filinha1

So all I really wanted to do was go trolling on Huffpost for some mindless entertainment, but smack-dab in the middle of the page was a link to an article called 'Lyme Disease Myths'. Mindless entertainment was derailed and yet another evening was spent on the topic of Lyme disease. http://www.huffingtonpost.com/2013/05/20/lyme-disease-myths-facts_n_3287872.html?utm_hp_ref=mostpopular Reading the outraged comments following the article - which was filled with inaccuracies - provided some great links. Here are a few: Interview with Luc Montagnier, awarded Nobel in 2008 for his part in discovering the AIDS virus. He discusses Lyme as we on this forum have come to know it and validates those in the medical field treating w/ long-term abx - All natural insect, tick etc. repellent I had never heard of, backed up by research - http://www.greenbugallnatural.com/index.html Blogpost written by a physician with Lyme disease, addressed to her colleagues - http://www.zubcevik.com/2013/05/20/lyme-disease-manifesto-for-my-dear-colleagues/ Now I'm just too tired to find out if Beyonce is pregnant again. Heather

We see a nurse practitioner who regularly works w/ Dr J. She is in DC - Kayleen Clute - http://ruthkriz.com Good luck, Heather

Thank you!

Clindamycin HCL and Doxycycline monohydrate are also on the list in addition to minocycline - both abx sold in the U.S. by Ranbaxy. I checked my dd's minocycline and fortunately manufactured by another company. It does make you think - what happens with the large 500 million dollar fine levied against Ranbaxy? Why hasn't the FDA alerted the public using these drugs to the issues with the manufacturer? Does the FDA hold the monies from the fine in some kind of escrow against the possibility of claims?

This is the link to the list of Ranbaxy generics sold in the U.S. - http://fortunefeatures.files.wordpress.com/2013/05/ranbaxy-products.pdf

Kathy, try this: http://features.blogs.fortune.cnn.com/2013/05/15/ranbaxy-fraud-lipitor/ Heather

This is a link to an article about an Indian company incorrectly manufacturing many generic drugs sold in the U.S., antibiotics included. Scroll down through the article for a link to the list of specific drugs: http://features.blogs.fortune.cnn.com/2013/05/15/ranbaxy-fraud-lipitor/ Heather

I think this is fascinating and that the internet is creating a huge, democratizing shift in who has the power in all kinds of areas. Docs may initially brush off informed patients but they will eventually have to accept that they no longer hold all the knowledge cards and will have to change how they interact - and maybe even how they treat - accordingly. I'm going to guess that patients will find the right providers to treat the same way we do on this forum. Power to the people. Heather

Hi Jen, I homeschool my 11 year old dd and have for a year, starting when we first saw PANDAS symptoms. It has been a great decision for our family, regardless of the fact that it was never an option I had considered prior to her getting sick. It has taken the pressure off of all of us and brought joy in unexpected ways. There is good rationale to not accommodate this illness further by making another major life change like leaving traditional school. However I think there are real benefits to homeschooling that make it a positive choice regardless of illness. Most importantly, homeschooling is not a life sentence. Your child can return to traditional school whenever it seems right for everybody. You can pm me if you want and I'll go into more detail about getting started, options for curriculum, homeschooling styles etc. Best, Heather

Oh yeah! I asked my husband for the gift of solitude on M.D. - a souped up way of saying time to watch Real Housewives and putter around eating chips in peace - and he took dd fishing for the day. It was great. Good for you! Heather

How does your daughter behave out in the world, away from her family - does she keep it together? if she has the inner resources to do that, maybe an rtc would be a viable option for her. I often wonder if the fact that I homeschool my daughter might inhibit her ability to keep herself together, even when she doesn't feel like it or think she can do it. She's surprised me in that regard. I wonder at what point my helping and bending over backwards, often at the expense of my mental and physical health, my relationship with my husband, friends and extended family is actually enabling the negative behaviors I see. Yes, I know my daughter is fighting an illness and deserves all my empathy and help, but am I doing her justice by relaxing all standards of character and decent behavior? Can she help just a little of how she is acting? Or not? I know I'm constantly re-evaluating how much to allow and when to put my foot down. Hourly. Daily. I just don't know. I do understand the place you're in. Maybe and old fashioned list of all the pros and cons of an rtc might help. Then, you have to know that whatever decision you make, you have done the best you can do with what you know right now. Try to be honest with yourself about what you can live with in terms of behavior and what will put you under. I know this is incredibly hard to do and I don't want to be glib about it. When this stuff first starts, adrenaline keeps you going, doing research, learning to deal with the rages, fighting for your child. When the battle goes on and on, it's as if we're cycling through the five stages of grief over and over again: denial, anger, bargaining, depression and acceptance. It is mentally and physically exhausting. When I was fried one night I turned on the tv and landed on a channel where Suze Orman was talking about people and their relationship to money. She framed the idea of generosity in a way I hadn't thought of before. She said people confuse giving and true generosity; the latter can only exist if the act is kind to both the recipient and the giver. I realize the analogy doesn't quite fly when talking about our relationship with our children, for whom we would do anything, but there may be a nugget in there worth considering for that relationship too. What value are we going to bring to them if we have depleted ourselves completely on their behalf? Again, no easy answers here but another point of view. A big cyber-hug to you, Heather

To all of you incredible, dedicated, strong, kind, supportive and fierce women and mother's on this forum I say "You Rock!" On this day, the tv ads and magazines and stores everywhere want to show us opening boxes to find heart-shaped diamond necklaces, smiling in our robes and opening cards. Many of us, not only on this forum, are just not those Moms. Those ads can remind us of what we don't have, or they can remind us of what really matters. Our Mother's Day wish is simple; to look into the eyes of our children and see happiness. That's it. That gift to us may have come as a temporary reprieve last week on a 'good day' or it may come tomorrow or next month. For me, today, on Mother's Day, I rejoice in the gift of my imperfect life that looks nothing like those ads. I rejoice in the gift of my imperfect child. I rejoice in all of you while we struggle together, fighting for what really matters. Happy Mother's Day. Heather

I was describing how I felt to a friend recently, the mom of an autistic daughter who understands life in the trenches, and she said "It sounds like you have PTSD." I bring this up only as one more example that you're not alone in your coping response. You're brave to step up to the plate to heal yourself and to bring it to the group as a red flag that may help others. Good luck on your journey - I wish you the best. Heather

I'm trying to figure out the ADHD component for my 11 yr old dd, as well. Teasing out diagnoses can be very difficult, especially with PANS in the background, as a potential reason for the symptoms in the first place. Deciding at what point during treatment for PANS to look at other diagnoses as separate entities to treat is also a tough call. Looking back, dd has always had characteristics of an ADHD kid. She makes friends easily but doesn't keep them - she's bossy and domineering and I think can come across as mean. She's impulsive. A chatterbox in class who managed to get good grades, although grades may have dropped off heading into middle school. (I homeschool her now.) Very touchy and easily frustrated. I think in the long run, many things can cause school refusal and ADHD is just one of them. So, using school refusal as a possible diagnostic criteria for ADHD just isn't enough. Maybe getting a neuropsych eval might be a way to go, so many different components are looked at - learning disabilities, executive functioning etc., in order to get a clear picture of what your son is dealing with. I think we're going to pursue this route. Good luck! Heather

I'm wishing you and your son the very best tomorrow and hope the IV treatment makes a big difference. Best to you both, Heather

Wow and double-wow. This is huge news. Coincidentally I had just finished an article on this very topic: http://www.slate.com/articles/arts/books/2013/05/book_of_woe_the_dsm_and_the_unmaking_of_psychiatry_by_gary_greenberg_reviewed.2.html I think it is long overdue that the public interest be served by federally funded research on the brain and not by research funded by the pharmaceutical industry. The office of our child psych is filled with knickknacks from drug companies - zoloft paper-weights, risperdal pens, abilify notepads! i don't think all those rep-sponsored lunches and goodie bags and who knows what else, can have NO effect on diagnoses and prescribing. Thanks for this interesting update! Heather

Dag, all you women are smart! Thanks for all this good info. Our LLNP came back with a reply to give Claritin D, which I tried today and had no effect at all. I'm thinking I made the wrong call and dd has a cold/flu after all. Heather

Thanks, I'll check it out. H

Interesting. What does the Pepcid have to do with allergies?

Hi there, My PANDAS/PANS dd seems to be having allergies right now - stuffy nose, sinus pain etc. Any thoughts on OTC treatments that won't send her ocd into the stratosphere, or otherwise negatively impact an autoimmune disorder? Tx, Heather

Thanks to all of you for the info! Heather

Hi Kathy, I'm glad something like lemon balm seems to be working / helping your son. It sounds like you are using a capsule form - would you give some more details? Tx, Heather

One final thought on rispeerdal vs. lamictal. Several people have weighed in on the use of psych meds and referred to lamictal as the drug of choice for mood stabilization and I agree. This opinion about the preference for lamictal is fairly unanimous on some of the other forums I read. Our psych originally wrote for lamictal but because our situation had gone downhill hard and fast he switched to risperdal, which is much faster acting - hours instead of weeks. Dd did so well on it the psych voted to keep her stable and stay on that. Heather

Hi there, I'm not sure which meds your daughter is taking and this will probably be an unpopular opinion, but I think there are time when psychotropic meds have a place in your arsenal. Yes they deal with the symptoms and not with the problem. Sometimes though, that is the best you can do in a bad situation. I will say unreservedly that a low dose of risperdal saved us when my dd was at her worst. Most important, it calmed her down enough to take the many abx and supplements required to get beyond the symptoms to the underlying problem. She is still on risperdal and of course that is its own problem; is her remarkable improvement due to risperdal or the PANDAS / PANS protocols we are following, or both? Against the advice of the child psychiatrist, who believes she has a mood disorder (read euphemism for bipolar disorder), I have been steadily lowering the risperdal and gauging her reaction. I don't think any decision about medications, psychotropic or otherwise, can be taken lightly. With that in mind our choice was to weigh the good the bad and ugly of all the meds we give, and do what we have to to keep the whole family functioning, not just our sick child. Good luck with your daughter - this stuff sure ain't easy. Heather

Thanks Chad, for all the detail you provided. I'm interested that your symptoms resolved with tonsillectomy and adenoidectomy. These procedures don't seem to be generally recommended now for treating PANDAS, but they worked for you, clearly! Just last week I asked our LLNP about this and she basically said the procedures were not the first line of treatment, especially if the child doesn't have a lot of strep throat problems. However I had also just read a blog on Psychology Today, written by a psychiatrist who does recommend doing them for PANDAS. Anyone have any thoughts or knowledge about this? tx, Heather