I haven't posted in a while. In years. I ought to go back and read all my posts from the beginning but, truthfully, I'm not up for relieving all of that right now. I don't want to feel all the feelings.
My little guy is now 7 years old and is grade 2 in a what is called a developmental disability class within our local school board. There are 8 kids in his class, 1 teacher and 2 assistants. For the last 8 weeks his communication book has said comments like the following:
I work full time. My husband works full time. We also have a daughter who is struggling a bit in school. I'm secretly worried she has CTD but haven't had her tested for fear of the results. Private behaviour therapy might be our only option but, logistically, how would that work? Do parents of a special needs child need to quit their jobs? We could manage on one salary but the thing is, I *like* my job. I like the mental break and intellectual stimulation that work gives me but at what cost?
The weekends are non-stop. I'm totally burning out. Yet all around me people don't talk about this. They just talk about all the therapies they're doing and how much their child is improving.
My guy has made great gains, no question. He speaks quite a bit now (usually single words but sometimes two-word combinations), understands routines and directions, is social and a great sleeper (I am SO thankful that he is a great sleeper). But the meltdowns, the tantrums, the throwing food, the throwing dishes, the hitting, the screaming, the "yard sales" (where he takes off most of his clothes and shoes and throws them if he doesn't get his way, usually when we are in a public space) - it's all just too much right now.
He is still on a really small dose of phenobarb but he hasn't had a seizure in 4 years. We need to get him off of the medication and have an EEG scheduled with his neurologist in the new year. A sleep deprived EEG so that should be a fun time. We stopped his arginine-glycine-creatine-SAMe supplements in the spring of 2014. The main reason we stopped is that we felt the testing was bordering unnecessary. He had to have kidney GFRs twice a year, annual overnight EEGs (OMG they were awful), annual MRI (requiring general anesthetic) and annual lumbar puncture (also requiring general anesthetic). If we thought that maybe the supplements were truly working, then we would have carried on. His developmental paediatrician suggested we stop the supplements for a short time to see if we notice any change in him. We noticed none. We waited another couple of months. Again, no changes on or off the supplements so we pulled the plug. No regrets.
We tried medication to treat his hyperactivity this summer which was a bust. We will try again in the new year. It's called Biphentin. Does anyone have experience with this?
Given my 3+ year gap in posting, I have a lot to catch up. I'll write more about Lumos and Cyclocreatine in another post.
I'm also happy to report that I've met many more Creatine families through this private Facebook group.
My little guy is now 7 years old and is grade 2 in a what is called a developmental disability class within our local school board. There are 8 kids in his class, 1 teacher and 2 assistants. For the last 8 weeks his communication book has said comments like the following:
He had a not-so-bad day today
He was hitting other students
During library he threw books
Today he threw an iPad across the room and broke it
He had trouble with transitions todaySo. Yeah. It's clear to me that they are passed the breaking point and, some days, I feel past the breaking point as well. There are very limited support services at the school due to no funding. He doesn't qualify for speech therapy because he doesn't speak enough. There are no behaviour therapists available to us through the school system. He *might* qualify for behaviour therapy if he had an autism diagnosis which he doesn't have (and we've tried, we've had him tested twice and he is not on the spectrum).We aren't permitted to have private therapists in the school because it goes against union rules.
I work full time. My husband works full time. We also have a daughter who is struggling a bit in school. I'm secretly worried she has CTD but haven't had her tested for fear of the results. Private behaviour therapy might be our only option but, logistically, how would that work? Do parents of a special needs child need to quit their jobs? We could manage on one salary but the thing is, I *like* my job. I like the mental break and intellectual stimulation that work gives me but at what cost?
The weekends are non-stop. I'm totally burning out. Yet all around me people don't talk about this. They just talk about all the therapies they're doing and how much their child is improving.
My guy has made great gains, no question. He speaks quite a bit now (usually single words but sometimes two-word combinations), understands routines and directions, is social and a great sleeper (I am SO thankful that he is a great sleeper). But the meltdowns, the tantrums, the throwing food, the throwing dishes, the hitting, the screaming, the "yard sales" (where he takes off most of his clothes and shoes and throws them if he doesn't get his way, usually when we are in a public space) - it's all just too much right now.
He is still on a really small dose of phenobarb but he hasn't had a seizure in 4 years. We need to get him off of the medication and have an EEG scheduled with his neurologist in the new year. A sleep deprived EEG so that should be a fun time. We stopped his arginine-glycine-creatine-SAMe supplements in the spring of 2014. The main reason we stopped is that we felt the testing was bordering unnecessary. He had to have kidney GFRs twice a year, annual overnight EEGs (OMG they were awful), annual MRI (requiring general anesthetic) and annual lumbar puncture (also requiring general anesthetic). If we thought that maybe the supplements were truly working, then we would have carried on. His developmental paediatrician suggested we stop the supplements for a short time to see if we notice any change in him. We noticed none. We waited another couple of months. Again, no changes on or off the supplements so we pulled the plug. No regrets.
We tried medication to treat his hyperactivity this summer which was a bust. We will try again in the new year. It's called Biphentin. Does anyone have experience with this?
Given my 3+ year gap in posting, I have a lot to catch up. I'll write more about Lumos and Cyclocreatine in another post.
I'm also happy to report that I've met many more Creatine families through this private Facebook group.
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