On Sunday Lydia had 16 seizures. On Monday she had 12. Today is day three. Even if this quiet streak ends and she goes back to over 60 seizures a day, this reprieve has been amazing. The plant from the gods! She has had at least a 70% reduction in seizures the last couple days thanks to the oil.
I didn’t believe it could happen for her. We’ve been working with MX:BIOTECH out of Eugene and have been giving her different micro-doses of cannabis oil. After the first few batches (each made of 3-5 different strains) had no effect on her seizures, I had quietly given up hope. But we went on. Each time we met with Troy Morris, he gave us just that little bit of encouragement and we kept trying. We figured we could at least be confident in ruling out cannabis and we could help Troy in his research. Then along came ‘Cohort H’. Lydia became really hot, really sleepy, and just sort of didn’t have dozens of seizures anymore. We are still reeling.
From here we need to work towards more and more dilutions of the oil until she has no side-effects (the sleepiness), yet retains the seizure reduction. Troy said he’s never seen anyone need to ‘be high’ in order to have it work, although she’s an outlier so we are watching for that possibility. The photo above is from just before we started Cohort H, her eyes have barely been open since we started. She’s a bit angry when she’s awake. Super sluggish and immobilized. We’re hoping we can get the dose down and keep her seizure-reduced yet more alert. The crazy thing is her dose has only been one drop every 8 hours. One drop. Really. One. I gave her a drop this morning that was five times diluted and she still isn’t opening her eyes. I will dilute some more and try again tonight…
Talk about a Christmas present. It is the only thing I’ve wanted every day with every particle of my being for nearly two years. A miracle.
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Lydia Unicorn 
She may be so sleepy because her body is healing. Give it time. She will adjust to dosage and it shouldn’t impair her soon. Try some citicholine to reduce psychotropic affect.
Can’t get an easy link on Dr. Sherman’s article. I’ll put it in the mail for you. Hugs, Kate
Such happy news! So glad you guys have been persistent in looking for alternatives. One day alternative treatments will get more respect. Oregon is an amazing place when it comes to being practical about things. I’ll be watching expectantly for the 2015 results you want.
On the “outlier” side, don’t know if you have looked at recent changes in the availability of some old pesticides, known commonly as Dursban and Lorsban. They have now been linked with prenatal neurological damage. Some kids have a genetic predisposition of up to a factor of 50 in being affected by them. They have been common for use in lawn applications and bug killers in yards, homes and soils. They are being taken off of the market. You can do blood tests to look for breakdown agents. These agents can persist for many years in the soil and body. Look at “Warning Signs” in The Nation, and the work of a toxicology MD who has been looking at this stuff. Her website is janetteherman.com
Our yards have histories of chemical use that we don’t know anything about, unfortunately. Air drift is a big problem too. When will this country learn to get off of poisons? Kate
Try administering it rectally. This should eliminate the side effects and be more effective overall.
Reblogged this on seizinghopedotcom.
That is Wonderful News! I’m so happy for you all.
I let out a small scream of delight when I saw your headline in my news feed. I am sending all the positive thoughts I can your way that the seizures stay away and you find a dose that works for Lydia. This is such lovely news. I’ll be thinking of you this Christmas!!!
So happy for you and your sweet pea!!! I’m glad it is working!!
Hurray!!! She must be enjoying every moment of that rest. Send lots of good thoughts and wishes to find that perfect dose.
Hope is a wonderful thing. Here’s hoping you find the exact perfect dose for her.
That is amazing! So so so happy for Lydia and your family! Never give up!
I am so happy that I feel like I could never be sad about anything ever again. I am going to have to give you a call. I just think, wow, for the first time in her life, she’s not having a storm rage in her brain! I’d sleep too.