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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!

  • 6 months later...

It's been a few months since this thread was last posted to. I was wondering if those of you using CBD oil are still using it? And how's it going?

 

Doing my research. It seems CBD is like a magic oil, it helps Lyme, PANDAS/PANS, other autoimmune, anti-inflammatory, etc etc etc....

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I am wondeing if it works on intrusive thoughts too???? The OCD here is bad but not as debilitating as the bombarding thoughts that keep just staring at a computer or having to listen to loud music with head phones to calm them. It's horrible and I am not able to find anything to help!!!

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We still use it, but not as frequently since we are not in a really bad or horrible place right now. Mainly, we use it as needed for when kiddo gets upset.

 

Trinity:

 

I have intrusive thoughts, but have never tried CBD oil. I manage to afford things for kiddo I simply cannot rationalize for myself. What I do take for mine is Cymbalta (SSNRI) and it seems to help quite a bit. Of course, I do not have PANDAS and my brain is fully developed, so no limitations for either there.

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We stopped, weren't seeing enough of a result. However, DH decided to try it for when he's super anxious, and it helps him. :)

 

ds15 is on very low dose of Anafranil now.

 

And we did IVIG in March 2015, now seeing more consistent results 3 months post, plus the addition of the Anafranil.

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  • 1 month later...

DD's doctor recommend cbd oil and said some of her other pandas patients were taking it. I started looking for it and couldn't find any online.

 

So first let me clearify what I'm loozing for. I want the cbd from Marijuana without the thc drug in it. Which is what writers are parroting from researchers that have all the benifits. Hemp is the alternative and the cbd from it is legal in all 50 states. The cbd from the Marijuana is illegal in to ship in all 50 states because of federal law. State laws state laws for medical use are OK but are still illegal to ship. The manufactures claiming it's legal, are using an alternative cbd and not the cannabinoids we are looking for. You might be able to find it in a local shop for pickup.

 

Here are two links:

http://www.drugpolicy.org/blog/are-websites-claim-ship-cbd-oil-non-medical-marijuana-states-legit

 

http://www.leafscience.com/2014/02/23/5-must-know-facts-cannabidiol-cbd/

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I'm not really an avid fan of government agencies because people behind policy making can be just as corrupt as schemers by using its power and insider knowledge about investing in products while shutting down compitition however, while there may be other motives for shutting down manufactures, they do weed out the get rich fake products.

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My DS15 tried CBD capsules this week for the first time. 25 mg capsules 4x a day. This was prescribed by his doc in addition to one LDN capsule at night. We were trying these to help taper him off the prednisone. When he started a prednisone taper 2.5 weeks ago he had amazing results and was almost symptom free within 24 hours. We had 10 blissful days symptom free. I got my child back! Once his dose was cut by 60% most of his symptoms came back. We increased his prednisone a little bit to stabilize him again which worked. But We then added the CBD and LDN to see if we could taper the predinsone more. In the last 5 days since starting the CBD and LDN he is much worse. He has been extremely tired and nauseous and light headed. His anxiety has been off the charts again (his worst PANDAS symptom). Today I cut the CBD and will not give him the LDN. The two do not seem to have helped at all. We are just trying to wait this out as his doctor is working with our insurance to get IVIG approved. I gave him another 5mg of prednisone today but I have seen no improvement but he does not seem as tired and no nausea or light headed.

Has anyone had these results with CBD or LDN? I think I read if you have a CBS mutation that CBD may not be a good option because of the sulpha in it? I would love some feedback. Thanks!!

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My DS15 tried CBD capsules this week for the first time. 25 mg capsules 4x a day. This was prescribed by his doc in addition to one LDN capsule at night. We were trying these to help taper him off the prednisone. When he started a prednisone taper 2.5 weeks ago he had amazing results and was almost symptom free within 24 hours. We had 10 blissful days symptom free. I got my child back! Once his dose was cut by 60% most of his symptoms came back. We increased his prednisone a little bit to stabilize him again which worked. But We then added the CBD and LDN to see if we could taper the predinsone more. In the last 5 days since starting the CBD and LDN he is much worse. He has been extremely tired and nauseous and light headed. His anxiety has been off the charts again (his worst PANDAS symptom). Today I cut the CBD and will not give him the LDN. The two do not seem to have helped at all. We are just trying to wait this out as his doctor is working with our insurance to get IVIG approved. I gave him another 5mg of prednisone today but I have seen no improvement but he does not seem as tired and no nausea or light headed.

Has anyone had these results with CBD or LDN? I think I read if you have a CBS mutation that CBD may not be a good option because of the sulpha in it? I would love some feedback. Thanks!!

 

We have never tried LDN or the capsule version of CBD. Kiddo tolerates the oil very well and it helps her virtually every time we use it. Sometimes it is not enough to completely reduce her anxiety, but it still helps.

 

Prednisone also gets my kiddo back to almost 100%, but we only use a taper of it as a last resort when she stops eating. She is already immune comprimised (low IgG and IgA), so I try to stay away from it as much as possible.

Edited by mayzoo
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We think CBD has helped my daughter currently in a flare. She has taken CBD 2x daily for about two weeks and we have observed an improvement in OCD and anxiety - a calmer house. She doesnt think it has helped her but her ability and desire to verbalize emotions is poor during a flare.

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I checked with DD's doctor and she said they special order from cbdplus and an independent checks the ordered percentages of the batches to insure quality. DW has experience with extracting oil from the plants and I was considering sourcing the plant strain without the thc however the only reason to do it would be for savings. It cost $140 for 2 bottles which would last 16 days. If it ends up being a magic pill, I will revisit the thought.

Edited by 4nikki
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