A little education. Sugar Bear's blood glucose target range is 80-150 (so is Drago's). Anything under 80 is considered a low and must be treated accordingly. Sugar Bear had three seizures last year in the 60s-70s. He is now developing hypoglycemia (low blood sugar) unawareness. He doesn't feel his lows. The lowest he has been has been 38. That is a super scary low. Severe lows, anything under 55, is dramatically affecting the body. The body's organs can shut down. Seizures, coma, death are a very real concern at those levels. Some lows are what we call "sticky lows" which are a challenge to bring back up in range. You can treat with a fast acting 15g of carbs like juice, wait fifteen and have it drop or not budge. Recently we have had more of these episodes with Sugar Bear. They are scary and exhausting. And you have to stay vigilant even if it is 3am and all you want to do is sleep. A tool in the diabetes world that is truly a life saver is a continuous glucose monitor (CGM) one brand being the Dexcom. A CGM is attached to the body and measures the sugar in the interstial fluid in between the fat layers in the skin. It is not as accurate as a finger blood stick so we still have to do those. But the CGM will give trends with an arrow. So if you are dropping or dropping fast the arrows will show that. It can help you head off a severe low. It can literally save a life.
Now the rant. When Drago was diagnosed he had a lot of anxiety associated with going low so we and his counsellor and doctors felt a CGM would help. We put in the request, sent in his numbers (60 days worth--every day since diagnosis). At that point he'd never had a low lower than 60. And he feels his lows. His Dexcom was approved immediately and we put it on him May 27th. On May 28th we called the endo to start the process for Sugar Bear to get one. Somehow the paperwork got "lost" between the endo and the intermediary for insurance and Dexcom. We surmise that somehow the intermediary company thought it was a request for the same child and tossed the paperwork. By the time we figured this all out it was the end of June. We resent the paperwork but somehow the insurance request didn't get to them until July at which point their criteria for approving a CGM had changed. Sugar Bear's logs of lows (more and lower than Drago's) were not sufficient for an approval. The letter we received stated he had not had enough severe lows or hypoglycemic unawareness, that it was unnecessary! So now we are in the appeal process. Sugar Bear did a week long trial wearing a Dexcom and yesterday our nurse informed us the Dex showed four severe lows (below 50) for the week. It is weird that that made us "happy". That that might be enough to get a tool that could help us keep our son alive and healthy. It makes me so angry that we have to jump through these hoops. That I have to be an angry mama bear protecting my cub from an insurance company that has never even met us in person let alone knows what my boys go through. I'm ticked. It is not right that our insurance companies can dictate what medical procedures and/or devices can be used even though they are recommended by our doctors, doctors that have seen us, doctors that personally know our health issues. Something needs to change. I worry about my boys when they are grown and on their own having to continually fight not just to stay alive but to make their insurance companies understand the need for their life saving medicines and devices. Healthcare in our country needs an overhaul. It is a broken system that just seems to get even more broken. Maybe we should just run away to Ireland or another country like it, where insulin is freely given and devices are approved more readily....where life is important, not the almighty dollar. So we'll keep on testing and hoping we're in time, with a juice box readily on hand.