Just a mom looking for advice

YetiOG · Jun 25, 2017

Cookie Hill said:
A little bit about us. We live in Cali, and my son is 12. He is non verbal with autism, and as a new added bonus massive seizures. I was a part of this community a decade ago, a friend of Medjool, may she rest in peace. My ex and I were a part of her journey with her son. Oh the foreshadowing!!! Now I too am seeking the remedy to help my son. I've taken him to the Canna Dr. and he has a rec. I told UCSF that he refused their pills and that I want to try this. They are open to it, but I need to act fast before that changes.

The Dr.s of course want to start major medications that up to this point I have been able to ignore. But the seizure thing is life threatening, and I have to do something. My situation is unique even for the med community though, and so I come to you hoping for advice or creative genius. My son won't swallow meds, he can vomit at his own will anything he thinks tastes nasty. You cannot hide anything in his foods, he has spidey senses and can taste it.

I have tried the Care by Design oils, and several edibles and he rejects them. The taste is to detectable. My friend just gave me some CBD isolate. It seems promising, but I cannot find any info- good or bad on it. I can't find any dosing info on it either.

I scoured the local collectives and most of their stuff all focuses on THC and everyone is suggesting to buy flower for my needs. There must be something out there that will work for us in another form. Are there any other picky patients out there? Any ideas of something I can buy already prepared, quality controlled, and readily available?

Any and all help would be so appreciated. Help me save my son's life.

Make olive oil to use as a topical... or see if you can get into a room you could hotbox...

Cookie Hill · Jun 25, 2017

northstate said:
Hats off to Cookie Hill for being a very dedicated person and great mother. You sound level headed in your search and I wish you two the best. Emulsifying the product in a coconut oil base would allow you to cook with it or add it after to meals and I'm kind of stumped too. Toothpaste? add a few drops to the toothbrush or make a mouthwash with tincture? Keep trying and keep us posted and if you need help from the IC community please reach out.

Thank you for the kind words. I am trying my best to find a way to get him the medicine. Unfortunately he doesn't use toothpaste or mouthwash because of the sensory strong taste. We do water and an electric toothbrush that I have to do for him. It really does seem like the popular method is the coconut oil. I do know other moms who use cannabis for their kiddos, but they are all willing to swallow pills, take honey or spoonfuls of coconut oil. I will keep trying until I succeed. I think this is an important discussion for other moms that will follow as it becomes more accepted. Lot's of kind on the autism spectrum are similar to my son as far as limited foods and sensory defensive to new tastes and textures.

Cookie Hill · Jun 25, 2017

bombadil.360 said:
Hello Cookie, I was lucky to be an on-line friend of Medjool, what an awesome lady! I had a different handle back then, she is missed.

I would give your son a nice bud so he can play with it with his hands so he can see how nice the cannabis flowers smell and are, a nice bud on a stem that smells good, and that way he may make a positive association to the plant; I'd also roll and smoke next to him to see if it interests him...I did this with an ex-neighbor and his kid who has trisomia and now the kid loves it, even though he also doesn't understand how to smoke, so his dad blows the smoke on his face, the dad is not a smoker and doesn't inhale himself, last time I spoke with him over the phone, he said he transformed a gas-mask to fill it with smoke while his son wears it. The kid now understands the connection between the smoke and getting dosed.

Good luck!

She was a good woman. And the first thing that came to mind was her calm down cookies she made for her son. My kiddo definitely has been around flower when his dad was around, and there is no stigma attached. Probably it's more of an emotional trigger because he doesn't understand why his dad never showed up for visits anymore. I told him he was working, that's the best I could do. So I guess that's another reason I was hoping to avoid flower. Stress is known to trigger seizures, so I am tiptoeing around lots of things right now.

Cookie Hill · Jun 25, 2017

So for today's attempt I made chocolate chip cookies with cbd chocolate hidden in them. He wouldn't eat them, and not because of the cannabis flavor. He didn't like the smell texture and taste of the cookie! Ugh!!! This is how food goes around here. He's picky and he will go without. Trust me, I have dedicated my life to this kid, and the other special needs families in my town.

BUT- I did take the advice to try a sprinkle of the CBD isolate on his arroz con pollo, and he ate it!!! This gives me hope for a possible option. :woohoo:

I'm going to try and figure out how to measure it. Weigh it? And I will be trying a larger amount as well at that point. The Dr. wants him to take it 2 times a day, 12 hours apart. So just arroz con pollo isn't going to be possible everyday, because he won't be willing to eat it that often. lol But it's a baby step towards a solution.

I think I will also try the balm, I just got some today. I don't see how that can be measured, and maybe that's the issue for the Dr. I am wondering if I rub it in, and cover with socks like essential oils that it will be absorbed? I suppose it's worth a shot right?

packerfan79 · Jun 25, 2017

Cookie Hill, you are a great mother, for all that you do for your child. I hate to hear that the father isn't around it's heartbreaking. My oldest son is autistic, and I can't imagine not being with him. My boy is high functioning, but we still have had textual issues and issues with him eating. I can't imagine dealing with all that you do solo. I really hope you are successful in this course of treatment. The biggest thing people overlook is YOU the mother, caretaker. Never forget you need to take care of yourself to. I know parents of autistic children get forgotten about. I will pray for you and your son

resin_lung · Jun 25, 2017

I feel for you and your son. You sound like a very loving, concerned mother.

I'm sorry if I missed this info or if I'm so unfamiliar with autism that my question is completely ignorant, but is he able to understand things that a 12yr old that did not suffer from autism could? Packerfan mentioned "high functioning".

The reason I ask is maybe a "long con" of sorts, for lack of a better way to say it.

The quicker the better of course, but as long as it takes for it to be because of free will.

This is of course much different than any quick tip you might be given or recipe you may discover.

It will come down to what you KNOW he enjoys in life as well as what he does not. What he fears and what he's capable of believing.

You will for sure need outside help. "Players" are a must. You can not be the only one working towards this.

Things like phone calls, messages on answering machines, you tube videos, letters, fake ads, in the mail and inserted into the local paper, CD's of fake radio stations playing music he likes with some more fake info during the fake commercial breaks that you can play and pretend is coming in over the radio or something.

I know people who could/would probably help. No need for anyone to meet each other. All can possibly be done online or through the mail.

I know this may sound crazy and IT IS, but people can convince themselves to do almost anything. The key is that they gotta believe that they are the one to decide.

The thing is his decision has got to be the one you want. Angles angles angles. Cover all the angles and they never even had a choice. Easier said than done but with careful planning and execution its possible.

The good thing is that no one knows your son better than you.

This wouldn't be something that can be pulled off in an afternoon. It may be, but it would not be wise to go in thinking that.

Start by asking yourself questions like what beliefs does he have that he came to on his own?

What convinced him?

Why?

Did he over hear something that he came to believe?

Was it who he overheard that caused him to believe?

Was it something he was told?

Who told him?

Did he read something?

Watch something?

Does he have a hero or someone he idolizes, like a comic book superhero, pro athlete or cartoon character?

Religious?

I'm gonna stop here before everyone gets nervous about ole resin_lung!

These are just ideas for you but I'm not pulling them out of my ass.

Using this stuff to accomplish what you'd like to accomplish is something I've never heard before but it's all the same.

Maniplulation.

It all depends on his ability to understand, comprehend, rationalize and accept.

PM me if you wish.

Please forgive me if this turns out to be the dumbest thing you've ever heard.

I'd really like to help, unfortunately my abilities are kinda limited to things normally done by.....criminals. Haha

packerfan79 · Jun 25, 2017

resin_lung said:
I feel for you and your son. You sound like a very loving, concerned mother.

I'm sorry if I missed this info or if I'm so unfamiliar with autism that my question is completely ignorant, but is he able to understand things that a 12yr old that did not suffer from autism could? Packerfan mentioned "high functioning".

The reason I ask is maybe a "long con" of sorts, for lack of a better way to say it.

The quicker the better of course, but as long as it takes for it to be because of free will.

This is of course much different than any quick tip you might be given or recipe you may discover.

It will come down to what you KNOW he enjoys in life as well as what he does not. What he fears and what he's capable of believing.

You will for sure need outside help. "Players" are a must. You can not be the only one working towards this.

Things like phone calls, messages on answering machines, you tube videos, letters, fake ads, in the mail and inserted into the local paper, CD's of fake radio stations playing music he likes with some more fake info during the fake commercial breaks that you can play and pretend is coming in over the radio or something.

I know people who could/would probably help. No need for anyone to meet each other. All can possibly be done online or through the mail.

I know this may sound crazy and IT IS, but people can convince themselves to do almost anything. The key is that they gotta believe that they are the one to decide.

The thing is his decision has got to be the one you want. Angles angles angles. Cover all the angles and they never even had a choice. Easier said than done but with careful planning and execution its possible.

The good thing is that no one knows your son better than you.

This wouldn't be something that can be pulled off in an afternoon. It may be, but it would not be wise to go in thinking that.

Start by asking yourself questions like what beliefs does he have that he came to on his own?

What convinced him?

Why?

Did he over hear something that he came to believe?

Was it who he overheard that caused him to believe?

Was it something he was told?

Who told him?

Did he read something?

Watch something?

Does he have a hero or someone he idolizes, like a comic book superhero, pro athlete or cartoon character?

Religious?

I'm gonna stop here before everyone gets nervous about ole resin_lung!

These are just ideas for you but I'm not pulling them out of my ass.

Using this stuff to accomplish what you'd like to accomplish is something I've never heard before but it's all the same.

Maniplulation.

It all depends on his ability to understand, comprehend, rationalize and accept.

PM me if you wish.

Please forgive me if this turns out to be the dumbest thing you've ever heard.

I'd really like to help, unfortunately my abilities are kinda limited to things normally done by.....criminals. Haha

Resin lung, I was referring to my son as high functioning Autism. The Autism spectrum is wide. I can't imagine the challenges cookie and son deal with. That being said it's important to be their for families that face these challenges.

resin_lung · Jun 26, 2017

packerfan79 said:
Resin lung, I was referring to my son as high functioning Autism. The Autism spectrum is wide. I can't imagine the challenges cookie and son deal with. That being said it's important to be their for families that face these challenges.

Your right Packerfan. I miss read but really I know so little about autism that I probably would have risked offending the poor woman either way.

I really just wanted to offer anything I could. When she mentioned her desperation and the desire to hear some out of the box type ideas...I offered one. I hope she and others who's child or loved ones suffer from autism can understand my mistake.

Thanks for correcting me packerfan.

I went to a charity fund raiser a couple of years ago in LA hosted by Jack Black. I think it was at the Nokia center. There were some parents who spoke, then some auctions and in the end Steven Stills played some tunes.

I pretty much missed the auctions and jam session because after hearing some of the parents speak I was tore up! To the point of tears! I got embarrassed and went to the lobby. I had been drinking and was definiatley in a weird place emotionally for one reason or another but it was more than just that. It was the lack of support, from the goverment, medical community and what I understood as lack of support from ANYBODY outside of their immediate families!

Anyway.... I sobered up by the time we got home but here I am, years later and I'm still effected by what I heard that night. So much so I wanted to help.

I should have waited a while and gathered my thoughts before posting.. Perhaps I would have remembered why I was at this autism charity in the first place!

My gf/wifes older sister is heavily involved with Northridge hospital and they are both involved with Saint Josephs in Burbank. St. Joes chapel was donated by her family.

Three years ago her sister started dating and eventually married a guy who has 13 yr old kid that suffers from autism. I met him before. He was a nice quiet kid but I guess he has these..... I'm not sure what the proper name for it is but it's like a attack. She's talked about it a little but I guess It's pretty bad.

That's why I was at the charity. she had left the organization/charity she was working with, which was C.A.T.S (it's a child abuse treTment thing) and started working with a different one that is totally devoted to autism.

I should have offered to put her in contact with my sister in law maybe even asked either one of them for their input, if they had any ideas or if there there was anyway of helping this lady and her son before I posted anything.

I don't know.... just wanted to help. I still do.

I've taken enough space in this thread already though.

stoney917 · Jun 26, 2017

What does a real doctor say???? Maybe just fuck the cannabis its obviously not getting anywhere if the kid refuses it... Ya know its your kid to do what ya want but shit how long ... There gotta be other alternative ways... Maybe ask the Dr for some sort of injection you could give him while he is asleep.. Imo playing with weed concoctions ain't workin loose ya hippy mentality n give the kid pharmaceutical drugs... Or Don't... What's the plan when he gets even bigger n unmanageable .. First time I was locked up my first celli had autism not very verbal etc etc n was there for almost killing his brother n sister cause they pissed him off, I'm no expert at all but maybe there is like a type of place training camp or sumthin with professionals who can teach him better then you..just say in I was in a position where I saw the end result a 6ft4 250 baby monster who probably never gonna get out I know you don't want that... I hope I don't sound like a dick I feel for you , you must have the patience of a saint n dealing with the reality of the situation sucks but as he grows its only gonna get harder . Good luck.

Gry · Jun 26, 2017

Blue Otter school of herbal medicine. Wise and caring women.

LostTribe · Jun 26, 2017

Cookie Hill said:
A little bit about us. We live in Cali, and my son is 12. He is non verbal with autism, and as a new added bonus massive seizures. I was a part of this community a decade ago, a friend of Medjool, may she rest in peace. My ex and I were a part of her journey with her son. Oh the foreshadowing!!! Now I too am seeking the remedy to help my son. I've taken him to the Canna Dr. and he has a rec. I told UCSF that he refused their pills and that I want to try this. They are open to it, but I need to act fast before that changes.

The Dr.s of course want to start major medications that up to this point I have been able to ignore. But the seizure thing is life threatening, and I have to do something. My situation is unique even for the med community though, and so I come to you hoping for advice or creative genius. My son won't swallow meds, he can vomit at his own will anything he thinks tastes nasty. You cannot hide anything in his foods, he has spidey senses and can taste it.

I have tried the Care by Design oils, and several edibles and he rejects them. The taste is to detectable. My friend just gave me some CBD isolate. It seems promising, but I cannot find any info- good or bad on it. I can't find any dosing info on it either.

I scoured the local collectives and most of their stuff all focuses on THC and everyone is suggesting to buy flower for my needs. There must be something out there that will work for us in another form. Are there any other picky patients out there? Any ideas of something I can buy already prepared, quality controlled, and readily available?

Any and all help would be so appreciated. Help me save my son's life.

You can get PM's aka private messages at 50 posts.

There is hope and not all of it would be detectible, tastable or having any affect at all other than stopping the seizures.

In the meantime check out this thread.

https://www.icmag.com/ic/showthread.php?threadid=301121
Treating Cancer with Concentrates

It deals with cancer but many in the field are dealing with other ailments, seizures included. A non decarboxylated concentrate would not cause any "stoned or drugged" effect while possibly still contributing relief from the seizures.

Check back maybe we can find an expert to chime in....

LT

Gray Wolf · Jun 26, 2017

Cookie Hill said:
A little bit about us. We live in Cali, and my son is 12. He is non verbal with autism, and as a new added bonus massive seizures. I was a part of this community a decade ago, a friend of Medjool, may she rest in peace. My ex and I were a part of her journey with her son. Oh the foreshadowing!!! Now I too am seeking the remedy to help my son. I've taken him to the Canna Dr. and he has a rec. I told UCSF that he refused their pills and that I want to try this. They are open to it, but I need to act fast before that changes.

The Dr.s of course want to start major medications that up to this point I have been able to ignore. But the seizure thing is life threatening, and I have to do something. My situation is unique even for the med community though, and so I come to you hoping for advice or creative genius. My son won't swallow meds, he can vomit at his own will anything he thinks tastes nasty. You cannot hide anything in his foods, he has spidey senses and can taste it.

I have tried the Care by Design oils, and several edibles and he rejects them. The taste is to detectable. My friend just gave me some CBD isolate. It seems promising, but I cannot find any info- good or bad on it. I can't find any dosing info on it either.

I scoured the local collectives and most of their stuff all focuses on THC and everyone is suggesting to buy flower for my needs. There must be something out there that will work for us in another form. Are there any other picky patients out there? Any ideas of something I can buy already prepared, quality controlled, and readily available?

Any and all help would be so appreciated. Help me save my son's life.

If he can vaporize, I would look for a high CBD strain like Cannatonic.

We use sublingual troches, but you can taste them and it isn't gourmet.

Is he tasting the CBD or the entourage terpenes. You might try dosing with CBD crystal in food.

I suggest start with a 100 mg dose and titrate up. We gave Pat 300mg doses for siezures.

CosmicGiggle · Jun 26, 2017

northstate said:
Hats off to Cookie Hill for being a very dedicated person and great mother. You sound level headed in your search and I wish you two the best...

In dealing with my autistic nephew over the years I've found bribery to be a very quick and effective tool in helping to accomplish difficult tasks.

I know it's not politically correct but it's a big help in getting the kid to take that important first step in developing a new, desired behaviour and can be quickly discontinued when the task has been mastered.

Autistic kids may not be very verbal but they do understand what you say and what you want.

Explain what you want - for him to try the medicine to see if it will stop the seizures - and try offering a desired but minor, immediate tangible reward for gaging down the cookie and hold out (but let him see) the more desired reward he's gonna get if he keeps it down for 2 hrs. and start out with a low dose that isn't going to make him want to throw up.

Keep it positive and give him the idea that he's in control 'cause 'who's in control' is what the deliberate vomiting is all about. :tiphat:

Mb1991 · Jun 27, 2017

Hi, does anyone know how you can buy ROS oil for cancer, i unable to grow and my time is ticking, Thanks.

Cookie Hill · Jun 28, 2017

resin_lung said:
Your right Packerfan. I miss read but really I know so little about autism that I probably would have risked offending the poor woman either way.

I really just wanted to offer anything I could. When she mentioned her desperation and the desire to hear some out of the box type ideas...I offered one. I hope she and others who's child or loved ones suffer from autism can understand my mistake.

Thanks for correcting me packerfan.

I went to a charity fund raiser a couple of years ago in LA hosted by Jack Black. I think it was at the Nokia center. There were some parents who spoke, then some auctions and in the end Steven Stills played some tunes.

I pretty much missed the auctions and jam session because after hearing some of the parents speak I was tore up! To the point of tears! I got embarrassed and went to the lobby. I had been drinking and was definiatley in a weird place emotionally for one reason or another but it was more than just that. It was the lack of support, from the goverment, medical community and what I understood as lack of support from ANYBODY outside of their immediate families!

Anyway.... I sobered up by the time we got home but here I am, years later and I'm still effected by what I heard that night. So much so I wanted to help.

I should have waited a while and gathered my thoughts before posting.. Perhaps I would have remembered why I was at this autism charity in the first place!

My gf/wifes older sister is heavily involved with Northridge hospital and they are both involved with Saint Josephs in Burbank. St. Joes chapel was donated by her family.

Three years ago her sister started dating and eventually married a guy who has 13 yr old kid that suffers from autism. I met him before. He was a nice quiet kid but I guess he has these..... I'm not sure what the proper name for it is but it's like a attack. She's talked about it a little but I guess It's pretty bad.

That's why I was at the charity. she had left the organization/charity she was working with, which was C.A.T.S (it's a child abuse treTment thing) and started working with a different one that is totally devoted to autism.

I should have offered to put her in contact with my sister in law maybe even asked either one of them for their input, if they had any ideas or if there there was anyway of helping this lady and her son before I posted anything.

I don't know.... just wanted to help. I still do.

I've taken enough space in this thread already though.

I'm not offended! I do appreciate any and all advice. You never know what ideas can come from something being mentioned. I actually have worked with professionals on behaviors, and he gets therapy a couple times a week. I have him in a fantastic school that I had to hire an attorney to make happen after the many violations of his rights in the local district school. I am super involved in my local special needs community, and I am a trained parent to parent mentor with a local organization. But sometimes moms like me need help too. You guys are the experts in cannabis, and so I come to you with an open heart and open ears.

Cookie Hill · Jun 28, 2017

stoney917 said:
What does a real doctor say???? Maybe just fuck the cannabis its obviously not getting anywhere if the kid refuses it... Ya know its your kid to do what ya want but shit how long ... There gotta be other alternative ways... Maybe ask the Dr for some sort of injection you could give him while he is asleep.. Imo playing with weed concoctions ain't workin loose ya hippy mentality n give the kid pharmaceutical drugs... Or Don't... What's the plan when he gets even bigger n unmanageable .. First time I was locked up my first celli had autism not very verbal etc etc n was there for almost killing his brother n sister cause they pissed him off, I'm no expert at all but maybe there is like a type of place training camp or sumthin with professionals who can teach him better then you..just say in I was in a position where I saw the end result a 6ft4 250 baby monster who probably never gonna get out I know you don't want that... I hope I don't sound like a dick I feel for you , you must have the patience of a saint n dealing with the reality of the situation sucks but as he grows its only gonna get harder . Good luck.

The UCSF Pediatric Neurologist originally prescribed a med for Bi Polar/Epilepsy. She knows he refused it, and she knows I want to explore CBD. She herself recommended the same Canna Dr. that I found in my research. He is a respected practicing physician. He is onboard with combining treatments with western medicine if that's what the neurologist wants. He just isn't familiar with children like my son who have never taken medicine. Currently we have an MRI scheduled next month. That will probably bring up a lot of new discussions.

What am I going to do when he's an adult? I'm gonna do my damnedest to give him the inclusive life he deserves. I know it will always be a difficult journey, but I'm not afraid to kick down every door to support him. I'm not afraid to put myself in debt to hire attorneys to protect him. I know all to well about the adults with special needs that have ended up incarcerated. It's incredibly sad.

Cookie Hill · Jun 28, 2017

CosmicGiggle said:
In dealing with my autistic nephew over the years I've found bribery to be a very quick and effective tool in helping to accomplish difficult tasks.

I know it's not politically correct but it's a big help in getting the kid to take that important first step in developing a new, desired behaviour and can be quickly discontinued when the task has been mastered.

Autistic kids may not be very verbal but they do understand what you say and what you want.

Explain what you want - for him to try the medicine to see if it will stop the seizures - and try offering a desired but minor, immediate tangible reward for gaging down the cookie and hold out (but let him see) the more desired reward he's gonna get if he keeps it down for 2 hrs. and start out with a low dose that isn't going to make him want to throw up.

Keep it positive and give him the idea that he's in control 'cause 'who's in control' is what the deliberate vomiting is all about.

I wish bribery was a motivation for my son! That's the basis of a lot of programs. What motivates them right? This kiddo has a mind of his own, he doesn't control a lot of what goes on around him, but what goes in and out of his mouth is something he can control. Obviously I've been trying to explain, reason, demonstrate, show in a social story, video modeling, and a myriad of other techniques throughout his life to help him address his needs. Right now, these things haven't worked for this issue, and time is now of the essence. So I'm asking for a different type of help, knocking at another door.

Cookie Hill · Jun 28, 2017

Gry said:
Blue Otter school of herbal medicine. Wise and caring women.

Thank you, I will look them up!

Cookie Hill · Jun 28, 2017

LostTribe said:
You can get PM's aka private messages at 50 posts.

There is hope and not all of it would be detectible, tastable or having any affect at all other than stopping the seizures.

In the meantime check out this thread.

https://www.icmag.com/ic/showthread.php?threadid=301121
Treating Cancer with Concentrates

It deals with cancer but many in the field are dealing with other ailments, seizures included. A non decarboxylated concentrate would not cause any "stoned or drugged" effect while possibly still contributing relief from the seizures.

Check back maybe we can find an expert to chime in....

LT

Thank you, I will check out the thread.

Cookie Hill · Jun 28, 2017

So a quick update from me!
I went to a couple more dispensaries to try new stuff. Came across yet another budtender that tried to make me feel like shit for wanting to medicate my son!!! Better believe they got an earful from me. Next of the big pharma list will be klonopin and depakote, and I know that cannabid meds are safer than these typical drugs they are recommending for epilepsy.

I bought probably 5 more things to try. 1 was accepted by my son. Its a gummy made from CBD isolate called Kushy. Hugely expensive at $16 for 60mg total.

This got me hunting further for anyone who really knew the science behind the crystaline isolate. I found someone who commented on a FB group about it. I DM'd him asking for help. Turns out he compounds medicines and really understands the science and dosing, plus works in this field. He sent me a formulation to compound the isolate with a few other ingredients to make sure the medicine is fully delivered, to be added to a gummy recipe I sent him. I ordered a couple things I need online, and hope to be able to try this out in a few days.

Has anyone heard of or know about CBD possibly causing diarrhea? After he had the expensive Kushy gummy, he had it a couple hours later. Coincidence? If so, any ideas to counteract that side effect? This isolate might really be the answer to our struggle, but not is his body cannot handle it.

Just a mom looking for advice

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