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JuliaFaith

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  1. Like
    JuliaFaith got a reaction from philamom in Cannabis oil   
    Hello! Have not been on for a while...but my ds17 is using CBD.
     
    We are using Bluebird Botanical Bulletproof CBD blend. It has other ingred. that our ND likes too. We started at 15 drops at night and now do it 2xday. The only reaction I have seen in 3 weeks is a more calm son. They have this in a new dosage (6x amount) which I will be ordering next since it would only take 2 drops. They have a 35% off now with discount code: bp6x (lower case) until Feb. 1. Will address reducing dosage days at his next doctor visit in a few weeks. The folks at Bluebird mentioned that some reduce to 4-5 days a week because it builds up in the system.
     
    Bluebird product is legal in all states (legal info on their site) because of ingredients.
     
    We are using for brain healing. Other interesting product we are using for depression is "Gabawave" produced by Bulletproof Nutrition, Inc. which is produced in my area. Best wishes and good luck!
  2. Like
    JuliaFaith got a reaction from SSS in Cannabis oil   
    Hello! Have not been on for a while...but my ds17 is using CBD.
     
    We are using Bluebird Botanical Bulletproof CBD blend. It has other ingred. that our ND likes too. We started at 15 drops at night and now do it 2xday. The only reaction I have seen in 3 weeks is a more calm son. They have this in a new dosage (6x amount) which I will be ordering next since it would only take 2 drops. They have a 35% off now with discount code: bp6x (lower case) until Feb. 1. Will address reducing dosage days at his next doctor visit in a few weeks. The folks at Bluebird mentioned that some reduce to 4-5 days a week because it builds up in the system.
     
    Bluebird product is legal in all states (legal info on their site) because of ingredients.
     
    We are using for brain healing. Other interesting product we are using for depression is "Gabawave" produced by Bulletproof Nutrition, Inc. which is produced in my area. Best wishes and good luck!
  3. Like
    JuliaFaith got a reaction from dut in Never thought Strep was an Issue---it may have been.   
    We are using 'Chlorhexidine' as a swish and spit 2xday. Ds swishes for minimum 30 seconds. Best to do after eating and before bed so it stays in mouth.
     
    The reasoning behind the xylitol gum is that it is on the mouth for so long. Other rinses may not have as much effect per doctor.
     
    Jenniferg-- Azith abx did not kill the strep which tested positive and is the same kind as you find in throat.
  4. Like
    JuliaFaith reacted to Rachel in Homeschool/Cyber   
    My son does the K-12 online school and does have an IEP. It's has been a really good experience for us. I meet online with his teachers and tell them what modifications are needed. When my son started IVIG treatments in April last year, they slowed down the pace of his school work. They sent a teacher out to give his end of the year testing with modifictions. The best thing you can do is communicate with the lead teacher and let them know what is going on. K-12 online public school has been a wonderful experience.
  5. Like
    JuliaFaith reacted to LNN in Brain Imaging Differences in Tourette and PANDAS   
    Some of my FB friends passed this along....
     
    Brain images of neuroinflammation in children with Tourette syndrome are different from those in children with neuropsychiatric disorders related to streptococcal infections, new research shows.
    http://www.medscape.com/viewarticle/826614
  6. Like
    JuliaFaith reacted to BeeRae22 in SHE'S EATING! Omg, SHE'S EATING! ;)   
    Happy news and I had to share-- I'm bursting at the seams!!!! Last night dd started eating! 2 pieces of bread, 2 pieces of cake, 2 cookies (even had chocolate chips in them!), a Popsicle, and then a personal sized homemade pizza- ate almost the whole thing!!! This is the most she's eaten since NOVEMBER!!!!!! And she had cake for breakfast this morning, and was asking for more pizza!!!!!!
     
    I sure hope this continues. I am so thankful for this victory. It's probably hard for someone who's never experienced this how f@)$&@;king happy someone could be to see someone do something so "simple" as eating!!! I'm ecstatic!
     
    Day 12 minocycline.... Coincidence? I think not!!!! Each time she's tried a new abx she's seen improvement at approx 2 weeks, but this is the first time eating has happened!!! I'm sure the CBT has helped (well, maybe, I'm not exactly SURE about that) but I don't think therapy made her suddenly pig out like that. That was too sudden for response to exposure therapy in my opinion. Whatever it is, I'm thankful. And I'll keep doing everything we're doing and hope and pray this progress continues!!!!
  7. Like
    JuliaFaith reacted to qannie47 in Igg blood work back...   
    Some of you may remember my recent posts about my non-pandas child. Rage, ADHD, ODD behavior.
     
    The first round of blood work has arrived.
     
    He is SEVERELY allergic to Casein, Whey, Gliadin. Moderately/High to eggs, and gluten.
     
    When I google symptoms with regards to these specific allergies the symptoms are: Irritablitly, Cognitive disfunction, anti-social behaviors.
     
    Now, most people would not be thrilled to discover that their child has these challenging allergies, I AM THRILLED.
     
    I feel like I am on the right track...
     
    Just have to figure out how you make cookies without eggs!!!
     
    Thought I would share with my internet family....you all would understand my joy more then others.
     
    q
  8. Like
    JuliaFaith reacted to JDuffner in Cannaboid OIl-RESULTS!   
    http://www.medicaljane.com/2014/05/28/study-cannabidiol-cbd-may-help-treat-social-anxiety-disorder/
     
    CBD in cannabis which is what is being used in Charlottes web on kids in Colorado is not the same as Hemp CBD. It is also not psychoactive, yet has small amounts of THC and can upset the stomach. dosing should be slow and organic tinctures only but it works
     
    http://steephilllab.com/thcv-the-sports-car-of-cannabinoids/
     
    there are over 80 cannibinoids in the cannabis plants being isolated for a variety of medical uses.
     
    http://patients4medicalmarijuana.wordpress.com/medical-use-of-cannabis-video/marijuana-tincture/
     
    http://www.mtgseeds.com/about/
     
    http://www.medicaljane.com/2013/11/25/unconventional-foundation-for-autism-advocates-for-families/
     
     
  9. Like
    JuliaFaith reacted to rowingmom in Cannaboid OIl-RESULTS!   
    You are properly addressing any methylation difficulties and using detox strategies, right?
  10. Like
    JuliaFaith reacted to rowingmom in Cannaboid OIl-RESULTS!   
    I had the same results within 20 minutes of a double dose of Japanese knotweed, although ticcing was not involved at that time - this was last summer. Just crying, frustration, talking back, general nastiness. All gone in 20 minutes.
     
    Japanese knotweed is an anti-inflammatory, so just wondering whether CBD was acting in this case as an anti-inflammatory.
  11. Like
    JuliaFaith reacted to cara615 in BRAVO probiotic. We are starting it...   
    The probiotic is a yogurt once its all made. It tastes exactly like plain greek yogurt but a littl emore liquid consistency. I put a teaspoon of it into applesauce (you have to start very slow) and mix it up. Both my kids take it and actually like it.
     
    As for other probiotics, they do not work nearly as well. The BRAVO has been a game changer and i think its because of the GcMAF which is in there. The GcMAF activates macrophages which eat viruses and bacteria. The BRAVO is creating a whole new gut biome for him.
     
    So since his tics were primary from the clostridia and gut dysbiosis then the BRAVO is what he needed. So no matter the symptoms, if they are because of an unhealthy gut, this probiotic would help for sure.
     
    They also came out with a 24/hr process instead of the 3 day process and its $300 Euros for a 3 month supply. Much cheaper than the $860 I paid for a 3 month supply. They say its the same exact thing once its all fermented into a yogurt.
     
    i hope this answers your questions!!
  12. Like
    JuliaFaith reacted to mama2alex in Hashimoto's Encephalopathy?   
    If he is 15, then he was vaccinated before the CDC ever announced they were going to phase out the multi-dose vials which contained Thimerosal (mercury). Once they announced in 1999, they did not recall the mercury containing vaccines, but used them up and phased them out over several years. The last of the mercury containing vaccines expired in 2003. Even now, there are still trace amounts in some vaccines and the full amount in the flu shot (unless you ask for the singe dose vial).
     
    You can't determine mercury toxicity through a blood test. You need to do a "challenge," which means giving the person a medicine that binds with heavy metals, such as DMSA or DMPS, and then testing the urine. If there are methylation problems, even this test isn't accurate. The methylation defects need to be resolved with supplementation before testing.
     
    If you decide to do the urine challenge, most DAN! docs know the right way to do it. I do think it's worth investigating further.
  13. Like
    JuliaFaith reacted to LindaMW in Something positive   
    Even though my son is far from getting better, dealing with lyme and activitly treating, and he feels horrible most of the time, his fellow baseball team nomiated him to play in their all-star game. No one on the team knows about him having lyme or Pandas. I know this will make him feel so good and he really needs that right now.
     
    We really need to celebrate the little moments for our children who spend most of their time suffering. Hopefully it will be a good day for him so he can enjoy his moment. Just wanted to share.
     
    Thanks for being an awesome support board.
  14. Like
    JuliaFaith reacted to cara615 in BRAVO probiotic. We are starting it...   
    OK i have been afraid to type it but this is the 3rd day in a row where his tics are the lowest I have seen since last October or before. Dare I say it, but BRAVO is WORKING.
     
     
    Now my son's biggest issue is his gut health. i know from a recent OAT test that he had yeast, clostridia and tons of bad bacteria. The clostridia and yeast were most likely the cause of his most recent ticcing especially since his strep titres are finally back to normal. He also tested neg for MycoP, EBV and Lyme.
     
    So for anyone that is in a similar situation with their child and can't seem to get the gut back in order, BRAVO seems like a real option. I can't believe how powerful this stuff is. I have only been giving him 1/4 - 1/2 tsp 2x a day.
     
    Since its a milk based probiotic i was nervous about giving it to him since he is dairy free but that does not seem to affect him at all. Its more about the good bacteria and the GcMAF that in this stuff.
     
    i am very hopeful about this.
     
    DS is doing very very well right now.
  15. Like
    JuliaFaith reacted to MomWithOCDSon in 23andMe testing   
    Well, LLM, you're not your "average" parent, so even if the tests only serve to confirm what you've suspected all along or even knew, given your smarty-pants-research-and-research-some-more tendencies, I hope you feel validated! Maybe even vindicated, in some respects?!
     
    Seriously, you're miles ahead of me on all this stuff, and I'm continually impressed by your resourcefulness and resolve! You must promise to write a book when you have this all sorted out, and I'll be happy to shove it under the noses of every doctor who's raised an eyebrow at me in that "Do you believe everything you read on the internet?," superior way!
     
    Power to the Persistent Parents! :wub:
  16. Like
    JuliaFaith reacted to cara615 in BRAVO probiotic. We are starting it...   
    So I spoke to Bradstreet about how to handle abx. He wants to keep DS on them for at least a month of the BRAVO. Apparently the GcMAF in the BRAVO will help even with the abx in his system. I still give the BRAVO in the middle of the day and at night as far away from the abx as possible.
     
    From what i have exeprienced, ds still needs the abx because everytime i try to wean him, the tics become constant. When I put him back up to recommended dose, the tics become very mild. Its crazy and I hate it but if he needs it to keep inflammation down then so be it. Abx works better than ENHANSA at controlling inflammation (at least for us).
     
    Right now we are only on week 1 of BRAVO and I can't say that its been a miracle, but it hasn't made anything worse so that is a good thing!!
     
    We will do a repeat OAT in a month to see how his gut has fared so far.
     
    right now tics are a 3 on a scale of 1-10 with 10 being the worst. He also does not have any behaviors. I think we are in an OK place.
  17. Like
    JuliaFaith reacted to rowingmom in Layers: one found   
    Nice!
     
    Please consider also that it may not only be the elimination of the offending proteins that's causing the improvement, but also the elimination of the high levels of glyphosate commonly used on and found in these items that is allowing the gut and it's microbiome to heal.
     
    Glyphosate is sprayed on fields before planting, again at high rates on GMO grains to rid the fields of weeds, and again before harvest to accelerate seed drying. Glyphosate is also used as a desiccant for non-GMO grains and legumes.
     
    GMOs have been developed, not to increase crop yield or nutrient value, but to enable plants to withstand the larger amounts of glyphosate needed to combat weed resistance.
     
    Conventional dairy/beef/pork/poultry producers feed animals GMO grains extensively. Glyphosate residue bioaccumulates, especially in fatty tissue and dairy fat.
     
    The only way to insure that you are not eating glyphosate is to buy organic.
     
    Glyphosate’s Suppression of Cytochrome P450 Enzymes and Amino Acid Biosynthesis by the Gut Microbiome: Pathways to Modern Diseases
     
    http://www.mdpi.com/1099-4300/15/4/1416
     
    Glyphosate, the active ingredient in Roundup®, is the most popular herbicide used worldwide. The industry asserts it is minimally toxic to humans, but here we argue otherwise. Residues are found in the main foods of the Western diet, comprised primarily of sugar, corn, soy and wheat. Glyphosate's inhibition of cytochrome P450 (CYP) enzymes is an overlooked component of its toxicity to mammals. CYP enzymes play crucial roles in biology, one of which is to detoxify xenobiotics. Thus, glyphosate enhances the damaging effects of other food borne chemical residues and environmental toxins. Negative impact on the body is insidious and manifests slowly over time as inflammation damages cellular systems throughout the body. Here, we show how interference with CYP enzymes acts synergistically with disruption of the biosynthesis of aromatic amino acids by gut bacteria, as well as impairment in serum sulfate transport.
  18. Like
    JuliaFaith reacted to cara615 in BRAVO probiotic. We are starting it...   
    Day 3 on BRAVO probiotic: The first day we say increased tics and even new ones emerge! the 2nd day all the new tics disappeared and we were just left with is head jerks and a couple of vocals. However they were few and far between. Lowest I have seen in a while. So I decided to give him another 1/4 tsp at night to let the good bacteria have lots of time to grow. Today is day three and tics are LOW. They are still there, but LOW.
     
    I am taking BRAVO and so is my other son. I am giving it to my whole family. I am hoping to help out my IBS and clear up my other son's gut as I think he may have dysbiosis as well. (He is NON-PANDAS though).
     
    I hate writing all this stuff because every time I do, things go downhill right after. But I am praying for healing and to get off the abx so optimal healing can occurr.
     
    Slowly, i am reducing his augmentin every couple of days. I'll will keep you all posted on our progress.
  19. Like
    JuliaFaith got a reaction from 3bmom in GMOs effect on Pigs ,New Research from Australia   
    This is great information! Thank you for sharing.
     
    Recently heard a radio host (Hartman) talk about the "vote with your money" dilemma in that big corporations own almost everything so that is difficult to do any more.
     
    The below quotes were particularly interesting:
     
    "The two main things that we were looking at here and the two main things that Howard Vlieger flagged as a problemas things that he was seeing in livestock, particularly in pigswere both things we found statistical significance for: (1) digestive health problems, particularly inflammation in the stomach, and also (2) reproductive issues. In this case, we've found this increased uterus weight," she says.
     
    The industry immediately went on the offensive. Then, in what appears to have been a last ditch effort to get rid of this stubbornly incriminating study, the publisher (Elsevier) simply retracted it, for no other reason than its findings were deemed to be inconclusive. The thing is, inconclusiveness of findings is not a valid ground for retraction... Elsevier's actions caused a major backlash, and has undoubtedly opened more than a few eyes to the reality of censorship of "unwanted" research. Even the National Institutes for Health (NIH) scolded Elsevier in an editorial titled: "Inconclusive Findings: Now You See Them, Now You Don't!"
  20. Like
    JuliaFaith reacted to JuliaFaith in Never thought Strep was an Issue---it may have been.   
    We are using 'Chlorhexidine' as a swish and spit 2xday. Ds swishes for minimum 30 seconds. Best to do after eating and before bed so it stays in mouth.
     
    The reasoning behind the xylitol gum is that it is on the mouth for so long. Other rinses may not have as much effect per doctor.
     
    Jenniferg-- Azith abx did not kill the strep which tested positive and is the same kind as you find in throat.
  21. Like
    JuliaFaith got a reaction from JenniferG in Never thought Strep was an Issue---it may have been.   
    jenniferg--My son was on Azith for 1 month before testing positive for the strep in mouth, hence the mouthwash.
  22. Like
    JuliaFaith reacted to LNN in Went to see a naturopath, getting tested for Lyme   
    I too tried a few homeopathic remedies with no changes one way or the other and also struggle to wrap my science brain around. Yet I do respect those who feel it's been helpful and I have a lot of respect for the homeopath who shares a practice with our LLMD. I've never found any harm in trying it. (except for the $).
     
    I was in your same boat - exhausted the strep treatments (abx, steroids, T&A, Plasmapheresis and IVIG) and finally relented and tested for lyme (which yielded 5 positive/indeterminate bands). So we did lyme treatment and again hit a wall. Then DS tested positive for KPU/pyroluria. Treatment moved him forward until he hit another wall. Deep sigh, lots of swearing, lots more eye rolling from DH, then found mold sensitivity. Got vigilant about that (without spending tons of money thankfully). DS progressed again. Got glasses for convergence insufficiency and made academic gains. Methylation supplements finally got us that elusive final recovery.
     
    Gosh, i sound like a nut job with munchausens - or like maybe dx'ing issues was a hobby. Happy to say we seem to be "done" with our issues collection. But what I learned from all of it is that Pandas may actually be the final straw after a long period of teetering with other health issues. Or...it may be only the tip of the ice berg, making the body vulnerable to other insults. Chicken/egg question I suppose. But either way, having an autoimmune response to an infection and not being able to recovery entirely might mean there are other issues contributing. So it makes sense to test for other things.
     
    So if he's negative for lyme, then what? Oh, don't worry - there's a long list of other things to look for!
  23. Like
    JuliaFaith reacted to Kayanne in Cannaboid OIl-RESULTS!   
    This site has a lot of links about Hemp. I'm sorry I don't have time to go through them to see what is there but there may be some information that is helpful. I've been using bronner's soap, and I love it.
     
    https://www.drbronner.com/impact/activism/hemp/
     
    I'm also so glad everyone is seeing results. Please keep us posted. We're about ready to try an SSRI for the underlying anxiety, but I might consider this first.
  24. Like
    JuliaFaith reacted to qannie47 in Is This Our Medical Brick Wall?   
    I often find myself thinking, "My children, with their individual issues would have thrived so much better had they been born 50 years ago." I am not in denial that my children have issues that need to be addressed, but raising "imperfect" children in a society that has stolen childhood from children across the board has made it all much more stressful. It seems that children are no longer allowed to be children. You never see kids outside very much anymore. Everything about children's lives are so structured. The pressure to perform academically starts at age 3. In my area, academic material is about 2 to 3 years ahead grade levels from what I remember in school. Kids are no longer allowed to climb trees, ride there bikes around the block, get dirty, or free play for any great length of time. Summer Camps go by these kinds of names these days: Math Camp, Literacy Camp, Engineering Camp, etc.. Then there is the fear factor variable. Kids are being raised to be too afraid. One time, a neighbor came over, and politely asked, "Do you think it is wise to let your children climb over your fence? (the fence is about 4 feet high). I replied, "Didn't you ever climb a fence when you were growing up?". I could go on and on.
     
    I feel like society wants robots, not children.
     
    So, I not only feel sorry for my children, whom have to try to blend in with these new norms, I also feel sorry for the child whom came into this world without any special challenges.
     
    So when even a typical starts to exhibit stress cracks, society wants them medicated.
  25. Like
    JuliaFaith got a reaction from dcmom in Is This Our Medical Brick Wall?   
    3Bmom--Love your information and articles. Thank you for sharing. Personally, we have benefited from both side of the medical arena, however, some of what I learn about 'big pharma' makes me wonder where the 'best care of humans' seems to be missing from the equation.
     
    Worrieddadnmom--So sorry your insurance costs are so high, can totally relate. We have had both "obamacare" insurance and 'thru a job' insurance and the job insurance has been increasing at an alarming rate right along with the 'Obamacare'. Also, there are others in our area that have not been able to afford health insurance (and they work full time) and now can. This saves us (as taxpayers) a huge amount because these individuals would use the emergency room for health care before, which is obviously very costly. There are always two sides to these issues.
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