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SteelMaiden
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18 Nov 2014, 11:13 am

Apparently I'm a risk to myself and others.

This is seriously getting out of hand.

I don't know how to stop the meltdowns and associated aggression.

I don't know if there is anything else I can do.


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skibum
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18 Nov 2014, 11:25 am

I'm sorry you are having such a tough time. Big Hugs. :heart:


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SteelMaiden
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18 Nov 2014, 11:26 am

Thanks. I don't want to end up arrested and in the secure unit again due to attacking someone. I live in a body I cannot control.

*arrested as in Section 136 of the Mental Health Act: link.


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skibum
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18 Nov 2014, 11:43 am

I would hate for that to happen to you too. I wish I could give you advice on what to do, I just don't know what to do. I hope someone can help.


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SteelMaiden
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18 Nov 2014, 11:55 am

Thanks. I may be getting my meds increased soon. Support worker is trying his best but progress hasn't happened yet.


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eggheadjr
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18 Nov 2014, 12:08 pm

Sorry to hear SteelMaiden. Best wishes for better days ahead - take care of yourself.


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SteelMaiden
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18 Nov 2014, 1:09 pm

Thanks.


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skibum
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18 Nov 2014, 1:16 pm

Please keep us posted.


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SteelMaiden
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18 Nov 2014, 3:22 pm

I will. I took some clonazepam this evening. My wrist is bust up.


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BeggingTurtle
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18 Nov 2014, 10:28 pm

I feel your pain. Honestly, it is believed by my parents and most of my teachers that I will hurt people. I hide from them.


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Lukecash12
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18 Nov 2014, 11:56 pm

http://www.letfreedomgrow.com/cmu/SamsStory.htm

Quote:
Medical Intervention with Pharmaceuticals

Throughout this time we were encouraged by school personnel and his doctors to keep trying different medications until we found one that would help him. We were told that this could be a long process because kids with ASD were extremely sensitive to medications in general and that there was no one drug that worked for every kid. We were constantly reminded of the success stories of other children. Unfortunately, taking any of the medications prescribed by his doctors never helped Sam.

On the contrary, Sam?s mom and I were seeing a dramatic escalation of his anti social behaviors at school and at home. We had never had such intense problems at home. Sam?s condition imminently threatened the safety of our six-year-old daughter whom he began hitting on a regular basis. There were times when I would have to physically restrain Sam because he was in such a rage. He would go around the house yelling and knocking things over as if he were going crazy. He would try to run out of the house at 10 PM in the rain with no shoes on. Our home became a lock down facility. We were all miserable and Sam just kept getting worse. The future looked bleak.

All this time we were going through a litany of medications to "help" him. Over a two-year period we did trials with Respirdol and Abilify (atypical antipsychotics), Ritalin and Adderall (amphetamines), Prosac, Paxil and Celexa (serotonin reuptake meds), and Tenex (Guanfacine), which is a blood pressure medication. We have a cupboard full of prescriptions for Sam. We tried different versions of the same type medications. We were encouraged to keep trying a medication until we knew for sure it worked or didn't work. The problem was he was having significant negative reactions to each medication he would try. He gained 10 pounds in 6 weeks on the Respirdol. Some of the meds, like the amphetamines, were obviously ineffective but others like the Abilify, Resperdal, and Paxil took time to develop negative side effects. The last medicine we tried was the Celexa. He was on it for 2 days in December and had a severe negative reaction. To put it bluntly, he "flipped out" on the medication. We stopped giving it to him immediately but the negative effects lingered with Sam for weeks. At that point we took Sam off all medication. His doctors recommended we try Depakote next. At this point, we were fearful that we would be able to manage him at home either with or without medication.

Decision to Use Medical Cannabis

At this point it was clear that the medications being prescribed by his doctors were not only failing to help Sam but they were harming him. He had gained significant weight, had an increase of aggressive and unpredictable behaviors and, most alarmingly to us, became very distant to those he had always loved so much. He began hitting his grandmothers and sister, and did not engage with his parents as he once did. He even became distant to me, his dad, the one person whom he had always had the most attachment. It was heartbreaking to watch him slip away. It was like the Sammy we had known was disappearing and we feared that he would steadily slip into greater isolation. There were several episodes that were so bad that we considered taking him to the hospital.

My wife came to me with the suggestion that we consider treating Sam with Medical Cannabis. She had found information on the Internet that documented another parent?s success in treating her son who had similar characteristics to Sam with Medical Cannabis. I researched the subject myself and found an article written by Dr. Bernard Rimland from the Autism Research Institute that authenticated the parent?s story and stated the he would be more in favor of trying MC before he would more ?toxic? pharmaceuticals. The article can be found at the following address (http://www.autism.org/marijuana.html).

After discussing it with my wife and Sam?s grandparents, we decided to pursue it further. I knew very little about getting a recommendation from a doctor but was able to contact a doctor in my local area who recommends MC to patients. We had no idea how to obtain marijuana and we didn?t want to do anything illegal. We made an appointment with the MC doctor and gathered up all Sam?s medical and school records The doctor reviewed the case, examined Sam, and educated us on Medical Cannabis. He also made it clear that we would need to share information with Sam?s primary pediatrician. Additionally, we discussed the sensitivity of the issue and the risk that we were taking. As a team, we decided to maintain a ?need to know policy? regarding Sam?s new medication. It was decided that school personnel did not need to know. Sam?s mom and I learned that in California a physician can ?recommend? MC. It is not called a prescription but a recommendation. We also discovered that we would be able to obtain the MC locally through a Cooperative.

Using Medical Cannabis to Treat Sam

I have been keeping a journal since the trial began. The entries were daily to begin. After the first three weeks I reported every three to four days. I am not including every journal entry in this paper because it would be too long.

January 8th, 2008

Today was the first day we gave Sam MC. We obtained the medicine around 3:00 PM. Because Sam is such a finicky eater we were very concerned about putting the medicine in baked goods. We wanted to give him the same amount of medicine at the same times each day and we knew that the baked goods could be problematic. Sam doesn?t like to eat breakfast before school and has an almost uncanny ability to detect anything that we place in his food. Often, he smells food before eating. Due to these considerations, we decided to give him the MC orally, in the form of Hashish.

At 4:00 PM we administered his first dose. We gave him an amount that was about the size of a BB. We rolled the dose into a tight ball and buried it in a spoonful of yogurt. We told him he was taking a new medicine. He chewed the MC when he discovered it in the yogurt. He complained of the taste. We wanted to start out with a very small dose.

Sam had been having another horrible day before the dose. After 30 minutes we could see the MC was beginning to have an effect. Sam?s eyes got a little red and got a bit droopy. His behavior became relaxed and far less anxious than he had been at the time we gave him the MC. He started laughing for the first time in weeks. My wife and I were astonished with the effect. It was as if all the anxiety, rage and hostility that had been haunting him melted away. That afternoon and evening his behavior was steady and calm. He started talking to us and interacting with us again. Sam?s was physically more relaxed and began initiating physical contact with the motivation being affection instead of aggression. It was amazing! He went to sleep that night with no problem and slept through the night.

January 9th, 2008

Gave Sam about ½ dose (1/2 BB) of MC at 7:00 AM. He was not attending his new school yet so spent the day with Grandparent while we were at work. He had rough morning. Hitting, yelling, non-compliance, trying to jump in their freezing cold pool, and running out the front door.

Re-dosed Sam at 3:30 PM when I got home from work. I gave him a BB sized dose, as I had the previous day. I feared that our experience was an anomaly and that, like all the other meds, it was just false hope.

After 30 minute of giving Sam the dose his behavior deescalated to the levels it was the previous night. He was calm, happy, affectionate, more verbal, more compliant, and much more predictable. I noticed that he was open to conversation and even receptive to some short reading instruction. His reduced anxiety level made his behavior manageable and even agreeable. He was perseverating about certain things far less and we were able to redirect him far more quickly and effectively when he did get upset or need correction.


It continues on to an entry from this year and Sam's low dosage hasn't changed. Notice that a small amount is being ingested and it is of a medicinal variety, which means high in CBD and DHC as opposed to THC (THC is probably what causes anxiety and unpleasant sensory experiences for ASD people). You sound like a textbook case because you have similar issues and the medicine you are taking has worse side effects than MC anyways. As you can tell from Sam's parents this might drastically improve your quality of life. There is starting to be more and more medical literature on the subject too.


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animalcrackers
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19 Nov 2014, 12:25 am

Steelmaiden, when your support worker is with you, are they able to help you manage meltdowns or to help you prevent meltdowns from happening?


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nick007
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19 Nov 2014, 1:56 am

I know various psych meds have been tried but I just had a thought that maybe a seizure med would be worth a try. Some are sometimes used for psych things.


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SteelMaiden
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19 Nov 2014, 3:52 pm

I am schizophrenic so I won't be going near cannabis.

I am on 20mg olanzapine, 300mg amisulpride and 900mg gabapentin.

Gabapentin I take for severe chronic migraines but it is also an antiepileptic (although I don't have a seizure disorder). I do wonder sometimes if having my dose of gabapentin increased will help but unfortunately it sedates me a bit and mildly affects my concentration span. I am studying at university so I really do not want my concentration to be affected anymore.

I'm going to uni tomorrow so I will ask my support worker there about some kind of plan to prevent meltdowns. Tbh I didn't get to the full-blown meltdown stage on Monday when I last went to uni, but that was because I walked out of the workshop lecture and we ended up sitting on some bench somewhere.

I had a bad meltdown yesterday and had to take clonazepam. I hate taking clonazepam.


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Matthaeus
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19 Nov 2014, 4:24 pm

Actually I take clo twice every night for insomnia.



Joe90
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19 Nov 2014, 7:01 pm

And then people wonder why I don't want to have a child on the spectrum. It brings unique problems, even if you never brought the child up to be so aggressive. And if it isn't aggression, its some other unique issue.


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