Here’s our update:
- 2010 Official autism diagnosis – had been seeing therapists and more before that for a few years.
- has been on risperidone since at least 2010, but maybe longer. We were told in the beginning that it can cause blood sugar issues and to be tested every 6 months.
- in 2013, we were in pre-testing for a drug trial for autism meds. They discovered her very high blood sugars and sent us for more testing.
- her A1c came in at a 9 on the overall scale which scared the doctor and us.
- we immediately went to a low-carb diet based on what my sister in law provided information about. She is also pre-diabetic and has gone through it herself. (we made lots of substitutions for things like ice cream, breads, ect. ) rather than do a cold turkey meats and veggies only diet.
- we immediately started insulin injection once per day, with added injections during the day (I don’t remember now what they are called) based on what she ate.
- She was tested at least 3 times daily in the first year and a half, both at school and at home.
- 2 of her A1C numbers from that first year (2013) were 9 and then 7.
- The 7 I attribute to being more relaxed than the first visit, and to the combination of meds and low-carb foods.
- 2014 – I don’t have her A1C numbers in front of me, and her doc didn’t either because the doc moved agencies last year. But, I remember them being in the 6 – 7 range. Nothing too scary ever came up again in an A1c.
- We continued the low-carb diet – or lower carb diet.
- She was still on Risperidone, but we decreased dosage amounts over the year.
- 2015 – Quit Risperidone before or shortly after end of school – so about 2 months now.
- Her last A1c – 3 months ago or so, was at 6.2 (before end of risperidone)
- Today’s A1c – 5.2 (after being off risperidone for a couple months.)
- She is only taking 2 pills of metformin daily at the lowest dosage.
- summer camp does not do low-carb diet and we are slacking at home too. Quite a bit of junk food, not much exercise, but she’s still doing really well.
- Doc says we can ween off metformin too if we want. I’ll probably wait til school is back in session though.
I believe with about 90% of my heart/mind/experience that getting her off the Risperidone has made the difference here. Everything else has helped, though.
Disclaimer: I am not a doctor or medical professional at all. I cannot tell you what is best for your family or yourself.
However, there is little or NO information about managing diabetes for someone with a mental or emotional delay or disability. Her diabetes doctor verbally admitted to me today that she doesn’t know much about autism. For that reason alone, I share our story.
Without the help of someone who could point me toward a safe low-carb diet and all the substitutions that would help keep my kid happy, we might not be where we are today.
Without a very understanding psychiatrist who actually wants to see less meds given to our kids, we might not be where we are today.
How we do it:
My reader says her family member has high blood sugars but they can’t test him very often due to behaviors (avoidance, fear).
- Everything I’ve been told is that a 70 is too low and a 180 is too high. But, Nove gets numbers above that sometimes, depending on what she ate.
- We’ve been told to test at 2 hours after a meal, which is why sometimes I test after she goes to sleep because she eats late or has a snack before bed.
- I usually test first thing after she wakes up in the morning, before she eats, which is her fasting number.
- The school tests her about 2 hours after lunch and breakfast.
My reader says her family member sneaks food, and experiences life through food and that the family eats out often. He’s also of age and will get out of the house to buy food or drinks.