March update

This has been a pretty awful month. It started with a really great trip to Disneyland with our youngest – the first real family vacation we’ve ever had. It’s hard to call it a “family” vacation without Alex being a part of it, but even so, it was a really wonderful trip. I just wish that enjoying the trip didn’t make me feel so guilty.

After the trip, though, things went downhill for Alex. He’s had two extremely rough visits in a row. Of the three hours we were there last Saturday, he was happy for maybe twenty minutes, and raging for at least 45 minutes total. His arms were rough and bruised from biting himself so much, and he’s just looking miserable. To top it all off, we can’t get him to eat the hash anymore. The one time during his week when he could get some relief, and now he won’t take it. I don’t know what to try, but I feel like once again better information would help. There are so many things you can do with cannabis, there must be something else we can try.

It’s been tough to get around to writing here lately. With this new facility, Alex’s behaviors seem to have gotten worse. He’s about as bruised as he was when we had to get the state to intervene, and from the reports we’re reading, it sounds like he has some incredibly bad days still.

I was really hoping the Sirolimus would help his behavior, but so far this doesn’t seem to be the case. It’s hard to hold out much hope for anything anymore, which makes it very hard to write.

Here’s hoping this Saturday goes a bit better.

2 thoughts on “March update”

  1. I was just informed of this site by my daughter since I am taking an abnormal psychology class and she thought to tell me about it. She stated a family member of ours who teaches knows or knows of your son through a mutual connection. (I did not confirm.)

    First, I would like to say God Bless you and your son. His situation is unfathomable and being a parent myself, I know you must be going insane that there is nothing you can do to save him. I hope that he is receiving much psychological therapy, not just for dealing with his disorders, but for also coping with the move to a new home, and for grieving the loss of his family home. These changes must be traumatic and only confound his overall condition; it must be difficult for him to fully understand at his tender age.

    Second, I am sure you must have received tips about getting him to ingest the cannabis, but having seen that there were no comments to your posting, one can not be sure. If he can not or will not smoke it, best to bake it up in some brownies, or other favorite baked treat of his. You would need to measure each brownie into cupcake papers and bake them in a cupcake pan to ensure the correct dose is stirred into each brownie. Brownies have a strong flavor (as opposed to, say, sugar cookies) so I think brownies would hide any bad flavor he dislikes about the cannabis. Don’t make them too large (no more than halfway in the cupcake paper) in the event he doesn’t want to eat a large brownie–then you can be sure he ate most or all of his dose. Also, make sure you grind the cannabis up (like a spice powder & never anything bigger than minced onion size) before mixing it in to avoid him running into chunks of it, (assuming it will turn him off to feel it in his mouth). And then, obviously, keep them sealed and in a cabinet the youngest can not reach nor access somehow.

    As for the controversy–to hell with it all. It’s easy for others to stand aside and judge without having experience with nor understanding first hand even so much as an inkling of what your son and family are going through. If outsiders (including nay-saying family or friends) can not be supportive at this point, tune them out! Shut them out! Do not listen to them! Do not allow their comments to make you second guess your instincts on what has the most positive effect on your son. He is 10 years old, he’s just a little, beautiful boy who is confused and suffering dearly at a most severe, unthinkable level. What do these judgmental onlookers know of the immense psychological stress your son endures on a daily basis? Nothing, they know nothing. He has a sweet and young mind, and if something isn’t done to make him smile, help him cope, laugh, and have less urges to inflict such horrific and life-threatening injuries to himself…a beautiful, bright-eyed boy will lose his life too soon. You know what works best right now, so do whatever you can bring some normalcy into your child’s life.

    Third, yes, pharmaceuticals are bad for the adult human body, let alone unleashing them into the tiny body of a 10 year old. The “legal” drugs probably have NOT undergone ACTUAL HANDS ON testing by the FDA, because we all know they are backed up for many years to come and are terrible understaffed–and it is common knowledge that the FDA’s main practice is stamping & pushing paperwork. Just because you can legally buy these from a pharmacy should never add comfort to anyone’s mind about their immediate safety or long-term potentially damaging effects. Consider the tradeoff: my son takes meds for acid reflux, to control pre-asthmatic conditions, and to help him focus. I hate giving him each and every drug, especially the one for focusing, but the benefit I actually notice currently outweighs having to give them to him. These manmade chemicals are not the best choice, and the only time you should consider one is if the tradeoff is indisputable, and from what I have read, the tradeoff you are seeing isn’t very significant–there’s no real value to any of the pharmaceuticals thus far, and right now, improving his mood should be priority number one. When an individual is in a more peaceful and happier state of mind, cognitions & behaviors DO improve, and other physical ailments could improve, too. Cannabis is grown from the earth. Ask these negative, judgmental, and overly opinionated onlookers if they believe in God or a higher power–and when they say “yes”–remind them that God created ALL that grows from the earth…and He created nothing from a science lab. If they truly believe in God, they should put more faith in what He has created, not elsewhere.

    It would be great if there was a miracle drug to correct his disorders or at least cease the self-injury, but in the meantime keep doing and using what works (the cannabis), improve this little boys mood & quality of life, do whatever you have to do to maximize quality family time, and never doubt that you are doing all that you can for him. I do not know either of you, but it clear to see from the effort you have gone through thus far, including making a website that deserves national attention to shed light on your unique & rare situation, you both must be wonderful, loving parents and you are doing a great job. And don’t ever feel guilty about taking a family trip without your son, because your youngest matters too–and those memories matter too; and from looking into the eyes of that previously smiling boy in the photo, I know in his heart this is what he would want you to do. God Bless.

  2. Yeah, we did try lots of dosing options. We had butter we put on cookies, which worked at first, but then the taste or the richness finally got to him and he wasn’t willing to eat it anymore. We had brownies he never was willing to eat. We had hash oil. We even had a tincture, but when we found out how much was considered one dose, we didn’t bother giving it (due to the alcohol content)

    Strangely enough, the raw hash works best. I can’t explain it, but he will eat raw hash if he’s not too worked up. He’ll just take it right out of my hand and chew it up without issue.

    If we can get the center to give him this stuff somehow, I bet he’ll be seeing a lot more happy days.

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