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Words I never thought I would be saying again, I have said three times in the last two days :D.

 

"Honey, please turn the TV down."

 

She has been listening to it so low that I could not understand most of what was said (and I am midly sound sensitive). She has required subtitles for some time now, and part of that is due to a love of reading and part may be she cannot really understand every either at the low levels she must listen to it at. She has been watching the TV between 6-8 volume but now she is listening to it between 12-15. Too loud for me, but I am thrilled none the less.

 

How many parents are tickled pink to be telling their kiddos to turn something down :D.

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I haven't been here for a while, but wanted to share that yesterday (yes, only yesterday) we made some progress. DS15 who suffers with severe OCD, is homebound, wont bathe in a shower or change clothi

Update. DS went out last Thursday. Walked to his friend's house and the mother vetoed the subway (ahh, the irony). So I drove them and they popped out of the car and walked around for a couple of hour

Snake oil, hemp oil, who cares as long as it works!

T, I am incredibly excited for you and DS!

 

HAPPY BELATED BIRTHDAY TO HIM! :D

 

I know you started on Cellcept and i have been out of the loop, but with DD16, it took her almost six months to see results which ended up being fairly significant. Devil's advocate here, but how do you know it's the oil and not Cellcept, IVIG, etc.?

 

Thrilled!

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  • 2 weeks later...

My kiddo is still doing well on this. It is not a miracle, but it is definitely helping. Today, we are in a minor flare/herxing (started an antiviral protocol). We have a party planned for this weekend that kiddo has been looking forward for over a month. I thought I would try almost a double dose (25 drops) of the CBD oil to see if it helped her. She was laying on the couch crying, upset, and her vocal tic was in full force. About 15-20 min after the dose, she is sitting upright and walking around some, playing on her Galaxy tablet, and the vocal tic is gone. She is smiling, and doing very well right now.

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My kiddo is still doing well on this. It is not a miracle, but it is definitely helping. Today, we are in a minor flare/herxing (started an antiviral protocol). We have a party planned for this weekend that kiddo has been looking forward for over a month. I thought I would try almost a double dose (25 drops) of the CBD oil to see if it helped her. She was laying on the couch crying, upset, and her vocal tic was in full force. About 15-20 min after the dose, she is sitting upright and walking around some, playing on her Galaxy tablet, and the vocal tic is gone. She is smiling, and doing very well right now.

 

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.

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Rowingmom--Great to hear about the Japanese knotweed! Found this article (study on mice by the government) that may answer your questions on CBD:

 

http://www.cancer.gov/cancertopics/pdq/cam/cannabis/healthprofessional/page4

 

"Cannabinoids may also contribute to pain modulation through an anti-inflammatory mechanism; a CB2 effect with cannabinoids acting on mast cell receptors to attenuate the release of inflammatory agents, such as histamine and serotonin, and on keratinocytes to enhance the release of analgesic opioids has been described.[35-37] "

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She is still doing pretty well right now. I am thrilled since I have tried numerous items to pull her out of what she calls "the upsets". I have tried various herbal "stress" remedies, herbal "sleep" remedies, melatonin, motrin, benadryl, extra dose of curcumin, naps, Klonopin, all the way up to Zyprexa. Some make her sleepy enough to rest, but then the upsets are back when she wakes up. The rest seemingly do little to help.

 

So far, CBD oil has been a "magic" bullet for the "upsets." Time will tell how long or how often this can pull her out of the "upsets."

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Asked our MD about the CBD and she said that some do not see results until 2 months down the road (but said "try it!"). Our ND also recommended that we try it. Both said that it can help the 'brain to heal.'

 

We are trying some from a private source. Waiting to see how it goes. Went up to 4 drops 2xday at one point but I believe it was making ds feel too sleepy. He thought he was starting to feel like the beginning of PANS (scary). Now we are down to 2 drops 2xday (this source is much stronger than the Bluebird company). His appetite had increased a lot but now seems to be slowing down a bit.

 

Definitely a paradoxical shift in thinking. :)

Edited by juliafaith
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Well the party was loud and a success. We had about 40 people here.

 

I had to track my kiddo down ALL day and evening long. She did not hang with me at all! She was outside most the day following the other kids around and trying to participate with what they were doing, including badminton. She sat on people's laps and generally socialized (in her way) with lots of people. I was told by numerous people how much better she did this party as opposed to last year. She watched the fireworks show, not even sitting with me, and was excited and happy the whole time. Not one incidence of upsets all day, and she never put in her earplugs during the fireworks.

 

This stuff is expensive, but it is still a winner in my book.

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I am so happy for you T Anna and mayzoo, and anyone else who has found some success! (sorry I'm having to skim read quickly). We are seeing a naturopath this week since conventional medicine has us at a stand still and DS is flaring REALLY badly right now. :(

 

I am keeping an eye on this thread. :)

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My friend wants me to try this because I'm completely out of options, literally. However, he's getting side effects from it. People with M.E. / CFS tend to be SO sensitive to medication and supplements and vitamins, at tiny doses we seem to be getting overdose and everything I've ever tried has made me incredibly sick, so I'm scared to try. He is doing one drop a day and said it's making him extremely lethargic and lately he's had crushing depression he attributes to it. So I am worried about a reaction to the stuff, but have no other options.

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My friend wants me to try this because I'm completely out of options, literally. However, he's getting side effects from it. People with M.E. / CFS tend to be SO sensitive to medication and supplements and vitamins, at tiny doses we seem to be getting overdose and everything I've ever tried has made me incredibly sick, so I'm scared to try. He is doing one drop a day and said it's making him extremely lethargic and lately he's had crushing depression he attributes to it. So I am worried about a reaction to the stuff, but have no other options.

 

You are properly addressing any methylation difficulties and using detox strategies, right?

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I'm very excited to see some having progress with this. We tried it on our dd, she's 22, PANDAS/PANS, extreme anxiety, OCD, intrusive thoughts, eating disorder. It did not work for her. She used it for 2 weeks. It would be interesting to find out why it works for some and not others.

 

That being said, although dd did not benefit, I gave some to our son - only around 2 doses. I don't think I'm crazy (well, that is debatable!), but I thought he seemed to stand straighter and seem more "with it." He has a somewhat awkward gait, leaning forward at the shoulders, head foreword, and often has the masked face look. He was diagnosed with auditory processing disorder as a kid, but Dr. K was around him a bit when daughter had IVIG, and Dr. K commented that son seemed to have PANDAS symptoms. His symptoms are very ASD in nature, as well. We've just had our hands full trying to care for dd - so son has not gotten the same attention concerning medical things. But it was significant enough (with the CBD hemp oil) that I went ahead and ordered a bottle for him. Should get it this week.

 

Price went up on the oil. Husband, as usual is thrilled with the expenses. ;)

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