Wednesday, March 9, 2016

Giving up was never an option

The life of Kreed is a difficult one. His youth was filled with chaos and destruction as his skills declined and the world no longer made sense. As he got older and had some form of communication with an AAC device, he then struggled with medical emergency after medical emergency and Kreed became a medically fragile and medically complex child no one could figure out. Perhaps one of the most difficult things for Kreed and being incredibly medically complex is the fact that he has paradoxical reactions to most medications.  For each of his medical conditions, Kreed is unable to take any traditionally prescribed Meds or none of them at all. This made his medical conditions that much worse. Throw in a teenager in the throes of puberty who doesn't understand pain and his self injury raged out of control.  

Once Kreed moved to Colorado, he was met with unparalleled medical care. Doctors finally willing to see his medical issues and not his behavior. They also explored even further his reactions to medication. Kreed is left with very few medications to help him. Doctors spoke to us over and over about alternative medications that could help a majority of his symptoms. We were hesitant and had only moved to Colorado to help Kreed's legs as high elevation kept him mobile. 
After another set of reactions yet again due to his paradoxical reactions and plunging blood sugars that would eventually require a feeding tube, we took their advice. Kreed began medical marijuana in the hopes of somehow saving him from his pain and plunging blood sugars, epilepsy (including now tonic-clonic seizures) and self injurious behaviors. The doctors were confident he wouldn't have a reaction to that and there were many different medical and behavioral reasons for him to try it. 
Within a week, we saw Kreed's blood sugars stabilize. Where once there were plunging, unrelenting lows, there was now stability. Where once talking about a feeding tube was a daily discussion, there is no discussion. 

Kreed also has severe self injury. No medication on earth stopped him in his tracks from tearing his body apart. Now there is. Every other medication on earth made his self injury worse. Now he knows periods of calmness and happiness. He still had attacks now and then, but they are far less and far shorter and less intensity than ever before. 
Cannabis has saved Kreed's life. From the medical to mood effects. We knew next to nothing about cannabis and what it can do for Kreed prior to the doctors pushing us toward it. The more we researched, the more we understood. And the more we realized this medication would save Kreed and countless others. Kreed is highly sensitive to any synthetic drug or chemical. 99.9% of the time he can't tolerate. So how thrilling is it that a simple plant has held so much medicine for Kreed and changed his life. 
We hadn't talked about it on here for some time. There is always fear of backlash. Always fear of comments. But no one lives our life and understands what Kreed goes through. And the fact that he can make it through days without injury, weeks without low blood sugars and his terrible neuropathy pain somewhat controlled, and seizures controlled we would be negligent parents to not try it and then keep him on it once we see it works. Comments don't bother us when we have no shame. We leave no stone unturned for Kreed. And I know his story could help many more by telling this part of his story. So many other children and teens and adults with autism that could be better helped with a simple plant. Where calmness can replace chaos and happiness replace self injury. To not see Kreed try to tear himself limb by limb is in itself amazing to us and autism should be a qualifying condition for so many. While Kreed started cannabis for medical reasons, it's also helped his mood and affect as well and be able to handle so much of the medical issues causing him pain and discomfort. 
Kreed's life took yet another step in a journey to health with cannabis. It has been the one medication to single handily save him from so much. So much so, anytime we are admitted, the doctors always make sure we have it and administer it while inpatient. 

So thank you to the open minded doctors that saw what we didn't, and helped our son find his way out of low blood sugars, constant un-ending pain and self abuse. We have so much to be thankful for in Colorado, and this is certainly one of them. 

 *Disclaimer: I am not here to say what will or won't work for your child. I am not here to push any specific medication. Every child is different and only you know what is best. What I am here to say is do not give up, be open minded, research yourself, and realize that most doctors are more than willing to prescribe it and try it. 

Medical Facts about Cannabis
* There are no recorded deaths as a result of cannabis over-consumption.
* The lethal dose of marijuana has never been quantified because it is so high and humanly impossible to achieve.
* There are no serious lasting side effects.  There are certainly risks and side-effects to consuming marijuana but they are more mild than those of most prescription drugs.
Cannabis does not have to be smoked.   Intake methods include vaporization, eaten in food, taken under the tongue or swallowed as a tincture, oil or even juiced.
* Kreed uses oil 
* Cannabis supports the body as an anti-inflammatory, neuroprotective and a vasodialator.
* There are three main compounds- CBD, and indica and sativa strains of THC. 
* CBD is well known for its medicinal effects on seizures, inflammation and other medical disorders. 
* Cannabis indica is known and used for its sedative and relaxing properties effective in treating medical issues like anxiety, chronic pain, insomnia, muscle spasms and tremors. Indica often causes drowsiness, which is why many prefer to take it at night.
* Cannabis sativa strains are more stimulating and are often preferred for day use as they deliver a more psychoactive energetic-mind-high. This effect is caused by the higher THC levels in sativas than indicas. Often helps with ADHD, migraines and other brain based disorders. 
* We support the use of the whole plant and not just CBD use. 

29 comments:

  1. Pursing this path now for multiple reasons. Daughter PDD, bipolar, epilepsy, 2D6 P450 poor metabolizer, terrible effects from traditional meds, poor response. Hoping it helps her. I needed to see this today to support my decision. Thank you for sharing. Go kreed and moms! 👍🏻🙏🏻👏🏻😀

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  2. I think it's such crap that Medical Marijuana is illegal in states. It helps people, and has a total of zero side effects.

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  3. Your decisions for your son are yours and yours alone. Nobody has the right to judge your decision. They do not live your life or walk in your shoes. Kreed is incredibly lucky to have you both as parents and you are doing an AMAZING job! So happy to read that Kreed is doing so well with this new medicine. Praying that it only gets better from here:) Susan

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  4. Hey I am for whatever makes a persons life better. Thankful that the state you are in has it.

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  5. Amazing!!!!! So happy that cannabis is helping Kreed

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  6. We have had William on a similar oil since August 2014. It has helped regulate his mood. Why care what others think? Why care about backlash? I still get emails from people calling me a horrible mother for getting my son stoned, its ridiculous. As more people come out and speak about it, the more these stigmas will erase. If you don't mind my asking, which dispensary did you use and what formula? I am curious as our usual oil from PRANA is now leaving colorado and going to California. It is also a low THC product and an oil taken 2x per day. If you can let me know even by private message if you prefer. PLEASE continue to spread the word on how medical cannabis has helped, it has saved our lives as well. Good job and thanks for the honesty.

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  7. <3 Thank you for sharing this. I hope one day his body can take care of itself but it is awesome that you guys are willing to do whatever it takes to help him have a better quality of life.

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  8. I wondered if this would benefit Kreed with all the multiple medical problems CO existing. I am glad to know you have gone this route and that it is working! I am actually having it suggested to me for my seizures and medical issues. I have allowed my daughter to part take of it one night because she was on sensory overload and it was getting worse. I am glad she did. She noticed how calmer she was after a short time verses hours later as before. I know as a mom of a special needs kiddo how some times we have to step out of that box in terms of the usual treatments and look beyond. Thank you Erin for sharing your struggles, your thoughts, feelings, and Kreed with us. You are both courageous!

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  9. Yeah. I am so happy you were able to find something that is working for Kreed. People perceptions of cannabis is changing. People are starting to see it really is beneficial.

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  10. I am so happy that you have found this state, these doctors and this awesome advice that work for Kreed. This is so awesome. Thank you for sharing.

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  11. I am so glad you found something that helps him! no matter what it is.

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  12. So glad you are finding a pathway through Kreed's medical maze. Don't ever feel you need to apologise to your critics; only fools criticise what they have never experienced and don't understand.
    Australia is only now starting to trial medical cannabis on a very limited number of conditions and children have been largely excluded from those trials.
    My husband died as a result of unmanageable seizures. I wish he'd had the benefit of access to medical cannabis.

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  13. I think this is wonderful! Whatever works. It is common knowledge that it is safe than pharmaceuticals. I don't understand why it's still so taboo in most states. I wish it was available to me. I would gladly give back all of the pills I take every day.
    Good on you mom! I'm so glad Kreed gets so much relief from it.

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  14. I am SO thrilled you have chosen CBO! And I am ecstatic it is helping! Ignore any negative comments. You do what is best for your son. I hope you will use it for many years. Please keep us posted on how it helps Kreed! Xxx

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  15. Beautiful! I'm cheering for Kreed, and I'm glad for him that you're able to get him to this point. Hugs, Mama! One step at a time, and before you know it, the worst is far behind you!

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  16. You go mom. you use whatever works. Far better to give this to Kreed than drugs made in a lab. God said the grass was good and He was right!! Whatever works Erin.

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  17. Anyone who would try and shame you for doing anything and everything you can to help you child is an idiot. Kreed is blessed with wonderful parents. My step son Noah is severely autistic, self abusive and almost completely non verbal except when it comes to food...he can say ice cream and French fries clear as day�� I hope Ohio legalizes it for medical use soon so we can try it for him. I think it would help him so much. Thank you for sharing your journey. It has given hope to many. Btw..such a handsome young man��

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  18. SO SO SO very happy that you found something that helps Kreed!!! I often wondered if this would work for my son as well, and although we cannot afford to pick up and move to another state I would be lying if I said I had not thought of it on more than one occasion. Good for you for standing up for your choices for your boy and doing what he needs to make him better. BIG HUGS to Kreed and to you as well.

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  19. AWESOME!!!! So glad you found something that works to help!!!!

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  20. That is FANTASTIC!!! Beyond happy and thankful you were blessed with open minded Dr's that do all they can to help their patients! I pray Kreed continues to improve!!❤️

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  21. I'm a supporter of Medical Marijuana and Cannabis. The US for the most part sees it as a taboo. In Europe its part of the culture especially in Amsterdam.

    If you see the improvements and its done on a calculated basis under medical supervision then that's wonderful.

    I was recently diagnosed as I believe I mentioned with Peripheral Neuropathy from Levaquin. A wicked drug. I tried Naproxcen which does not seem to work. If Canabis Oil woks I would try it.

    How would you go about treating this painful condition? Cold seems to make it worse and my thyroid levels are fine as I'm on Synthyroud. This Peripheral Neuropathy drives me nuts as some days all I want to do is lie in bed with shooting pains.

    We live in a world where we can learn from each other. You are a true gift and I love your approach. Thank you so much for sharing Kreed with the online community.

    Were part of this great big family all praying and sending positive thoughts your way.

    I can only imagine how exhausted you must be tending to the complex medical puzzle. Not many people can do a third of what you do.

    Colorado is a great state to raise an individual with a disability. Excellent hospitals and Doctors.

    Looking forward to reading your future Blog Posts!!

    Best regards to all of you!!!

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  22. I'm so relieved for Kreed and you all that you have found relief for your special son. God bless you for leaving no path not taken in your loving search to find answers to Kreed's complex medical challenges. Praying for increasing positive results with cannabis.

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  23. Can u take antidepressents with medical marijuana?

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  24. I am autistic and have epilepsy. The only time in my life I haven't had shutdowns or absence seizures was that time in college when I lived in the frat house (I'll let you deduce conclusions there).

    I have a medicinal card but cannot use right now due to having a security clearance and the federal scheduling. So, I have to take so many meds that I have to check every 3 months to make sure my liver and kidneys are ok.

    My son is autistic as well and has already started having febrile seizures. I would give him cbd oil quick, fast, and in a hurry if it would help. No judgement whatsoever, we have to do what we have to do to help our children.

    We would have no issues whatsoever moving to Colorado or Washington if that damned federal scheduling wasn't in place. Who the hell thinks marijuana is akin to heroin?

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  25. I was wondering if Kreed's epilepsy/seziures will also now be covered by the cannabis or are the doctors suggesting adding any traditional epilepsy meds? I wish my son could get OFF the epilepsy meds and onto cannabis oil. Pathetic state that we live in won't allow it.

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