Pretty much what the title says! I've gotten a lot of inboxes asking for an ama so here I am to answer any questions

Comments: 63 • Responses: 17  • Date: 

two_off13 karma

How does it help her?

mtmew22 karma

It controls all of her seizures. We tried everything. Nothing worked and she was sent home to die 2 years ago. We took a chance on the oil and it worked! It also normalized her eeg

Darsint10 karma

Are you staying at one of the legalized states right now?

mtmew20 karma

I'm actually in Canada. It is legal for medicinal use federally. However my province came out with new guidelines and her prescribing dr (pediatric neurologist) could no longer sign. So now....we fly halfway across the country for a signature.

LouisXIV_7 karma

What was the supposed justification for not renewing the license?

mtmew12 karma

Change in policy. He wanted her to continue to use it though..... it was a bit of a battle between him and I because policy didn't strictly prohibit it rather advised against under 25. I released all of the emails between him and I to the media after a while. He was not pleased, then again, neither was I so...

Heptite5 karma

Are you worried that this will make it less likely other doctors will take on this case?

mtmew6 karma

It was a nightmare trying to find a signing doctor. It won't happen in Alberta (where I am). No one would even look at her files. A rational Dr in Ontario agreed to at least go through her records. Once he reviewed them he agreed it was a no brainer. She needs the oil and will sign. We fly out on Monday v

FKRMunkiBoi4 karma

I released all of the emails between him and I to the media after a while.

It was a nightmare trying to find a signing doctor. ... No one would even look at her files.

I can see why it would be difficult to have another doctor choose to correspond with you after you released the previous doctor's correspondence publicly.

mtmew2 karma

It was the right thing to do even if it made my life more difficult. That's not even why though. The emails were not the main issue. ...more to back what I was saying because the hospital was saying I was lying. I had proof that I wasnt. Drs wont take on a ped cannabis patient. They may prescribe a long time patient but they wont take one on in this province.

valdus4 karma

My sister-in-law in Alberta is having this issue as well. My niece has Dravet's Syndrome. Meds rarely worked and caused more problems than they solved. While other Dravet's parents are finding success with marijuana, she can't get it. Luckily for her, she is about to turn 18 so they can get around that... glad you found a way to not have to wait so long! Having spent a few years in the house with her, I know what it is like...

mtmew1 karma

The people at the 420 clinic may be able to help her. Has she even tried it,

NeedsAdditionalNames2 karma

Did you ask his permission before publishing correspondence?

mtmew2 karma

No but I spoke with my step sister who is a lawyer. Emails aren't protected.

NeedsAdditionalNames5 karma

Perhaps not protected but would sever any trust in the relationship without discussing it first.

mtmew2 karma

Well with the way the conversation went, the trust on my end was severed anyway. But I do understand what you are saying.

deadoralivee7 karma

If you don't mind me asking, how old is your daughter? What kind of oil are you using for her? Do you always use the same kind or do you alternate between a few? I'm unfamiliar with your story so if you could give a little more background that'd be appreciated. Is she old enough to understand what she's taking or is it just "the magical stuff that makes me better when I take it"? I hope nothing but the best for her and you're family and sorry you had to go through such drastic measures for something so helpful.

mtmew11 karma

She takes an oil made from nordle and one from Jack Herer. She doesnt have the mental capacity to understand that shes even getting meds for her seizures I don't think. She is 9 but severely disabled.

NeedsAdditionalNames5 karma

Thanks for the AMA. A few questions:

Would you mind sharing your daughter's precise diagnosis?

Was surgery a consideration for the intractable seizures?

Which drugs can you recall being tried in the past?

Best of luck with your daughter. Hope she does well.

mtmew5 karma

She has ohtahara syndrome. My god we've tried phenobarbital, phenytoin (that caused acute liver failure), topirimite, sabril, ativan, keppra, valproic, carbamazepine, lamictal, fospheny, midazolam, diastat, ketamine, propofol...I know I'm forgetting some. Oh and keto and IVIg! Surgery was never an option unfortunately as they came from every area in her brain.

bozobozo4 karma

What is your favorite dinosaur?

mtmew5 karma

It's always been triceratops. Probably because when I was a child I thought it waa named after a girl named Sarah....and Im a Sarah too.

barnacledoor2 karma

Would you consider moving to a location where marijuana was legalized (or is it decriminalized) like Colorado or Washington in the US or are there other tradeoffs that make this not a viable option? Have you investigated other options within your area? I could imagine this would be a relatively easy thing to get elsewhere with the right contacts.

mtmew4 karma

She's been using it for two years exclusively and legally. So I have met enough people that it would be fairly easy to get I just want her legal (quarterly or yearly signature). If I had to move, I would. Although I believe now we're good even if I have to fly down to Ontario every few months.

barnacledoor5 karma

it is maddening that stuff like this is allowed to happen. marijuana is safer than so many other prescription drugs, yet you could likely find someone to prescribe any of that other shit without a problem.

i'm glad to hear that you've been able to sort this out. i can say that in that situation, i'd do anything to get what i need. i'd grow it. i'd find some way to get it prescribed to me instead of my child. i'd have no problem with breaking laws to get it either, though obviously some laws are much stricter and much more risky. no trying to smuggle it over from the US. :)

good luck to you and your family.

mtmew2 karma

Thank you!

Eskaminagaga1 karma

Are you using non-THC cannabid oil? How is it being administered?

mtmew2 karma

She actually gets the thc. Cbd only caused myoclonic jerks for her but with the added thc we achieved seizure control.

iphoneluver1 karma

Before your daughter was prescribed medical marijuana, what were your views about legalization of the drug recreationally and medically? And what are your views now?

mtmew2 karma

I've always been pro legalization although never really fought for it per se. I just think that adults can choose what they feel is right for their body. Now that I am more aware of the benefits and how benign it really is as a recreational substance I find it absolutely bizarre that it is a criminal offence to enjoy a plant.

iphoneluver1 karma

As to not get too political or turn this into a history lesson in short the reason pot is illegal is because of the hemp industry and how many other major cash crops it would put out of business (mostly logging, cotton, coal, and it would put a severe dent in the chemical industry as well)

mtmew1 karma

Oh I understand why it's illegal. I just think it's complete bullshit to be honest.

XLBananaHamock-49 karma

God your English is fucking terrible. Your title should read "IAMA mom/mother whose child...." Is English your first language? If not where are you from? I haven't heard if your story so why does your daughter require pot?

Edit: pretty stoked this is getting so much hate :)

Edit2: I hope the down votes reach the thousands!

mtmew21 karma

English is my first language. Quite frankly I don't know what happened in the title. Not enough coffee before braining perhaps? Really no need to be a colossal asshole. I guess things like that bothered me too before I finished puberty.

Since you're either young or behave that way, I'll give you a lesson. Read the entire description, including clicking the newslink I provided you arrogant twat.