I've been wanting to write a post about medication changes and the blues it's giving Blue. It's such a draining process and therefore draining subject to think about much less write about. I've been going through this for so long...first with Red and now with Blue. A sistah just can't seem to get catch a break. Now that things have settled down a bit with Red...it's Blue's turn to fall apart.
A good part of this past year has been pretty challenging for Blue. He's growing and going through lots of changes hormonally, which has had his anxiety and anger factor turned up to max volume. He has gone from my easy child...to my problematic child as he approached the big 13. He's inflexible, angry, incredulous, impatient and overwhelmed by all of his many, many thoughts. His mind is spinning at 100 mph and the rest of us can hardly keep up. He is making straight A's, however he seems totally spent when he comes home from school because of social issues. He's so exhausted and drained mentally, yet he pushes himself and makes homework bigger than it has to be. Most nights by bed-time he is a complete mess.
A little over a month ago we weaned him off of one med and started him on another. I don't really want to get into specifics because as we all know, each med works differently for each individual child. Let's just say it's in the SNRI class of drugs, which is supposed to treat depression and Generalized Anxiety Disorder. We started minimally lets say with 20 mg. When that didn't seem effective the docs decided to move him up to 40 and then 60 mg, which is the max for his height and weight.
Did it change things for the better? No. He seemed to become not exactly anxious, but very aware of all of the things and people who really got on his nerves and he felt the need to let us all know about it...angrily. We were up to at least one explosion a day...at least. So I'm thinking...this is not working right?
The Psychiatrist who always wants to add another med, but I have to see her because he's making self-harm statements, and I can't get in to see anyone else anytime in the near future...says lets add this stimulant which should help loosing up his rigid thought and explosiveness. I argue...I put it off...but eventually, out of desperation, I try it...praying that it will help. NOT!!! I should have followed my instinct! It was like he was on speed.
He had already started this researching electronics obsessively...more obsessively than ever. The new Microsoft store opened up and he had to go to the Grand Opening. He went and spent several hours and then asked to go back 2 days later. The obsessions, questions and lists and lists of things to do, buy and research were over the top, to the point where he didn't feel like he had time for homework and showers because he had to do more research for things he can not possibly buy. He became highly agitated whenever he did not get the response from us that he wanted or when we requested anything from him other than what he wanted to do.
So of course, back to the freaking drawing board. We scratched the stimulant after about 8 days, which made him like a robot on crack. A few days later we go into the Neurologist and tell him, hey.. the SNRI is not working either. He says, let's pull him off of it...slowly. He brings up the possibility of trying couple of nightmare meds that I've already been through with Red. Then he brings up a relatively new one called Prystic. I'm like...hell no! I don't want to try something else new and put him through this freakin' trauma again!
Non of the SNRI's or SSRI's that we have tried have worked so far. None of the non-stimulant meds did anything for him but make him sleepy. The only thing that has ever worked is Abilify. Then he started growing and going through these hormonal changes and it wasn't working anymore. Instead of increasing it...the Psych started adding these anti-anxiety, antidepressant drugs. I want him on as few drugs as possible. So I tell the doc...here is what we're going to do:
A good part of this past year has been pretty challenging for Blue. He's growing and going through lots of changes hormonally, which has had his anxiety and anger factor turned up to max volume. He has gone from my easy child...to my problematic child as he approached the big 13. He's inflexible, angry, incredulous, impatient and overwhelmed by all of his many, many thoughts. His mind is spinning at 100 mph and the rest of us can hardly keep up. He is making straight A's, however he seems totally spent when he comes home from school because of social issues. He's so exhausted and drained mentally, yet he pushes himself and makes homework bigger than it has to be. Most nights by bed-time he is a complete mess.
A little over a month ago we weaned him off of one med and started him on another. I don't really want to get into specifics because as we all know, each med works differently for each individual child. Let's just say it's in the SNRI class of drugs, which is supposed to treat depression and Generalized Anxiety Disorder. We started minimally lets say with 20 mg. When that didn't seem effective the docs decided to move him up to 40 and then 60 mg, which is the max for his height and weight.
Did it change things for the better? No. He seemed to become not exactly anxious, but very aware of all of the things and people who really got on his nerves and he felt the need to let us all know about it...angrily. We were up to at least one explosion a day...at least. So I'm thinking...this is not working right?
The Psychiatrist who always wants to add another med, but I have to see her because he's making self-harm statements, and I can't get in to see anyone else anytime in the near future...says lets add this stimulant which should help loosing up his rigid thought and explosiveness. I argue...I put it off...but eventually, out of desperation, I try it...praying that it will help. NOT!!! I should have followed my instinct! It was like he was on speed.
He had already started this researching electronics obsessively...more obsessively than ever. The new Microsoft store opened up and he had to go to the Grand Opening. He went and spent several hours and then asked to go back 2 days later. The obsessions, questions and lists and lists of things to do, buy and research were over the top, to the point where he didn't feel like he had time for homework and showers because he had to do more research for things he can not possibly buy. He became highly agitated whenever he did not get the response from us that he wanted or when we requested anything from him other than what he wanted to do.
So of course, back to the freaking drawing board. We scratched the stimulant after about 8 days, which made him like a robot on crack. A few days later we go into the Neurologist and tell him, hey.. the SNRI is not working either. He says, let's pull him off of it...slowly. He brings up the possibility of trying couple of nightmare meds that I've already been through with Red. Then he brings up a relatively new one called Prystic. I'm like...hell no! I don't want to try something else new and put him through this freakin' trauma again!
Non of the SNRI's or SSRI's that we have tried have worked so far. None of the non-stimulant meds did anything for him but make him sleepy. The only thing that has ever worked is Abilify. Then he started growing and going through these hormonal changes and it wasn't working anymore. Instead of increasing it...the Psych started adding these anti-anxiety, antidepressant drugs. I want him on as few drugs as possible. So I tell the doc...here is what we're going to do:
- Take him off of all of this crap except the Abilify.
- Increase Abilify it to the appropriate dose for his current height and weight.
- Supplement it with the best possible Omega 3's (and no not one prescribed so big pharma can make money)
- A supplement combination of vitamin methyl B12, Hydroxy B12 and vitamin D
- Change our diet to high protein, vegetables and fruits and less processed food
- An increase in exercise
- Psychotherapy individual and family with an autism with a certified BCBA (Board Certified Behavior Analyst)
Adelaide Dupont · 285 weeks ago
And for those of us who knew and appreciated these points in high school to a greater or lesser extent - always good to have a refresher and feel them through the current and future generations who we survived to be able to see.
I especially appreciated points 5, 7 and 10.
And young women not settling or settling down yet is a good thing.
"It's never too late to live our dreams" - but it may be too early for some of them!
And 8 of course.
nicole · 243 weeks ago
Risa · 230 weeks ago
LAH · 221 weeks ago
Maira L. Coral · 216 weeks ago
I was looking for information for my Multi-Genre Disability Research Project from my Early Childhood Special Education class on the web, when suddenly I came across your blog. I started reading this out of curiosity and I want to tell you that as you said yourself, you will not be Amanda Gorman, but you managed to make me shed some tears, perhaps because I felt totally identified with your words, especially in the part that you speak of your son. My son also has Asperger's syndrome, he is 19 years old and he is in the second semester of College. Also like yours, he takes classes from home, likewise my eldest daughter is also taking college classes from her room. At the same time, that I work as a preschool teacher from my kitchen through a computer, my husband sleeps in the room during the day because he works at night. Also in the afternoons I myself take virtual school classes. I am a 51-year-old Latin woman who began to learn the English language as adult, so maybe you find some deficiencies in my writing, however, I was very moved by how proud you express yourself about your son. Referent your mother, I liked the humorous tone that you give when your talk about her, so I did not want to miss this opportunity and stopped my assignments for a moment to let you know that your words do make a difference, since they reach the heart of at least those who have opportunity to read you. I want confess you that is the most long I have written to someone I don't know, because your words inspired me, thank you...
Gavin Bollard · 209 weeks ago
Thanks for this post. I've been very distracted of late and so this was how I found out about our friend Kate. Kate's struggles were very real but they were so constant and so wide-ranging that it was difficult for people around her to address them. I think it's going to take a while longer for me to process all this.
I learned so much from Kate because she was always quick to point out the many injustices in the world. In her glory days, she was very much a crusader and she cared for everyone. Over the years, as her situation took its toll, I came to realise that it was the fact that she couldn't be put in a single specific category, that made the system fail her. She needed help that they weren't set up to provide.
She needed more care and she needed to be less alone. I'm so sorry that this has happened.
For a long while we were corresponding almost every day but a couple of months ago, I realised that she had become so stressed that nearly every interaction I had with her was starting to trigger her. I backed away to give her a bit more space. She only had a little time that she could stand to be online and there were too many things that she wanted to do in that time. I thought that by taking a step back, she could reach out to more people who might be geographically closer and able to assist.
Kate was a beautiful soul and she will be sorely missed by all of us.
diyalabs6192603 11p · 192 weeks ago
Robots for kids
Robotic Online Classes
Robotics School Projects
Programming Courses Malaysia
Coding courses
Coding Academy
coding robots for kids
Coding classes for kids
Coding For Kids
Spoil your cat · 122 weeks ago
Many of these living arrangement aren't good, and many of the people who run those places really don't have the residents' best interest at heart. Those places are like old age homes and foster homes, where you sometimes hear horror stories. They're hard to trust. But then there are good ones, of course.
The best thing for an autistic adult is either to go on living at home or working and renting an apartment and living independently, but that isn't always an option.
Duncan · 112 weeks ago