I am successfully using medical cannabis to control my daughters severe seizure disorder AMA!

http://www.ctvnews.ca/video?clipId=318412

http://youtu.be/2gJDPwDwDZI

A picture of me first thing in the morning proving I am who I say I am! http://imgur.com/ZtqbMXa

Edit 10 hours later: Ok guys I am only putting this out here because people have pm'd me for it and its been such an awesome supportive ama. This is her fundraising account. Donate, don't donate......whatever. I am about bringing awareness. I WILL get the ten grand but the awareness is THE most important thing.

http://www.gofundme.com/7q8sww

Comments: 455 • Responses: 120  • Date: 

3AlarmLampscooter61 karma

What other meds did you try previously?

Is she currently on any others?

mtmew84 karma

We were able to wean all medication. She has been on phenobarb, phenytoin, fosphenytoin, vigabatrin, clonazepam, clobazam (onfi), midazolam, ativan, topiramite, keppra, tegretol, lamictal, ketamine.... I know Im forgetting some but a lot.

hayleymowayley142 karma

For those who don't know, the drugs listed above are pretty much every anti-epipleptic known to man, plus a horse tranquilliser.

mtmew91 karma

Am I a terrible parent for laughing at horse tranq? Because I did although it's not funny, it's just what she was on.

hayleymowayley67 karma

No, you are staying sane in the face of a very sad and difficult situation. Black humour helps us through, so laugh away!

mtmew46 karma

Sometimes, no most my humour gets very dark with this. It really does help me through!

SuperNinjaBot1 karma

Youre saying racism helps difficult situations? Shame.

mtmew1 karma

Sorry.

Phishlover8 karma

I'm actually very curious who prescribed the ketamine and to what result where they hoping . I've just never actually seen it prescribed to humans. Was it liquid for injections? Just asking that's the most common form I've seen used medically ? How much was she suppose to take at a time ?

mtmew6 karma

It was an infusion, so she was getting 1300mcgs/hr a day to stop her seizures and they mixed it with the 2400mcgs/hr of midaz to keep her in a fully suppressed coma.

floydpambrose38 karma

Ketamine is actually being used in humans more and more, from functioning as an antidepressant all the way to being included in compounded topical pain creams and ointments.

It's all fun and games until someone falls into a K-hole.

mtmew18 karma

Oh I understand but running 1300mcgs/hr over days plus 2400mcgs/hr of midaz for days cannot be good for an 8 year old.

purplewindex41 karma

Wow, those are some hardcore medications even for an adult. I'm glad this is working for her and she doesn't have to take these anymore!

mtmew36 karma

PREACH!

throwaway-popcans25 karma

its incredible that you could get your hands on ketamine before marijuana... the system is so fucked.

mtmew12 karma

certainly is!

emergent_properties19 karma

I am curious.. the moment you started giving medical marijuana.. how long until it started taking effect to eliminate/reduce seizures?

From 1 to 10, with 10 being immediate and complete temporary elimination of seizure and 1 being a placebo.. how effective was it?

Suppose the child is medicated for a long time, does it wean away and the seizures return?

Or is it as simple as 'while on MJ, only 4 seizures, period'?

mtmew61 karma

It was immediate. She went from hundred a day to 7 in 8 months.

emergent_properties40 karma

That would almost be my definition of a miracle drug.

I mean, I could understand and justify it being illegal for 3 decades if it wasn't shown that it did much of anything.. but it's like they didn't even TRY to study it. Just ban it without study because of.. god knows. What the heck?

Heaving_Bosom23 karma

That's exactly what they did. Primarily for socio-economic reasons, aka fucking greed (i.e. William Randolph Hurst), and rampant racism (e.g. "It's making all the darkies rape white women!)

mtmew15 karma

Thats actually quite true.

mtmew12 karma

It's definitely our miracle drug!

MizzleFoShizzle9 karma

I am glad you could wean her off the phenobarbital. That is rarely rx'd for seizure disorders in humans due to high toxicity. MMJ is a wonderful thing!

mtmew11 karma

Actually pheno in these kids is a first line drug! Insane.

titsmagee1353 karma

Do you find that using cannabis causes any negative effects on your daughter, and also would you recommend this to anyother mother in the same situation.

mtmew84 karma

At first she was a bit sleepy, other than that it really has only been positive. She's on a normal sleep schedule finally, seizures are well controlled, she developing... I can't complain.

titsmagee1331 karma

I personally find that cannabis deffinatly does help a good sleeping routine, and i hope all stays well for you in the future. cheers

mtmew22 karma

Thanks!

zacharywcox36 karma

Would you possibly be interested in interviewing for a podcast? 15, maybe 20 minutes of your time is all I need. I'm doing an Easter/4-20 episode, and my co-host and I would like to explore the legalities, benefits, and uses for marijuana. It would be greatly appreciated, and if not, thank you for coming to this forum and opening people's minds at least a little.

mtmew29 karma

Absolutely. Already did CTV national so why not?

HoochGoblin29 karma

Specifically what strain of marijuana do you use to help control her seizures and what intake method do you use. Do you use a vaporizer or is it some thing taken orally? And if you don't mind how much marijuana do you use in a month on her in one month? Last question I swear. How much marijuana do you use a month?

Edit: are you at all concerned about the long term effects that marijuana can have on the growing child's brain?

mtmew117 karma

I use both Jack herer and nordle. I make it into a coconut oil infusion. She is prescribed 5 grams a day, so about 150g/month.

She is severely disabled as you can see in the video so no I am not concerned about the effects of marijuana on her brain. In fact, she has started saying mum (getting a friend to convert that file, I have it on video). There are a few studies that suggest it does drop approximately 5 IQ points to a developing brain but lets be honest, these children are not going to become physicists. Its about quality of life.

HoochGoblin29 karma

I only asked about the brain damage that marijuana may inflict on developing brains because some parents don't seem to think about the long-term effects of having 200 something seizures a day on the brain versus just what medical marijuana. Would you mind if you have the time to go through a step-by-step process of how you make The coconut oil infusion which I assume is squirted into her mouth. I'm asking because I know there have to be people out there who don't know how to make a product like this for their child. if you could give your step-by-step instructions on here it could potentially help save another family a lot of time. And last but not least thank you for taking time out of your day to talk to us. You should do another AMA in a few years too.

mtmew42 karma

I sure can. You take the flowers. What I usually do is take say, an ounce and then 280mls of coconut oil. I make sure the oil is not hardened (warmed up). I break up the flowers and then decarb them in the oven for about 20-0 minutes on 220 (covered). Now its time to mix. I put the crushed decarbed flowers into a mason jar with the oil (again with the lid on). I put that into the crock pot. I fill the crock pot with water up to about the oil/cannabis line) I put the lid on the crock pot. I usually put it on high for an hour to get things going, take it out, shake it up and put it back in but this time on the warm setting. Its usually about twelve hours and every hour I take the mason jar out and give it a good shake.

One that is done I take a cheese cloth and strain in a bowl. I even use warm water to get all of the oil out (as much as possible). I put it in the fridge and it hardens quickly. I take it out and the water and oil are separated I discard the water and done!

HoochGoblin14 karma

Wow that's an awesome tutorial thanks!!

mtmew22 karma

anytime and its a legal infusion in Canada. Extractions (FECO) are illegal here).

carracerz144 karma

Fuck. That's more than I smoke. How expensive is it?

mtmew18 karma

Not under the mmar program. About 2/gram with a personal grower. Under the new mmpr program it will be 12/gram. I'll figure out a way to afford it. I have no other choice.

carlos_the_dwarf_13 karma

If you set up some kind of campaign online, Reddit types would probably help you out with some of that.

mtmew9 karma

I put it up in /r/donations but sometimes redditors think it's a money grab and..... well a fundraiser kind of is. I am doing my part though. I'm even bringing bottles back to the stinky bottle depot and that is SO a blue job (blue meaning boy....yes I'm a mom and I have blue and pink jobs in my house and I made them so I'm ok with them). That's not all I'm doing but bottle depots STINK.

myWeedAccountMaaaaan2 karma

Are there coops where you live?

mtmew2 karma

co-ops? Is there another word for what you are trying to say because I have no idea......

myWeedAccountMaaaaan2 karma

Yes ma'am. Sorry, I should have been more clear.

mtmew3 karma

Co-op is a grocery store here lol is that what you mean? Theres one around the corner from me.

SuperNinjaBot1 karma

I have never seen a study claiming anything like that. Where did you read it so I can track it down?

Every thing I have read have been cognitive benefits except anxiety.

mtmew1 karma

Let me find it, it came out of harvard last year or the year before and its ALL I hear about from the anti medicinal people.

usmcvetcaregiver28 karma

Medical greenery as well as prescribed THC pills have helped my veteran with a severe TBI control his Grand Mal seizures. He hasn't had one in over a year now! It also helps with his PTSD and Anxiety...I'm all for it! Glad to hear it helps your daughters seizures!

mtmew10 karma

I'm happy tp hear it's working!!!! Is he taking marinol?

bagofbuttholes3 karma

My friend took marinol for a while when she was diagnosed with aplastic anemia (im sure that's not the spelling) it was actually after her transplant that went bad and she developed graph v host. It helped a lot since she was taking so many other drugs. It made the last part of her life a little better. It sounds bad but I'm glad she died, she was in so much pain she was on a constant fentanyl supply and still just touching her was too much. Only 18... I miss her now.

mtmew6 karma

Marinol ia synthetic and doesn't seem to have the same effect but I'm glad it worked for her.

SuperNinjaBot5 karma

Also its just THC. Its not synthetic pot. There are a lot of other cannabinoids in there/other chems.

mtmew7 karma

You are correct, I assume people know this and I shouldn't.

SuperNinjaBot2 karma

The anxiety is a gray area. It causes a ton of anxiety in a lot of people.

mtmew3 karma

It really depends on the type and the strain. Definitely do your homework before using it for anxiety!

shimmyshimmyy24 karma

How long will she be on medical marijuana?

mtmew62 karma

Until I bury her or it stops working.

Gonad-Brained-Gimp29 karma

ouch :(

mtmew73 karma

It's reality.

karmanaut19 karma

Could you please provide some proof that you really are the person in those interviews?

The easiest thing would just be a picture of you holding a sign that says "/u/mtmew" so that users can compare the picture to the video. Thanks!

mtmew17 karma

With no makeup on ABSOLUTELY lol (also extensions are out lol).

karmanaut12 karma

I don't think redditors are concerned with your looks; we just want to make sure that it's really you! The problem with using publicly-available proof like this is that anyone can link to it. So, we need to have some link between the proof provided and your username.

mtmew18 karma

I know, it's done!

JeffBanks18 karma

What led you to the decision to use this?

Also, what does she act like when she's high?

mtmew37 karma

We were talking end of life care. This was our last option. She was in another med coma and I wasn't doing that to her anymore.

At first same as everyone else, she laughed a lot, dry mouth and was hungry. Now? She's back to her little attitude self just with no seizures!

JeffBanks11 karma

Oh alright, cool.

Are you continually using it on her? Also, do you tend to let people use this story in protests for people to legalize weed?

mtmew58 karma

She gets it twice a day like any other med she was previously on.

I am all for legalization but this isn't my fight. I'm fighting for the sick children whos Drs are too afraid to prescribe this because of all of the controversy surrounding it.

I don't care if people want to get high, but my focus is on the medical aspect of it.

SuperNinjaBot9 karma

Crazy how clearly you start to see the world and issues after having such a humbling experience.

mtmew5 karma

it really is!

Gonad-Brained-Gimp16 karma

What was the moment when you thought/realised "this works!"?

mtmew36 karma

I'm still waiting for the other shoe to drop but it's been 8 months. I cried. often. happy tears of course. The first time she said mum I called my husband freaking out bawling. He thought she was in ICU again, I just wanted to tell him she said mum, 3 times in a row. He was happy about it, buuuuut not so happy that I scared the shit out of him.

Edit: show to shoe

Gonad-Brained-Gimp13 karma

How old was she when she said her first words?

mtmew39 karma

Eight. Just a few months ago. It was THE BEST feeling as a mother.

Gonad-Brained-Gimp14 karma

That must be awesome! Do you feel like it's allowed her development to restart where it should have been all along? Have you noticed any other developmental increases?

mtmew25 karma

Self feeding, 3 words and she was eligible for surgery to fix her clubbed foot lengthen hamstrings etc, so she'll be in a walker.

Her development will never be normal and in fact I was ok with all of that so long as she was happy. Now shes happy AND not seizing which is pretty awesome.

Gonad-Brained-Gimp6 karma

Can anyone make a guess as to how the reduction of seizures/symptoms might affect her projected life span?

mtmew20 karma

NEWP! So I am prepared for the worst but relistically, I dont want to outlive her. It may sound morbid but who will take care of her like I do.

i have asked and the Drs only say "well with the reduction in status epilepticus and daily seizures her risk of passing from sudep are drastically reduced". Which I already knew so, nope, no prognosis. Uncharted territory I suppose but the quality of life she has now compared to before is astounding.

floydpambrose16 karma

Have you ever tried the ketogenic diet?

mtmew30 karma

Yes, no success. Also if she could have walked, I am prety certain she would have knifed me in my sleep.

floydpambrose8 karma

I'm really glad yall've found something that works for her!

mtmew10 karma

Me too!

oXBoneSXo15 karma

Are you the only one using these methods for children or are you working with people in the same situation as you are with your daughter?

mtmew17 karma

I am not the only one but as far as we know she is having the most success with it in Canada.

oXBoneSXo11 karma

Thats awesome glad to hear, hopefully it will be able to work for others. Do you know why it works best for her more than other children?

mtmew17 karma

Really? I think it's all trial and error. Ithink that because of all of the cannabanoids and different strains and ratios its about finding the right one. We are doing a fundraiser to get the dna sequencing done so hopefully we can find some sort of correlation to begin clinical trials but its 10 grand and it's been denied by our province for funding so we are coming up with the funds ourselves!

gingerbeardman_14 karma

Is your doctor going to publish any findings about your daughter's experience with medical marijuana?

mtmew28 karma

I'm not sure, I certainly hope so. It was his idea to go to the media and he did back up her story when they contacted him. Its so contraversial because it's still a schedule 1 but he's a fantastic neuro and I really hope he keeps moving forward with this.

gingerbeardman_12 karma

You should talk to him about doing a case study, it would be a big step in advancing the science. (Probably very complicated in this case though)

mtmew17 karma

Thats what we are fundraising for. To get the genetics down and try to begin clinical trials. I want to put up her gofundme, but I don't want to get blasted so, I'm just going to answer some questions!

hayleymowayley10 karma

If it isn't published in a respected journal, it may as well have never happened.

Publish please!

mtmew13 karma

I couldn't agree more. Thats why Im trying to get this out there.

hayleymowayley7 karma

A case series would have more impact. Hopefully other parents will hear about your successes and approach this topic with their child's neurologist.

mtmew9 karma

They are and are having a hell of a time getting a dr to approve. So, Im fighting for them!

Schnozberryz6 karma

That's one thing I don't get, Schedule 1 drugs (for the US atleast) are supposed to not have any medical use whatsoever, yet there are cases such as yours which indicates otherwise. Especially since your daughter has tried clinical drugs as well.

mtmew11 karma

I'm in Canada but health Canada doesn't recognize it as having ANY health benefits but has to uphold a 2001 federal court ruling to the contrary. That's why I'm raising funds for the DNA sequencing to get a correlation between certain mutations and the benefit of cannabis. We were denied funding. I don't care about the testing as it was presented to us before BUT if it can help other children I'm doing it. I won't put her gofundme account up here because it not really appropriate but if people want to pm that's a different story and u do want to thank the redditors that have!!!!! Sorry ADD kicked in lol.

babarbaby10 karma

Congratulations on your daughter's successes! It seems like it's becoming harder and harder to ignore the therapeutic benefits of cannabis, and hopefully public policy will continue changing to reflect this.

I recognize that your daughter's condition is severe enough that the MM would be worthwhile regardless, but I was wondering if you feel like she's intoxicated all the time now, or if her body's becoming used to it? I have Crohn's Disease, and medical marijuana treatments are gaining a lot of traction for us, but I really don't like feeling high. I guess I was wondering, if you have a sense for it, what the expectation is for long term marijuana at therapeutic doses in that regard?

Also, how does your daughter consume it? In food/vaporizer/marinol?

Thanks. I hope she continues to improve!

mtmew15 karma

Actually suppositories work best if you don't want to get high although you DO get used to it. Also take it at night right before you go to bed.

She takes it in a coconut oil infusion, so orally. Also I won't lie, it smells like ass.

riptide7478 karma

How hard is it to get a medical marijuana license? I've had back, neck, and leg pain for 3 years now and haven't found anything to help after a dozen or more doctors, and I'm starting to give up and deal with the pain.

mtmew7 karma

She was end of life care. For pediatric its nearly impossible. Are you Canadian? Whereabouts do you live? The new legislation that has come in has made it a bit easier for drs to prescribe. Oh and its no longer a licence.

SaintBavo8 karma

[deleted]

mtmew9 karma

Aaaaaand that has me in tears. Not your compliments (thank you though) but your description of your wife's seizures. Talk to her....I find that shortens them. Of course I may just be crazy but I like to think it helps. Give your wife a huge hug from me.

miss_baerly8 karma

[deleted]

mtmew8 karma

She actually started on a high thc. We know high cbd works for some dravets kids (we don't know why). Mia is not Dravets. She uses a 1:1 ratio now. She's always had an excellent appetite so I haven't really noticed a difference.

improbablewobble6 karma

I'm sure you've heard of these, and it might not do you any good in Canada, but:

mtmew11 karma

Im friends with Paige Figi, Charlottes mom as well as the Stanley brothers, well Josh anyway.

improbablewobble7 karma

Yeah figured as much, but just in case. Y'all are kickass moms.

mtmew8 karma

Thanks, but what would you do for your child? The same thing.

improbablewobble8 karma

Absolutely. Didn't mean to do the whole "you're such a saint for what you do!" thing. I know that really pisses off parents of disabled kids. But as a kid who had two shitty parents growing up, neither of whom were around much, I know these things aren't a given. I meant it the same way I'd say if about any parent who takes care of business. It just always seems remarkable to me because of the way I grew up. Sorry, didn't mean to offend.

mtmew9 karma

Oh no! You didn't offend me at all! It doesn't piss me off, it's just the truth, you would do the same!

ICEKAT6 karma

Hey, Thanks for being an awesome human being, and a great mom. I'd send you ridiculous amounts of timmies cards if I could afford them

mtmew8 karma

Hahahaha. I think thats where all my spare money goes. Delicious delicious Timmies.

zapizoid6 karma

What impact have you noticed with the people strongly against cannabis use when told your daughters story? I frequently use your story as a case study when arguing with these groups. Side note: I support medical and rec use, but refrain from it personally.

mtmew7 karma

I come prepared. I am usually speaking with medical professionals so I come with other case studies. In Canada though the cannabis culture is a bit different.

zapizoid6 karma

I too am from Canada! Thanks for the response and doing this ama. Best of luck to you!

mtmew5 karma

Thanks fellow Canucker!

SamSara435 karma

Do you have a pediatric neurologist that has been supportive?

mtmew5 karma

He's the one who signed so yep!

roodvuur5 karma

If you're still answering: does she develop any kind of tolerance issues?

mtmew6 karma

shes been using it for 8 months and so far so good. I will up her dose if she's sick etc. Thats about it.

A_HORNY_KANGAROO5 karma

How did your friends and family feel when they found out you were giving your daughter medical marijuana?

mtmew17 karma

Some positive, some negative but they don't live our lives, they haven't the slightest clue what its like to watch your child seize for hours. So the negative nellies, I've cut out.

dyemyhurpls6 karma

I think with my family it would be different. I am a huge stoner and it surely helps out with sore muscles from the gym and anxiety. However I am lucky to be in a family full of stoners like myself. Sorry to hear that your family is negative towards your decisions. Your daughter will thank you in the end. :)

mtmew11 karma

They wouldn't care if I smoked it, I think it's because of her age. But, screw them (in a nice way).

Shezzam5 karma

You are an awesome mother. Your daughter is so lucky you are able to help her, it's not available in Australia yet. Are there restrictions on employment opportunities or is the Med/Pot improving her options?

mtmew6 karma

She will never be employable unfortunately.

Shezzam4 karma

That is so sad, and hard for you to figure your lives around. Best wishes for you all, I hope it gets better.

mtmew8 karma

It is what it is. None of us are guaranteed healthy children. I just want other children to have access to the same potentially life saving benefits of this medicine as possible!

xastey_5 karma

I just finished reading some of your response and the one about her first words just a few months ago got to me. I'm glad that MM has been able to help out.

mtmew8 karma

Me too. I actually breathed a sigh of relief as I typed that.

TheBatIsI5 karma

Have you heard anything about the effects on adults? My sister is 29 and diagnosed with Lennox-Gaustaut syndrome. She is incredibly brain damaged and my family recognizes that she needs 24 hour care. If we could just cut down on medication alone, it would be great. Even with all the meds she is taking, she seizes very frequently.

Unfortunately we live in Georgia where cannabis oil and such is banned. If it comes down to it, our family has been contemplating a move to Colorado unless a legal way to get medical marijuana comes by.

mtmew7 karma

Yes I do and I can put you I to contact with another mom. Her daughter is 17. She's a bit.....different but her daughter Haas lgs.

Mattprime865 karma

How does you using marijuana help your daughter?

mtmew13 karma

I titled before I coffee'd and I can't brain before I coffee.......smartass.

Mattprime868 karma

This is a good answer.

mtmew9 karma

Thank you.

Greyshot265 karma

As a 21 year old who had terrible catastrophic tonic-clonic epilepsy for 2 years of my life, please just pass on the message to your daughter that she's a fighter and I wish you both all the best.

mtmew4 karma

Ty will do!

Greyshot263 karma

Just out of curiosity, I saw in an above post a list of meds your daughter has used, has she done Depakote? That was the medicine that I used until my seizures suddenly stopped and just wondered how others react to it.

mtmew3 karma

She went into acute liver failure from dilanton. Depakote isn't exactly liver friendly so we couldn't.

menstreusel4 karma

Jesus. You are the best kind of person. Thank you, that ctv video made this heartless person shed a tear.

mtmew9 karma

Like my sons MULLET too? He thought it would be hilarious to try and bring it back.......two days before the interview. Sigh....a mullet.

joebleaux3 karma

Isn't a mullet called "hockey hair" in Canada? Perhaps I've been mislead in the regional terminology variations for the hairstyle.

mtmew6 karma

"Flow" actually and it is ridiculous.

TheRightChoyce4 karma

My father has epilepsy but is hesitant to try medical marijuana. What can I do to help convince him to try it?

mtmew3 karma

Is he a part of any social media at all. It's easiest to talk to people that have been there and I can add him to a lot pf groups. If not I can and you some dilea to read over.

TheRightChoyce3 karma

I know he has a Facebook account but he's not that social media savvy. He does belong to a local epilepsy support group, but it's pretty depressing. Almost everyone in the group has given up (accepted that this is the lot in life and it is not going to get better)

mtmew3 karma

Pm me I'll direct you in the right direction.

TongueDartTheFartBox4 karma

Whats her favorite thing to eat when she gets the munchies?

mtmew6 karma

Chocolate, but thats her favourite thing EVER. She likes it me than she likes me I am sure.

RingChingChing3 karma

[deleted]

mtmew8 karma

I haven't met a parent yet who has a child with a debilitating condition (intractable seizures) that doesn't want this option available. I would simply say, research. Then I would likely hand them the files I have on it. Let them make their own decision. I am not here to judge only help and inform.

Sportsnut193 karma

What kind of munchies do you recommend?

mtmew5 karma

for me or her?

Her favourite anything is chocolate....even before cannabis

Sportsnut194 karma

Chocolates one of my favorites too, do you think she is a typical "picky eater" like most kids or does she eat a lot?

mtmew20 karma

She hates pasta. WHO HATES PASTA??????

Alyssa_xD3 karma

Thank you for doing an AMA! I have a sister who has mental physical disabilities. This is nothing compared to what your daughter has, and does not cause her any life threat or pain, but I think I can relate slightly to your daily struggle. you are truly a strong woman!

I am a strong supporter of exploring the medical benefits of marijuana, if there is a natural drug that is saving lives with so many less negative side effect, why are people suggesting we ignore it?

My real question is, I know you said you are raising funds and hoping eventually for a clinical study, but do you know why scientifically this has stopped your daughters seizures? I'm no scientist so I would be looking for a simple version, but I am curious what exactly it does.

Im so glad to hear your life has been improved, good luck to you and your family!

mtmew7 karma

There are theories with the cb1 and cb2 receptors but really we don't know. That's why I'm raising funds. DNA sequencing to find the mutation and say ok here it's working with this lets get some clinical trials. The test though is ten grand. Super awesome on one income lol.

Alyssa_xD5 karma

Thanks for your reply! I can't wait to see the advances in medicine cannabis brings. I hope you find the funding, have you thought about an online fundraiser? Some people might donate small amounts? I would. Small amounts in large numbers goes a long way!

mtmew5 karma

I do have an online fundraiser. I did put it in /r/donations. Didnt really know where else to put it! It's a gofundme account.

mtmew6 karma

The problem is, we don't really know. There are hundreds of cannabanoids and we have an endocanabanoid system in our body....it can really effect , well, anything.

sigrid23 karma

I didn't look at your proof just came to ask are you that lady from The Twin Cities ? I think I saw you on the news best of luck dealing with the gov. I have to say his comment about you saying that "if she needs weed go find it on the street" was pretty horrible. He would rather have you and your family exposed to danger than help a citizen of the state there needs to be a change !!! Soon ! Best of luck to you !

mtmew5 karma

Nope not me. I'm in Canada and she's legal!

Hov5893 karma

I am happy you finally found a solution to your problems. However, what do you think is going to happen long term? What will you do to eventually break the dependence on marijuana. Maybe possible exemptions might be made, however what will employers think of an employee who must always be on marijuana whether it be medical or not - since your daughter is effectively becoming dependent - have you considered these things. Best wishes and good luck!

mtmew5 karma

She will never become that independent.

yoitsme633 karma

[deleted]

mtmew3 karma

I'm for both. I dont smoke but it's quite a lot safer than cigarettes or alcohol and police rarely get called to domestics because someone has smoked too much pot and is violent.

That said, my fight is for pediatric cannabis research and accessibility.

theforce343 karma

Can you give an estimate on how many seizures she had before and after beginning to use MM? I noticed in the second news interview that they didn't even talk about how it helped her, you talked about her condition and they just cut the feed.

mtmew5 karma

The second one was cut short because of the shootings yesterday. It was a live national interview. Between myoclonics, complex partials, tonics and tonic clonics, between 50-100/day. Kind of hard to keep track of myos. After she started cannabis, her myos COMPLETELY stopped. Then within 24ish hours the rest did too. Shes had one tonic clonic (grand mal) and six complex partials in the past 8 months.

heart4world3 karma

Thanks for doing an ama!

In my community in Pennsylvania there's a lot of recent news coverage of #annasbirthdaywish, trying to get Charlotte's Web for a local 11yo who has Dravet's.

How did you learn what strains of cannabis to use, & how to process them into the coconut oil for your child's use?

mtmew3 karma

Trial and error and with people who have been doing this for a very long time.

Hotwings263 karma

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mtmew7 karma

She is starting to develop more but what came first right? Did the seizures cause the damage or the damage (genetic) cause the seizures. I believe it to be the latter and the seizures added to it.

Hotwings263 karma

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mtmew8 karma

I do have renewed hope yes. Between being snowed from the pharmaceuticals (and of course they have their place, just not with her) and the seizures....she couldn't learn much of anything.

Hotwings264 karma

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mtmew5 karma

Thank you!

Turbowang3 karma

How do people usually react when you tell them about this treatment?

mtmew9 karma

Actually most are at first amazed, then very supportive.

pure___poppycock3 karma

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mtmew5 karma

Phineus and Ferb but also any show that has dead bodies in it lol. TWD, Criminal Minds, Real Life Mysteries. She's definitely my daughter.

Truegold432 karma

What do you two do for fun together? She's still a child and all children love fun!

mtmew2 karma

Dance parties ((lady gaga and while I can appreciate how much she loves her sometimes u want to put forks in my ears.....it's constant) she's getting heavy but, I would stand to Lora a few anyway lol. Also swimming. Love love loves swimming. Oh she also likes watching phineus and ferb and TWD....Criminal minds anything with dead bodies I know...weird. I joke that it's probably a good thing she's disabled aaaaaand sometimes I might joke and call her Jeffrey.

Redhotchiliman12 karma

Which state do you live in to obtain medical marijuana? Do you agree with medical marijuana use for other ailments other than seizures? I am very interested in the medical marijuana field and one day hope to work in such a store. Trying to receive a degree in health services administration in virginia where marijuana use will probably take a while to pass medically. also what is the method of consumption of your son? does his medication contain thc, or is it highly cbd based?

mtmew3 karma

I'm Canadian. It's federally legal for all Canadians who qualify. Yes I support it for ailments other than intractable seizures because the research looks promising. She is on a 1:1 ratio. I don't believe in only one cannabinoid. I believe thc plays a huge role in the control of her seizures but can I prove it? No. We need to be able to prove it.

Truebandit2 karma

What was your first thoughts when medical marijuana was suggested as a treatment method?

mtmew11 karma

I suggested it. We were at the end of our pharmaceutical rope. I was fine with it given the drugs shes been on for 8 years. She's been getting high off of pharmaceuticals for years. One caused acute liver failure, another drug induced hep. I wasn't concerned. We either did this or let her go.

hayleymowayley5 karma

Where did you get the idea to use marijuana from though?

mtmew10 karma

Oh sorry. Social media actually. There is a small community of parents and we all kind of pool our resources. That's where I first heard about it.

Shezzam3 karma

What a horrible point to come to... good luck for the future!

mtmew3 karma

Thank you!

Maynays1 karma

What's your family life like? What's your lifestyle? minimalist? hippie? aristicratic? What has lead you to choice alt medicine? Have you ever smoked marijuana?

mtmew3 karma

Typical Canadian hockey family who used to spend a lot of time in the ICU I guess. Three kids, 2 dogs a cat and a bearded dragon (boys wanted her....she stays downstairs with them). Just....normal I think.

TheQuickSloth1 karma

Do you ever steal you daughters stash and smoke that shit??

mtmew2 karma

No I smoked when I was a kid but it's not really my thing. I am always so busy with her and two boys in hockey that when I get a chance to relax, I'm ko'd.

lovinlife6421 karma

Are you single?

mtmew3 karma

No, I stay at home and take care of the house and kids, husband works and commutes so he's gone from 5am-7pm M-F. I used to work however but had no choice but to end my career when she was born (or place her in a hospice home and that was just not an option for me).

TryNstopME0240 karma

It's interesting that weed is illegal in most states but is used as a medicinal and recreational drug. My question is, say if heroin became legal to treat seizures would you be opposed to give your daughter that? If your daughter never had seizures and she started smoking pot would you mind she smoked it recreationly?

mtmew5 karma

Good question. Well heroin is pretty much legal in the form of oxys. If it didn't have the negative side effects that it has, yes. Unfortunately we know how horrible heroin can be for you. Again quality of life.

As for recreationally? Well, I'd prefer my children smoking a joint than getting loaded at a party that's for sure. would I be ok with it? No, they're kids they do dumb enough things when sober but like I said I would prefer it. As an adult? It's their decision.

dimeadozen093 karma

heroin's not really that bad for you. being a poor addict is though.

mtmew2 karma

The way heroin is metabolized is kinda bad for you especially when compared to cannabis. The poor addict just makes it worse.

mikehollowed-6 karma

How does the actual use of the medicine work? I think medical marijuana can be beneficial but I don't know how you get away with making a child smoke.

Also, what do you mean by "control?" How well does it actually work? Good luck with everything, by the way. I hope your daughter lives a wonderful life

mtmew9 karma

Please watch the videos or read I do NOT let my 8 year old daughter smoke weed. I use a coconut oil infusion and given the choice between cannabis and ketamine quite frankly if smoking were her only option I would. Thankfully I dont have to do that. Watch the videos.

mikehollowed4 karma

I wasn't saying anything bad about it, whatever works works. I apologize for not realizing that's what was happening. Sorry

mtmew7 karma

It's ok, you aren't the first to assume she was smoking it. I apologize for snapping at you, that wasn't ok.

Okayloll-7 karma

You're a disgusting human being. People should call child protective services on you.

mtmew2 karma

Well watch my videos you have my full name and city. Do it! I'm going to go ahead and say a ped neuroepileptologist has a better medical background than a social worker. But, you silly person she's legal and there isnt a thing they can do! Also it's clear you are highly uneducated on the subject I urge you to read and call CPS if you want. I'll even offer them some coffee!

SaintBavo0 karma

[email protected] offer them some coffee! Go Mom, GO!

mtmew2 karma

It would be rude not to offer someone something to drink when they come to your home. I mean really. Manners ;)

h3yf3ll5-13 karma

what kind of music does your kid listen to when it's all high?

mtmew6 karma

*She not it and she loves Lady Gaga. LOVES. Also she isn't high like you would think. Her brain needs it, not like a rec smoker.

h3yf3ll5-22 karma

right right, whatever you need to tell yourself to feel better about it. let's just call it "under the influence of drugs" instead of "high" so you can't play weasely semantics lawyer. but seriously, though, i'm proud of you for drugging your kid up so you don't have to put up with its bullshit.

mtmew7 karma

Welp, go take some ketamine and come and talk to me (if you can). Then when THOSE side effects wear of, take some oil. She doesn't give me shit you moron, she is disabled. If that were the case Id be giving it hand over fist to my 14 year old.

hayleymowayley9 karma

h3yf3II5 is a troll account, ignore!

mtmew2 karma

I went through it and realized after. I think he needs a job, or if he's in school, to study.

h3yf3ll5-6 karma

of

Id

but seriously, aww, thanks for reading, bro! no need to be mad though, your 14 year old probably already gets high. enjoy your burden now that you keep it all doped up. next time have an abortion!

mtmew5 karma

Hes a triple A hockey player who's being scouted and gets piss tested, so he doesn't but if he did I'd deal with it. Seriously though you seem to be dealing with some type of personality disorder and are probably hurting, if you ever want to chat, I'm here.

Gonad-Brained-Gimp-1 karma

Don't feed the troll!

mtmew3 karma

Ya I'm done, he's talking about psychoanalyzing and it doesn't take a genius to figure out his parents never loved him as a child :(