I’d like to say first and foremost that we wanted to thank all of our supporters. in the past few months, even with very few updates from us, we have received tons of emails and Facebook messages supporting us and our cause. The responses and emails about my recent blog post, “I think I’m done”, have been extraordinary. To answer the most common concern I’ve seen: no, we’re not giving up on cannabis — we’re just not writing updates as often.
I wish I had the time and energy to reply to everybody who has commented and offered us advice. I’ll try to at least sum up where Alex is today compared to that last post in April.
Alex’s mood hasn’t really improved overall, but we have found a better level of dosage for the hash oil. By giving Alex just the tiniest amount (which multiple people suggested in direct and indirect ways), we haven’t had a repeat of those first two doses where Alex had a negative reaction. We’re back to the point where we’d say we see a minor improvement in his mood, but it’s still far from the incredible improvement we saw the first few times we gave it. We’re not seeing better results than we did with the tincture alone, so (as usual) this just feels like a frustrating guessing game. If nothing else, at least it’s a different strain with different properties, so we’re able to offer Alex a bit of variety.
And we still can’t get Alex “unwrapped” for more than a few minutes at a time, though we’ve found he likes taking baths now more than he has in a while. This is a small step forward, as (obviously) he can’t wear a wrap while also bathing.
We’re working on getting Alex into the Kennedy Krieger Institute, which is all the way across the country, but has an incredible in-patient program that has shown remarkable success on another child very similar to Alex. I’m not sure what we can reasonably expect to see, but it sounds like there is some potential for major improvements. We just got a recommendation from a doctor at OHSU, so at this point it’s more a matter of “when” than “if”, which is sort of exciting but also stressful. We’re terrified of such a long trip with Alex, but we’re convinced that we have to give it a shot. We’re also not sure how we’ll afford it, so we’ve started on a fundraiser. I’ll post a link to that once we’re sure we have everything ready and worded correctly and such. Hopefully insurance covers the bulk of the expenses, but we’re not sure how we’ll afford the basics like traveling out and back, and a visit or two during his multiple-month stay.
In general cannabis news, the U.S. now has twenty states (40%) with some kind of medical marijuana law. The Illinois law is the most recent, and unfairly restrictive (no help for children, even if they have a terminal illness), but it’s a step forward all the same.
Uruguay is about to become the first nation to legalize and regulate cannabis (assuming the senate vote turns out as expected). This would be a huge move, totally unprecedented as far as I know, and you can bet I’m eager to see this happen.
And, of course, the legalization in Colorado and Washington has, so far, not ended the world or brought on the apocalypse just yet. In fact, I have yet to hear about the many fatalities due to the previously claimed huge rise in “stoned driving” incidences. Or surgeons coming to work stoned. Or people no longer being able to hold down a job. Or the “gateway” effect destroying everybody’s lives.
Maybe with all this good news, we can finally start doing REAL research and figure out why some forms of cannabis are so beneficial to certain people.
I, as many others have said, am incredibly inspired by Alex’s story. I have a 4 1/2 year old son who is autistic. He does not have seizures, but he does have many self injurious behaviors. My husband works with adults with mental and physical disabilities, and he has learned quite a lot since starting work with these people. Not that we weren’t doing our own research (and collecting firsthand experience) on being effective at helping someone with a disability such as Autism not engage in strong self injurious behaviors (if that is even possible). So after working with many different individuals with disabilities, he moved from working with adults with mainly physical disabilities, to folks with mental disabilities as well. From there, he began to work with those with what his work considers to be “Behaviorally/Socially Disabled”, meaning the Autistic adults. Seeing so many adults go through YEARS of what Alex has, not all of them as severely of course, he began to voice his concern more about the little behaviors that we see in our son that have becoming worse as he grows up, such as beating his ears. These behaviors began with Jack just after he turned 2, and we too worry about long term effects such as hearing loss (which runs strongly in my family already) and cauliflower ear. I’ve gotten a tad off topic, but my point in writing this was to say: I am incredibly inspired by the courage that you folks have had in stepping up to make sure that your son gets the help that he needs to live in a somewhat calm environment. I’m sure it isn’t all peaches and cream (as we say in the South), but since seeing your story, it gives me hope that my husband and I will be able to find a solution that works for Jack with regards to his behaviors. We haven’t needed to take drastic action as of yet, which we are very grateful for, but if we needed to, I wouldn’t hesitate. We are after all, PARENTS! What a blessing. Alex is such an incredible boy. It’s hard not to love him just seeing him on the video I watched. Jack is the same way….just a captivating individual. Sorry for the long response, but Thank You for sharing your family’s story with the world. You give people hope! – Jennifer Forbes
I am the single father to a SEVERLY autistic 26yr old son who is non-verbal. I live in Canada, where we have a medical marijuana program and I am a federal recipient. My son has been going through what Alex has been going through for the last 26 years and there are a couple more tests we(his group home and I)have to do to rule out all physical ailments that may be causing his violent self injurious behavior symptoms. I feel we are reaching the end of our rope and if they don’t have any answers, I am going to try giving him medical marijuana oil to see if it helps because we’ve exhausted every other option! I won’t be telling his group home about it when I do, because they would be against it but if they notice an improvement in him, that’s when I will tell them what I’ve been giving him! Like you said, we are parents! Are we not supposed to relieve our children’s suffering if possible?!? It’s pathetic that parents have to worry about criminal prosecution for trying to help their children with innocuous plant. The DEA’s own administrative judge said in 1988 that:”marijuana is one of the safest, therapeutically active substances known to man.”and yet they still continue to send hundreds of thousands the people to jail for it every year, in the US alone!”The land of the free?”I think not! Do what you need to do for your child come hell or high water, and judgment/persecution be damned!
The group home might not be against the medical marijuana. I told the agency that cares for my daughter that I wanted to try medical marijuana for my daughter and they were quite supportive.
AMEN.
Have you considered using hemp oil. This is made from industrial hemp which doesn’t contain THC but does contain CBD which is the cannabinoid that has most of cannabis’ medical properties. Because it’s made from industrial hemp it’s legal in all 50 states and should be legal in most contries too. There’s also a CDB gum called Cannchew and a high concentration CDB hemp oil. These might be easier to dose because they might be more consistent in their amounts of CBD and since they have almost no THC you can avoid a bad reaction due to THC.
The Dixie Botanical products do not contain therapeutic levels of CBD. Furthermore, CBD & THC are only 2 of the potential plant compounds extracted from the trichome resin. The greatest potential for therapeutic benefits from cannabis lies in the synergistic action between cannabinoids, terpenes and flavanoids. For neurological conditions the levels of THCV and CBG may be as critical as any other content. Research is ongoing, but for now careful blending of known content extract oil per individual need providex the greatest effect. In Alex’s case, it may help to allow the majority of THC content to degrade into CBN, which is much less psychoactive and has more sedative effect. Fresh is best for healthy people, but some conditions may require aged extract oil. We don’t k ow for sure yet because research has been limited. Demand removal from Schedule 1, at the very least, so children in need have access to as wide a range and variety of cultivars as possible. Someone may have exactly what would help Alex right now – and not even know.
Yeah, we tried the Dixie stuff and never noticed anything definite. Your last sentence is our entire dilemma – we feel strongly that something out there would work (something did work at one point, in fact), but we don’t know what.
hi, i am really touched by your story, I have a daughter with autism,she is now 14 I feel deeply what you have been thru my daughter was so agressive and hurt herself and others too what really helped for us are these dr Mark sircus protokol( has medical marijuana in the protocol too) you can find his website and conuslt with him IMVA.com ( international medical veritas association) and Dr Klinghardt s protocol http://www.klinghardtacademy.com,he has different protocols like reduicng ammonia from the brain,deyoxing the brain with a natural thing that we we found in switzerland only called BH4 and then reucing testosteron hormone and mercury( and also other heavy metals and chemicals) which bind eachother and cause neurotoxicity you can contact hic clinic the sophia health institute (google) we also tried the stemcells but not much worked also tried the GCmaf which is also dr Klingahrdts recommendation now we added a tibetan herb from a tibetan dr who comes here every 2 months ,the tibetan herbs are the best ones so far i think you can find several tibetan centers in Us BTW We live in istanbul,turkey I hope I could help if you want to ask questions you can email me at susi.talya@gmail.com
i wish you good luck
talya
Have you listened to the latest “seed to cure” on blogtalk radio? They had a few parents on who were finding that high CBD oils caused self injury to occur, and oils with sufficient levels of THC did not cause this.
Also, they mention a coconut oil extraction method that they are using, to achieve well controlled low doses.
Praying for you all, and hoping you get the KKI referral.
I am so grateful to Eric Oliver for providing me with Cannabis oil here in United States. I was diagnose with Breast cancer 2 years ago, and ever since then i have done a lot of Chemo and Radiation that have not help me, but only damaged my immune system and render it weak and helpless. I came across the Phoenix Tears and i have read about the Cannabis oil a lot and saw that I could provide me with Hemp Oil here is the State, i contacted him on:ericolivermedicalservice@hotmail.ca for the procurement of this medication, to my surprise the medication was procured and delivered within 48 hours and i have been on treatment for the past 3 months. Am now here to testify that am no more a cancer patient, I have experience a total transformation in my health sector with Rick Simpson Hemp oil service. for all cancer patient that live in the America and Canada region, get your Hemp oil from ericolivermedicalservice@hotmail.ca, Rosana Ekelund
There are now 22 states with medical cannabis laws and 9 more with cannabis-epilepsy laws. Making 31 total.
My name is Maricel Mark from Holland,my daughter who was suffering from epilepsy from the age of 5 years was cured with CBD and THC cannabis oil from cancer centre London i contacted via email londoncancercentre@gmail.com The cannabis oil was supplied to me here in Holland with prescription on how to use it for treatment of seizures/epilepsy.After 3 months my daughter was cured and free from seizures.
My journey with breast cancer started in November 2004. I was devastated, scared and numb when I found out I had cancer. At the time, I was 48 and thought that I was healthy. I immediately started researching doctors and treatments. I found a surgeon near my home outside of Savannah, Georgia to remove the tumor. After the surgery, I consulted with a local oncologist and radiologist. The doctors were so impersonal. They didn’t want to listen to a word I was saying. They wanted to put me in one of those cookie-cutter scenarios. There were no other options for me. They just wanted to cut, radiate and do the chemo. I felt with the way they were conducting business, I had to get a second opinion. so we decided to try Rick Simpson hemp oil. we contacted Rick via:ricksimpsoncancerfoundation@gmail.com, i used the oil for a month and there was great changes.
I want to help you. I have an 8 year old with autism who had become self injurious and violent. I thought mmj was not working the first month either but I needed to increase the dose a lot. If it costed me more I would have to stop buying other supplements. The oil needs to have THC and some kids may benefit from plants that are higher thc than others. Also you should get the oil in a syringe. It is the easiest thing to administer and you can give a small dose as needed throughout the day. Whenever my son starts acting in ways that indicate he is feeling violent, I give him more. The more he gets the calmer he is. I also radically unschool my son so he does not see therapists at all.
I am unable to post this in the Success Stories for whatever reason, so I posted here. I was diagnosed with prostate cancer on October 18, 2013. I was advised by my doctor that my only options were to get a prostatectomy or have radiation seeds implanted in my prostate or receive regular external beam radiation. I declined. I knew there had to be other options. I scoured the Internet and discovered a wealth of information about cannabis oil curing cancer. I was able to obtain some medical marijuana oil (Rick Simpson Oil) from it and consumed the recommended dosage by mid January. On January 26th I had a cancer reassessment which consisted of an MRI with a state of the art Tesla 3 MRI machine. Results – NO SIGN OF CANCER! CANCER FREE! One of the things that helped me while going through all this was reading the testimonials and the success stories of those who have used the oil and were cured And with good food diet. Now that this wonderful oil has cured me, I feel I need to let others know as well. Please feel free to contact Rick at: rickcannabis12@gmail.com .com were i purchased the medication oil from. Thank you, Dante Amato
I haven’t read every thing you have shared yet. I am struggling to get through it actually. My son was diagnosed high functioning and is for the most part. He speaks and understands everything. But in the past couple of years he started flying into rages and they have increased and worsened. I have too many scares and bruises and I am tired of shuffling him through different medications. You have inspired me to do something before it gets out of hand. I want my son back. The one he use to be with a happy smile and a sweet kind caring voice. I don’t want to be afraid of what he will do to me or others. There has been talk of putting him in a respite home but his father doesn’t see him at all anymore and I am all he has. I am not giving up on him. Part of his anxiety is being away from me and home, it wouldn’t help. North Carolina is a long way from using oils to for much more than seizures. It looks like moving is going to be our only option. At least until we can get it done here at home. Thank you so much for sharing your story. I am going to look it up and see if anyone has started a petition for this here yet. I would hate to leave my support system for very long. Thank you thank you so much and bless you all.