For parents of children with Type 1 Diabetes, sleep is anything but restful. Remember diabetes is a 24 hour disease you never can take a break from it. Their blood sugar can go really high or really low quickly.
Being connected on facebook lately I have been hearing about more and more kids and adults, Type 1, dying of "Dead in the Bed Syndrome." JDRF even had a eye-opening statics that 1 in 20 kids, with Type 1, will die from Dead in the Bed Syndrome. It is heart breaking, but it is realty.
When we were diagnosed they told us check her before she goes to bed, at midnight and then once more before morning. You would not believe the number of lows I have caught in that in-between time, when she is suppose to be safe. In reality I checked her at LEAST every 2 hours when she was sleeping, more if she was low or going high. Lucky for me she sleeps through most of the checks. The checks have decreased a little since she is on a CGM, but I still have to walk down to her room to either check her pump to see the number or do a finger stick. Her pump because it is connected to a CGM does alarm when she is going low or is high, we set what numbers it alarms at and how often. After alarming so long it will alarm longer and then vibrate. Guess what? She sleeps through ALL of it. So scary to think that it is telling her to get up you are low!! We have tried several different things for me to be able to hear the alarm down in my room. We have tried a baby monitor in her room. That works okay but if there is static or if she is sleeping on the pump I might not be able to hear it. So the next step was to get a wireless microphone and put it in her pouch and then put the receiver and speaker on my nightstand. That again works okay. But I hear every time she moves and there is also static. Plus the microphone uses batteries that can die, finally had to do rechargeable, and they ALWAYS seem to die in the middle of the night. There are some nights that I am just so tried of walking down to her room to check her because she is low or on the way back up, that I just stay there and sleep with her.
Okay not sure if anyone remember but she is almost EIGHT years old! Not sure how much longer she is going to be okay with a baby monitor, microphones or me sleeping with her. And I totally don't blame her.
Yesterday, a product that will help nighttime was FINALLY approved. This product has been in the works for over 3 years with the last 18 months or so waiting on FDA approval. Here is a link to the product.
Brianna has the Minimed Revel pump as well as the CGM. So she is able to get this product.
The name of the product is mySentry. When reading about it and what it could possible do, just brought me to tears. Being able to sleep at night in my bed and being able to look over and see what the CGM graph is doing is priceless. Actually being able to hear an alarm and respond to it quickly before she gets too low or high, priceless. Being able to have this device when she is in the house and not having to constantly ask her what is your number, priceless. Priceless for what it can do, but guess what it is EXPENSIVE!! Seeing how it just came out on Jan. 4, 2012, insurance companies may or may not cover this item. We are right now trying to see if ours will cover it. If not we are probably going to buy it, regardless of the high price tag. I NEED sleep, I NEED to be able to keep my daughter safe at night.
There is also a video about parents that have tested the product out and loved it. Hearing them talk and their son talk, was amazing. I always want Brianna to feel safe.
So when you put your kiddo to bed at night and say "See you in the morning" consider yourself lucky. When I tuck her in I always tell her I will be back shortly to check you.
Hopefully one of my next posts will be of me explaining about how mySentry is working for us. It might be a few months though. I e-mail her endo yesterday and she said it would be a few weeks before they would write for it because the rep from the company has not talked with them about it yet. I e-mail the rep and he said they are just learning about it now so they can talk with the hospitals and doctors offices. Then the company reps have to talk with insurance companies to explain why this product is necessary for people and kids with T1 to have. It is all a process that takes way to long! And yes this does need a prescription. Why I have no idea, but it does.
I love reading your comments so please post :-)
I love the concept...but hate the price tag. I've had a day or so to reflect, and I'm kind of ticked a little.
ReplyDeleteI would agree that a good night's sleep is priceless, but there's NO WAY we could spend $3000...in addition to copapys, in addition to trying to send her to camp, in addition to gluten free food...that would pay for our entire family to go to FFL this year! And for her to go to camp for the next 4 years!
Anyway, I'm worried about the desperate people who rush out and buy it...and then MM dropping the price because it's not being bought off the shelf fast enough since most families probably can't afford it.
Meanwhile, I wonder how many children's lives could be saved with $3000? That's a lot of insulin. Those parents go to sleep every night and don't know if their kids will wake up the next day either.
It's cool. VERY cool...but I really hate seeing such a blatant price gouge geared towards sleep deprived parents -- especially by a company that has already made such a huge profit off of our children's misfortune :(
Kelly, you may have tried this, but I know drug companies would love having an endo on board...I SO relate to the process as I have launched a ton of products in my days with pharma and consumer goods. Call the company back...keep calling...tell them what your endo said and who...they have likely already identified high volume docs and what we called "early adopters" meaning those most likely to write the new product. Let them know what an advocate you are and how you can and will spread their word including continually to your endo, other moms, your insurance company etc.. Someone will want this to happen...they can speed it up for you. As long as the product is available...at a store/pharmacy, there is no reason doc can't write it. Company may be able to help with price too. Sometimes as simple as the doc knowing how to write the script.
ReplyDeleteI've been dreaming of this since Wednesday. Ironically, that night Nora was 47. She was sleeping on her pump & I didn't hear it alarming. Luckily, my eldest daughter, 17, has moved into her room so that she can hear her sisters alarm & come get me downstairs. That night she saved her sisters life. A little dramatic? Maybe but how many times do we say that? Many...too many. So I consider this cheaper than a DAD. For now, I'll wait a few months. Price may go down, insurance may cover it, I may win the lottery & then buy them all for all the D kids. What a great technological advancement!
ReplyDeleteKelly, I'm with you...the safety that the mySentry offers is priceless to me! I do agree that the price tag is ridiculous and taking advantage of desperate parents.
ReplyDeleteI got a tear in my eye when I read that you say, "I'll be back to check you" instead of "see you in the morning." ME TOO! And I just realized that.
Oh geez.... Sleep. I love sleep. I miss sleep.
ReplyDeleteI think this is an exciting product! I'd love to have one to go with the Dexcom. I'm wondering if it will be at all covered by insurance. It is really expensive- but it's cheaper than a DAD!!
For us- wow. I'd love it! Ever since Sweetpea's seizures that night due to a bad low, we sleep with her. It's so much easier to roll over and check Dex than get up. And I always hear it if I'm right there. I sleep better- and I've GOT to sleep to be able to get up and go to work. So it's what we do. Boy, a remote feature would be nice!