could be a pricey prescription. It was for us. For all 3 kids, it cost a total of near $200. Keflex is also a cephalosporin but I believe it costs less.

     

    Otherwise, you can go for Augmentin.

  18. IOCDF Meet and Greet Tomorrow

    in PANS / PANDAS (Lyme included)

    Posted · Edited by Vickie

    Well, that wouldn't matter if the child is already known to be asymptomatic to strep infections. But, yes, if the child gets white spots and pus on their tonsils when they have strep, that may be a good reason to keep them. they act as an indicator.

     

    I think there are some children that benefit from having t and a , it's just also hard to pin point having tonsils removed as the reason for having less strep.

     

    I know I,as a child, had NUMEROUS bouts of tonisilitis (may have been strep but never tested, just given penicillin) and never had tonsils removed because that was the time when tonsils were kept because they deemed it an intergral part of the immune system. Now, as an adult, I wish they were taken out.

     

    I think if/when a PANDAS child goes for t and a, one really should weigh the time of year, what kind of stress the child may be under after surgery in terms of school and similar and how their PANDAS symptoms are. With my child's PANDAS symptoms in mind, I could not see putting him through even a consult whne at his worst or early on/mid way into recovery.

     

     

    I wonder too, if that is another "downside" of T & A; not less likely to GET strep, but less likely to be symptomatic in the regular way (not behaviorally)?????

     

     

  21. "Sudden Onset" definition and studies

    in PANS / PANDAS (Lyme included)

    Posted

    That would be the ideal, but then you still have the other kids that will be denied abx because they don't test positive for something. So, I would think this defintion is to also protect those children and show doctors they can "over ride" the strep tests and such because the child fits the PANDAS criteria otherwise.

     

    I think what the ideal is is that a child will get more than the normal 5 days Azith or 10 days Augmentin if they fit the criteria. To date, parents still have a hard time getting this from their first line of defense...the pediatrician. Docs still want that official diagnosis before prescribing more than the typical course of meds. I can see some saying "I'll give you 10 days worth, but then we need to wait the month that is cited and go from there".

     

    Sorry...yes...one month or less is fine

  23. "Sudden Onset" definition and studies

    in PANS / PANDAS (Lyme included)

    Posted · Edited by Vickie

    Question, do you think if it is worded this way, docs will make kids wait a month to see how bad they get or if they will refuse to treat until the child is fully incapacitated? Don't want that window of catching it very fast to hopefully remit it with antibiotics to pass.

     

    "Sudden Onset means a change of symptoms from a baseline of functioning behavior to an inability to function over the course of 1 month. This abrupt change of behavior may be measured using standardized instruments such as a change in CYBOCS of +16pts or by noting changings over time. In general, the child was functioning (perhaps with some quirky behavior/compulsions) and has transitioned to being unable to function (constant imparement, "possessed", everyone on eggshells, unable to function in a school setting)."
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