Jump to content
ACN Latitudes Forums

Mayzoo

Members
  • Posts

    1,100
  • Joined

  • Last visited

  • Days Won

    32

Posts posted by Mayzoo

  1. I have had great success with Stress releif tabs: http://www.iherb.com/Planetary-Herbals-Stress-Free-810-mg-90-Tablets/1599

     

    And recently I have tried lemon balm also: http://www.amazon.com/Natures-Way-Melissa-Capsules-100-Count/dp/B00020HQU0/ref=sr_1_1?ie=UTF8&qid=1362531209&sr=8-1&keywords=lemon+balm+%2B+melissa

     

    St Johns wort works well for many as well.

     

    For longer term, an SSRI + one of these for peek anxiety would probably work well together.

     

    I am starting a yoga program for pain relief as well, and I think it will help with stress as well http://www.amazon.com/Yoga-Rest-Us-Easing-Peggy/dp/B007G95HDI/ref=sr_1_cc_1?s=aps&ie=UTF8&qid=1362531420&sr=1-1-catcorr&keywords=easy+yoga+for+easing+pain.

     

    There are some good relaxing videos on YouTube as well if you can take a few minutes several times a day.

     

    I am going to learn how to meditate when I get a few minutes alone.

     

    Good luck and hope you all get to a better place soon.

  2. Has anyone ever tried the free courses on Open Culture? (http://www.openculture.com/freeonlinecourses) I have not tried one yet, but several on there now look interesting.

     

    Currently these are the ones under Biology/Medicine:

     

    Biology/Medicine

     

    Adolescent Health and Development - iTunes – Web – Robert Blum, Johns Hopkins

    Anatomy & Physiology – Web – Carnegie Mellon

    Animals in Research: Law, Policy, and Humane Sciences – Web - Paul A. Locke and Alan M. Goldberg, Johns Hopkins

    Animal Behavior – iTunes – Web – Gerald Schneider, MIT

    Autism and Related Disorders - iTunes – Frank Volkmar, Yale

    Behavioral Endocrinology – Feed – Johns Hopkins

    Biochemistry – Web – Carnegie Mellon

    Bioscience in the 21st Century – iTunes – Video Downloads – Team taught, Lehigh University

    Brain Structure and its Origins - iTunes – Web – Prof. Gerald Schneider, MIT

    Cardiovascular Grand Rounds - iTunes – Multiplate faculty, Emory

    Case Studies in Primary Healthcare – iTunes – Web – Henry Taylor and Henry Perry, Johns Hopkins

    Changing the Face of American Healthcare – Web Audio – Cynthia Toms Smedley, Notre Dame

    Clinical Anatomy – iTunes Video - Stanford

    Computational Molecular Biology – Web – Douglas Brutlag, Stanford

    Darwin’s Legacy – YouTube – iTunes Team taught – Stanford

    Enhancing Humane Science – Improving Animal Research - Web - Alan M. Goldberg & James Owiny, Johns Hopkins

    Environmental Health Sciences - iTunes Video - YouTube - Web - Kirk Smith, UC Berkeley

    Evolution, Ecology and Behavior – YouTube – iTunes Audio – iTunes Video - Download Course – Professor Stephen C. Stearns, Yale

    Frontiers in Biomedical Engineering – YouTube – iTunes Audio – iTunes Video - Download Course – W. Mark Saltzman, Yale

    Fundamentals of Biology – Web Site - Multiple Instructors, MIT

    General Biology 1 - Feed – John Hopkins

    General Biology 1 – iTunes Video – Web – Brian White, UMass-Boston

    General Biology 2 – iTunes Video – Web – Brian White, UMass-Boston

    General Biochemistry and Molecular Biology – iTunes – Multiple professors, UC Berkeley

    General Human Anatomy – YouTube – iTunes – Web – Marian Diamond, UC Berkeley

    Genetic Engineering in Medicine, Agriculture, and Law – YouTube - Robert B. Goldberg, UCLA

    Genomes and Diversity – Web Site – Mark Siegal, NYU

    Genomics & Computational Biology – iTunes – Web – George Church, MIT

    Genomic Medecine – Web Audio – Isaac Kehane, MIT

    Global Problems of Population Growth – YouTube - iTunes Audio – iTunes Video – Download Course - Professor Robert Wyman, Yale

    Growing Up in the Universe – YouTube – Richard Dawkins, Oxford

    Health Behavior Change at the Individual, Household and Community Levels - Web – iTunes – Peter Winch, Johns Hopkins

    Human Behavioral Biology – iTunes Video – YouTube – Robert Sapolsky, Stanford

    Introductory Biology – iTunes – MP3s/Videos – Multiple professors, MIT

    Introduction to Biology – YouTube – Multiple Professors – UC Berkeley

    Introduction to Biology – Web – Carnegie Mellon

    Introduction to Cellular & Molecular Biology - iTunes Audio – Lawrence Chasin & Deborah Mowshowitz, Columbia U.

    Introduction to Human Nutrition – Web – Nancy Amy, UC Berkeley

    Introduction to Human Physiology – iTunes Audio – Robin Ball, UC Berkeley

    Introduction to Immunology – iTunes Video – Gregory Beck, U Mass-Boston

    Introduction to Oceanography - YouTube – Edwin Schauble, UCLA

    Issues in Mental Health Research in Developing Countries – iTunes – Web - Judith Bass, Johns Hopkins

    Life, Concepts and Issues: Introduction to Life Sciences for Non-Science Majors – YouTube – Jay Phelan, UCLA

    Modern Biology – Web Site – Carnegie Mellon

    Molecular Biology: Macromolecular Synthesis and Cellular Function - iTunes Audio – Multiple Professor, UC Berkeley

    Molecules and Cells – Feed – Johns Hopkins

    Replaceable You: Stem Cells and Tissue Engineering – iTunes – Jill Helms, Stanford

    Straight Talk About Stem Cells – iTunes - Christopher Scott, Stanford

    Stem Cells: Policy and Ethics - iTunes – Christopher Scott, Stanford

    The Future of Human Health – YouTube – iTunes – Jennifer Raymond

    The History of Public Health - iTunesU - Web – Graham Mooney, Johns Hopkins

    The Stanford Mini Med School (Fall) – iTunes – YouTube – Web Site – Multiple Professors

    The Stanford Mini Med School (Winter) - iTunes - YouTube - Web Site – Multiple Professors

    The Stanford Mini Med School (Spring) - iTunes – Web Site – Multiple Professors

    The Stanford Mini Med School: The Heart – iTunes – YouTube – Multiple Professors

    Urban Health in Developing Countries - Web - Abdullah Baqui and William Brieger, Johns Hopkins

    Virology - iTunes Video – Vincent Racaniello, Columbia University

  3. I guess CURE is the wrong word. But he slipped so fast from October to December and now I'm starting to believe we'll never get him off the couch : (

     

    DS 14 was diagnosed with PANS/PANDAS by Dr.T this past November 11/2012 [strep. Coxsackie and Mycoplasma]. But we had started seeing body convulsions and what we learned later was scrupulosity (and OCD)in June of 2011. This past summer/fall the OCD started to get really crazy. Since November DS has been on many different abx (Biaxin, Augmentin, Clindomycin, Refampin, Doxycycline and Azithromycin) as well as Valtrex. Starting in November we were doing a ton of CBT and basically the OCD was just moving from one thing to another. In the beginning of January he shut down, he stopped going to school or doing anything associated with OCD (no shower, leaving the house, etc). We stopped the CBT as it wasn't helping. We later realized that he was getting strep again and again and his numbers for strep and coxsackie were rising.

     

    Two weeks ago (17 days ago) DS had an IVIG. Pros: He looks better, has better energy, is more animated. Cons: He still hasn't showered, changed clothes or left the house. Is there hope? Have others been through this and gotten better? When we try to push him in any direction he breaks down and cries. I dread that he'll turn 15 lying on the couch.

     

    Yes, I know IVIG needs more time, and that sometimes more than one IVIG is needed. It's just hard to watch. Another week has started and DH and I struggle anew to work and take care of DS (as well as get our two younger kids to school, etc). Honestly, I am depressed all over again.

     

    Any advice, stories, links to blogs or personal stories are greatly appreciated.

     

    Thanks as always,

    T.Anna

    DS 14 (4/1998)

     

     

    My daughter (11) was lost to us in September 2011. She stopped talking for 3 months, and she slept only about 20 minutes at a time and was awake screaming/hollering for 2.5 hours. Even now, she still will only whisper when she speaks, and we have no real idea why. I have not heard her normal voice since July 2012. There is hope, I am certain of this. We are trying a ton of herbalistic things right now since I really want to boost her immune system rather than wait for an infection.

     

    Good News: We are at about 85-90% of normal now. She will bathe without a huge fight, she has slept through the night several times this week. She goes outside with me and has fun while out there. We hear giggles far more than her vocal tic of hollering, and she is energetic and happy most the time. She goes to bed without a fuss as long as we leave the light on for her to read until she falls asleep. Most of the symptoms are improved or gone. We just had a T & A on Feb. 20th in the hopes that will help us clear infections. It appears that has gone pretty normally without inciting any flares or worsening symptoms yet. We are going to see an immunologist who is PANDAS friendly on the 4th of April, and see if we can get any more pieces to this puzzle figured out. To date, we have only pursued ABX and one time a steroid burst.

     

     

    Bad News: In the last year and half she has had the initial outbreak, and two major flares since then. Each flare is different in how it presents, but some things are consistent. She is anxious, separation anxiety is high, and nightmares return. The rest fluctuates. We almost reached 100% in July 2012, but she got sick again.

     

     

     

    So you can get an idea of how far she has come, here is a "short" list of the problems that developed overnight for her:

     

    (This list is from 10-2011)

     

    Symptoms (all new since onset, so likely unrelated to other conditions)--some are slowly improving with time and lots of work:

     

    * Insecure, clingy. I cannot go to bathroom alone any longer.

    * Frequent spills of her drinks

    * Difficulty transitioning from room to room everywhere including our house.

    * Increase in sound sensitivity

    * Selective mutism (no speaking) 98% of the last 3 months. Called selective because she mouths words sometimes when she reads and if forced, she will speak in a whisper. About 7 days ago she began speaking again (less than normal), but 90% of the time in a whisper.

    * Despite not speaking, she does "holler" all day and part of the night even when asleep (Holler is like a moan/crying out combined--not screaming, but louder than talking.)

    * Complains of pain in ankles, knees, left hand, and shins.

    * Sleep difficulties:

    * Wakes up numerous times in the night "hollering/screaming" wanting to get up. Now that she is speaking a bit again, she says she had a bad dream and "can't go to sleep"

    * Going to bed is now traumatic from the get go. Once in bed she 'hollers" for up to two hours until she finally goes to sleep.

    * When she wakes up, if allowed to, she will lay in bed and "holler" for up to two hours before she gets up and begins the day.

    * Will not get herself up out of bed at night or in the morning in any timely manner (takes hours).

    * States I cannot brush her teeth (she has never completely been responsible for brushing her teeth-but never fought tooth brushing before).

    * Very light sleeper now, wakes up with even tiny noises in the house.

    * Frequently day/night incontinent. States she cannot pee or poop in the potty.

    * No longer wants to go outside.

    * No longer will get in the car without a fight/emotional upset, crying.

    * No longer will shower or bathe without a fight/emotional upset, crying.

    * No longer will wash hands without a fight/emotional upset, crying.

    * States her daddy cannot love her. Has stated others cannot love her too.

    * She will not eat lunch/dinner unless coerced or bribed. Dinner is traumatic even if when she says "I can't eat" I tell her "then don't eat".

    * She will no longer read out loud to me. She never read quietly until this happened.

    * She fights tooth and nail through school work.

  4. Here is a forum search for Strattera. I do not anyone on here personally who has used it, but I knew I had read it mentioned several times:

     

    http://www.latitudes.org/forums/index.php?app=core&module=search&section=search&do=search&fromsearch=1

     

     

    Well, sorry, the search criteria did not stay in, so just put in the word strattera. I think I had 3 pages of results when I did this.

  5. Not sure if any of these will help, but here are some links that discuss basal ganglia lesions:

     

     

    http://www.stritch.luc.edu/lumen/MedEd/neurology/Disorders%20of%20the%20Basal%20Ganglia.pdf (I had trouble with this one loading on my system, but you may not)

     

    http://ivrylab.berkeley.edu/pdf/adi_05.pdf

     

    http://www.rightdiagnosis.com/sym/basal_ganglia_lesion.htm

     

     

     

    None of these may have anything to do with your situation, but maybe you can present them to whoever you feel is the best doc to think it over IF they are unclear on what could be causing these or how to treat them.

  6. All my daughter's teeth have broken into two or more pieces. Her dentist says it is perfectly normal and part of the drying/constricting of the teeth post removal. I even took one in for him to look at. He is a good dentist and a family friend who is very aware of her issues, but that does not make omnipotent, so if you learn anything contrary to what he said, please let me know.

  7. Eesh. Is she sleeping better? Less anxious or aggressive, anything like that?

     

    Kinda early to tell yet. The procedure was only 7 days ago today. Her anxiety is still up and displayed as separation anxiety. She has never really been aggressive. She slept through the night the last two nights, but she has had a night or two a week she did not have a nightmare for a few months now. She is mostly out of the worst pain now, but is still needed pain meds.

     

    I have noticed her pupils have been nearly as dilated since the surgery.

  8. I hate WebMD, but that information is probably correct and it was a very good idea of yours to post it.

     

    WebMD pulls info like that from reliable-enough sources like NIH and large professional associations. I used to work at place like WebMD. They're very biased to Big Pharma's marketing messages because that's who butters their bread, so to speak.

     

    I had a site I preferred for homeopathic interactions, side effects, etc and I lost it in a computer crash. Now I cannot for the life of me remember who it was. Do you have a favorite site?

     

    I just found this one again, I think this maybe was the one I lost:

     

    http://www.umm.edu/altmed/

     

    For drugs, I try to find its full prescribing information or its monograph and get the info from the horse's mouth. Never go to a drug's website. All of the useful information about the drug is available from non-commercial sources. A drug website's primary mission is to deliver its marketing messages. If its a dot com, they're just trying to sell you something. Arthitis.com, for example is a Pfizer website trying to sell you their pain drug, it is not trying to educate you about arthritis. If it was, it would have to tell you that, as an NSAID, it relieves pain as well as--not better than--any other NSAID, like Advil, and confers no safety advantage.

     

    Here's an example of a full PI (Augmentin's) from the FDA.

    http://www.accessdata.fda.gov/drugsatfda_docs/label/2008/050575s037550597s044050725s025050726s019lbl.pdf

     

    The Full Prescribing Information (PI) is a summary of the clinical trial data about a drug. Drug companies are not obligated to report ALL of a drug's trial data to healthcare providers or the public (which is criminal), but at least there's no marketing crap in it.

     

     

     

    As far as pharmaceutical drugs, I am R-CPhT (registered, certified pharmacy technician) for the last 25 years. So, I have all the drug books with monographs and access to medical web sights.

     

    I think that website I posted above is the one I was usually using for the listed items, but if you know of another I would love to look at it.

     

    I made a batch of green tea to start kiddo on tomorrow morning. I am thinking about adding home grown Yarrow to it. Hopefully it will help boost us over the hump we are on. I will tweak it as best as I can.

  9. What is lemon balm? A supplement? tea? Thanks.

     

    I bought a capsule. I think it comes in a tea and a lotion as well. Here is the link for what I bought:

     

    http://www.iherb.com/Nature-s-Way-Melissa-Leaves-100-Capsules/2015

     

    Here is a synopsis and a link to a pretty good site:

     

    "Other uses

     

    Some evidence suggests that lemon balm, in combination with other herbs, may help treat indigestion. Others reveal that lemon balm oil has a high degree of antibacterial activity. In one study, lemon balm showed adequate activity against Listeria monocytogenes and Staphylococcus auerus. And a few studies have found that lemon balm may help improve cognitive function and decrease agitation in people with Alzheimer's disease."

     

    http://www.umm.edu/altmed/articles/lemon-balm-000261.htm

  10. I hate WebMD, but that information is probably correct and it was a very good idea of yours to post it.

     

    WebMD pulls info like that from reliable-enough sources like NIH and large professional associations. I used to work at place like WebMD. They're very biased to Big Pharma's marketing messages because that's who butters their bread, so to speak.

     

    I had a site I preferred for homeopathic interactions, side effects, etc and I lost it in a computer crash. Now I cannot for the life of me remember who it was. Do you have a favorite site?

     

    I just found this one again, I think this maybe was the one I lost:

     

    http://www.umm.edu/altmed/

  11. We've been using an iPhone app called Live OCD Free: http://www.liveocdfree.com It is a great adjunct to ERP therapy (it was made by an ERP therapist) and can be downloaded in an adult or kid version. My dd is 11 and uses the kid version. We have a few minor quibbles with the app (can't download your own music to the "Secret Weapons' tool and dd thought the explanation of kids defeating the "Worry Wizard" seemed too easy for something she finds so hard), but I find it to be a valuable tool. You can email progress reports from the app to a therapist and it is an unobtrusive way to practice ERP when anxieties hit away from home. Best of luck!

     

    For those of us without an iphone, ipad, or any other i thing, will it download and work on a computer? The only i thing I have is an older ipod. I will do some research also. Thanks

  12. I have two kinds on hand, and I have seen a peppermint green tea in my local store. One kind I have on hand is called "Zen Green Tea" by Tazo. It has green tea, lemongrass and spearmint. Makes me wonder if that is caffeine free or very low on caffeine. The other I have is Tazo's "China Green Tips". It has only green tea tips in it.

     

    Is there a brand preferred?

  13. We have been doing some very minor ERP because we do not deal with many OCD symptoms right now. We are dealing mainly with severe separation anxiety that is also contributing to nightmares. After reading a lot on here, I decided we should name her anxiety, and make up a song that tells it to go away emphasizing how brave kiddo is and how powerless "Ivy" is. Kiddo is very song driven for learning and motivation. We will see how this works out. I am also going to start some homeopathic anxiety meds to try to aid this along.

  14. We are going to try the lemon balm (I bought a 490mg by Nature's way, Melissa leaves). How often and how much are you giving?

     

    Right now she has such separation anxiety that I cannot get her to be more than 2 feet away from me and I am bumping into when I am cooking. I cannot even go to the bathroom alone. We dealt with this before, but it resolved with the ABXs. So far, no resolution yet. I am hoping the T & A will help in the long run as we get some of the infections under control without the tonsils being a constant source of reinfection.

     

    Thanks for all the replies.

  15. If you want something for anxiety and not ocd, I really recommend trying the lemon balm. I tried it myself for 3 days before giving it to my ds, 23. It really works. He has been taking it for about 10 days and his fingernails that were barely visible have all grown out and need trimming. Saw his Rheumatologist today, he could not believe it. It is natural so both his neuro psychologist/pharm D and rheumatologist said it was fine to use. Fairly inexpensive.

     

    We are going to try the lemon balm (I bought a 490mg by Nature's way, Melissa leaves). How often and how much are you giving?

     

    Right now she has such separation anxiety that I cannot get her to be more than 2 feet away from me and I am bumping into when I am cooking. I cannot even go to the bathroom alone. We dealt with this before, but it resolved with the ABXs. So far, no resolution yet. I am hoping the T & A will help in the long run as we get some of the infections under control without the tonsils being a constant source of reinfection.

     

    Thanks

  16. I'm sure there are better sites, but here's one I have bookmarked:

    http://www.medicalinsider.com/bacterial.html#top

     

    Halfway down this table of contents, you'll see a section on probiotics. I think learning about gut bacteria is fascinating. But reading that a certain strain of probiotic is beneficial and finding that strain in a capsule I can buy have been two different things. Consuming fermented foods isn't going to happen in my house. So we've been limited in what we can find and mostly shoot for blends.

     

    As for the 2 hr window away from abx, we've been able to do it by giving abx at dinner and then probiotics at bedtime. That sends the probiotics into the stomach when the stomach is less active/lower acid and lets the probiotics sit in the intestines overnight, hopefully helping with digestion and having a few hours to do some good.

     

    Just curious, but which strain can you not find in capsule?

  17. Rant away. I'd like rant about quest but ill stick to the topic. You had her tonsils out even though they looked perfectly fine? Was she having recurrent strep or other infections? DS has an ENT appt to check out his chronically bleeding nose on Mon. I'm going to have the ENT look at his tonsils too, even though he has not had problems with them.

     

    Yes, she has had recurrent strep, once for 60 days straight despite ABX treatments all 60 days. Even then I was told her tonsils looked fine. She had strep again in July and again in September. Each time we aggressively treat to rid her of behavioural issues related to illness (she is asymptomatic when ill other than behaviours) she makes gains. Within a week or two of stopping the aggressive treatments, she is behaviourally reacting to an illness again. She is home schooled and has not had a lot exposure to other kids lately, so minimal exposure to bacteria. I am determined she had bacteria in her tonsils hiding only to "seep out" after we stop aggressive treatment. The ENT agreed to remove them, even though they looked fine, based on her history.

     

    Of course, they did call in amoxicillin......now I get to call them back tomorrow. If keflex does not kick this, what possibly makes them think amoxicillin will.

     

    Quest the lab? So far we have had pretty good luck with them. Feel free to rant on if you need to :). It can help you release stress and tension.

  18. Grrrrrr. Her ENT called back and stated she did not need to be on ABX to treat this. I told them what I had found. They still are adamant she does not need ABX to treat this, so I told fine I thought the JAMA Pediatric Journel of Medicine (which states this bacteria frequently invades glands near by and ABX need to be given) was a reliable source, but if the doc would not prescribe them then he just would not. I told them I would be taking her to Dr. Rao if this ENT would not treat her for this. They finally relented and stated that if it would make me feel better they would call them in, but they do not feel they will help her any.

     

    Two autoimmune issues, already on prophy ABX and still with bacteria and debris in her Tonsils and he does not think anything else needed to be done. *Sigh* I just do not get it. I am not asking for morphine. I am asking for ABX with a positive histology report.

     

    I guess I should be happy that they even called back with all the problems I (we) have with Docs now days. I am willing to be they call in Amoxicillin even after I reminded that she is on Keflex already prophylacticly meaning she cannot take amox with that.

     

    End of rant I hope.....sorry folks.

  19. I just received kiddos lab results and I am beginning my google research for any parts of it I do not understand. Here is what they were:

     

    Tonsil A & B samples had prominent crypts filled with debris.

     

    Tonsil A

     

    1. Chronic Hyperplastic Tonsillitis

     

    2. Intracryptal aggregates of mixed and filamentous bacteria, consistent with actinomyces.

     

    Tonsil B

     

    Chronic Hyperplastic Tonsillitis

     

    So far my research indicates these are not extremely remarkable results, but they are definitely contrary to what I have always been told that her "tonsils look perfectly healthy."

×
×
  • Create New...