I cannot begin to express how I feel today. My only child started middle school. That’s enough to make any mother cry. I actually haven’t cried. Do you know why? Because I know she’s okay.
Middle school can be a tough time for any adolescent (I was going to say child, but that somehow seems like the wrong noun) add in Type 1 Diabetes to further screw with things and it’s a recipe for a bad situation. Last year I lived in constant worry about not if the school was going to call me that day but when the school would be calling me. Last year when Angelina started school she was on her insulin pump, but didn’t yet have a CGM and we were only barely five months into learning the ups and downs of her diabetes, and only one month into learning how to use her pump to maximize it’s effectiveness.
This year I could program the pump in my sleep. I can look at her blood sugar readings or CGM data and tell you whether she needs a basal adjustment or a carb ratio adjustment and I can tell you exactly where to change it to get the best results. Diabetes is still unpredictable but I rarely worry anymore about things coming out of left field and not knowing what to do. If she’s low, we give her sugar. If she’s high we give her insulin. If she’s still high after a couple hours I look at what she ate that might be causing it. If I don’t suspect food (particularly fatty food, which makes her insulin resistant for hours) to be a culprit we give a shot and change a pump site and check for ketones. If she’s sick or has to take a steroid medication I know that I am going to have to program a secondary basal program because she almost always needs more than the maximum temp basal amount allows. If she gets stung by a wasp, I know she’s going to be high for hours and need more insulin, but not too much because then she’ll come crashing down later that day. True story, by the way, but I didn’t panic, I knew it was okay to watch and wait. I knew it might effect her and it might not. When it did effect blood sugars, I took action.
This year, we have a CGM and we have been using it for 7 months. The CGM is great for her for school because it gives clear indicators of when it’s time to visit the nurse, or if it’s okay to just chew on a glucose tab in class. Even better for the both of us is that we have CGM in the Cloud. We have only been using it since the middle of July and she was at home on summer vacation with me. It did come in handy the few times I needed to run some errands and she was either sleeping or didn’t feel like going to the post office and the grocery store (I don’t blame her!) and I could keep an eye on things.
Today has proven to me how very valuable this DIY technology is though. This morning, I saw when she hit 290 after breakfast and know that tomorrow I need to bolus her a little different and possibly change her carb ratio. Over the summer she slept in every morning so breakfast at 8am didn’t happen and her breakfast ratio at that time was more for show.
And I was able to see this 30 minutes before school got out and she had to walk the half block home.
This is important because her CGM low threshold is set at 75. Since the CGM reads interstitial fluid instead of blood it doesn’t always tell the same story that a fingerstick does. She’s not actually considered low until she’s under 70 mg/dL on her meter, but when the CGM is considered accurate if it reads within 20% of the meter number that can sometimes mean that she is lower than the CGM lets on. With this data pictured I was able to call the school nurse and ask her to call Angelina’s classroom to have her chew a glucose tab so she never actually went low. Without the CGM in the Cloud Angelina wouldn’t have sought help until she hit that 75 reading on the CGM.
The reason behind not just setting her low threshold higher is that sometimes an 80 is a great blood sugar to have, for instance if she has a steady glucose trend, and we don’t want her treating a low that isn’t really a low because that has the potential for glucose levels running higher than necessary and causing complications down the line. But, a 90 reading with a downwards arrow means that she may drop 30 points in 15 minutes if she doesn’t take action to correct the direction things are going. A downwards arrow and a blood sugar under 100 means a low is imminent. Sometimes it will resolve on it’s own, but not usually, especially if the downwards trend has been ongoing, as it was in this case.
There is a downside to the CGM in the Cloud. At this stage it is purely experimental and totally “at your own risk”. There isn’t a user manual and a dedicated tech support line to call. There is a lot of knowledgeable parents and people with diabetes who have worked to develop this technology,as well as a growing community of users who are supportive and innovative in their own right and willing to share their experiences to help others. Today the Facebook group CGM in the Cloud reached over 5,000 members. There are people all over the world who are not waiting for the device manufacturers to come out with this technology. They are setting it up themselves and having it today because #wearenotwaiting.
If you are a person with diabetes or a caregiver for a child with diabetes who uses a Dexcom CGM and are interested in this DIY technology please visit the Facebook page “CGM in the Cloud” or for instructions on how to get started visit http://www.nightscout.info/
Edit: I am not a part of the original group of developers for CGM in the Cloud AKA Nightscout. I also am not being compensated for my glowing review of this experimental technology. I am simply a parent who was tired of waiting to be able to access my child’s real-time data from anywhere. I am a parent who is benefiting greatly from this technology and whose child is benefiting, in more ways than one.
School starts back up in less than a month. School administrators and office staff will be back in the office in a week. I have been busy updating Angelina’s 504 Plan for… MIDDLE SCHOOL!!!
Lots of changes to the actual accommodations based on issues that we had last year. I also completed re-organized the sections and down-sized some of the sections that were overly wordy. David suggested that I write a summary of the accommodations to accompany the entire actual 504 Plan, but we agreed to disagree about the effectiveness of this method. I have written a generic “letter to the teacher” that accompanies that Quick Reference Emergency Plan and outlines some of the basic day to day expectations of diabetes care. However, it is my feeling that an actual summary of the 504 Plan itself would only serve to be an easy out for anyone who doesn’t actually want to read the entire document. There is no way to paraphrase the accommodations that are in the Plan without leaving out important information. I understand that if teachers or staff do not read the whole document then we are more likely to see the plan not being followed, but my feelings are if I provide a summary that doesn’t contain all of the information it is essentially giving them permission NOT to read the whole 504 Plan and we are definitely not going to see the following all of the accommodations.
I also don’t know how to “shorten” the plan without leaving out accommodations that I feel are necessary and I know from our experience this last year that if it’s not in writing in explicit detail they will try to get around it or interpret the instructions a different way than what they are meant. Since Angelina is starting middle school she will be at a new school site this year, however we will still be dealing with the same Supervising District Nurse who is the person that gave us the most problems about wording and explicit detail last year. She is also the one who chose to only follow the parts of the doctor’s orders which she felt were necessary or were “earned” such as blatantly denying Angelina the ability to test blood sugar on her own, despite the doctor’s orders stating that Angelina could carry her meter and was capable of checking blood sugar independently. However, since the orders didn’t explicitly say “Angelina may self-carry meter and test independently in any location” the SDN decided that she could carry and test independently in the office ONLY.
We also have to consider new accommodations for her new CGM in the Cloud setup and implementing that into her care at school, hopefully also increasing her independence and time in class.
I’m not playing around this year. I’m not going to sit back and let them stomp all over the doctor’s order and the agreed upon 504 Plan without a fight. Even if they don’t initially agree to the changes I have made, her prior year’s 504 Plan will still be in effect and it was agreed upon in that plan that she would be able to carry her meter and test in any location. I will also make sure that when we see the Endo on Aug 7th that it is written explicitly in the orders that she can carry and test in any location, at any time. I have an ADA rep’s email address and phone number and this year I am not afraid to use it. I’ve already told David that if they give me a hard time I will be contacting the ADA and I will be bringing an advocate with me to the school. The only reason I didn’t this past year is because he felt that I was being overzealous and unreasonable and that if he backed me up things would get better. Except they didn’t.
I shared yesterday a sneak peak of Angelina’s dexcom trend line in the cloud. I’ve been asked by a few people/friends how the setup went? How long did it take? Was it hard? Do you think I could do it?
I am here to answer your questions!
We got back from vacation in Florida on July 8. One of my local d-mom friends had posted in our local group about how her husband had spent the weekend setting up CGM in the Cloud for their son and how happy she was with it and proudly displayed a photo of her wearing the pebble watch with CGM trend on the face. I had heard about the cgm in the cloud project and had previously joined, then left, the Facebook group when I realized it required having a data connected android phone. The reason for this being a “no” for us is: money. Pure and simple. However, said friend says “We got the Boost Moto G at target, $99 and hooked up with Ting for $9/month”. Say what? Still a little out of my price range, but I was chomping at the bit to have this for Angelina so I rejoined the CGM in the Cloud Facebook group. Meanwhile, another friend from the local group posted about how they are getting a new Dexcom system to replace their currently out of warranty and not covered by insurance one and she is going to hook up to the cloud. This sparked input from several of her friends who mentioned various sales and coupons/discounts. Specifically Target had Boost Moto G on sale for $59.99, plus 2 day only(!) Target cartwheel app has 15% off any electronics purchase, ending the day I am reading this thread (Monday).
Angelina happened to have a dr’s appointment just around the corner from Target, so I decide… let’s go see. I stand in the pre-paid phone aisle at Target staring at all the different phones. They are out of the Moto G phones (*cry*), and besides it does not show it marked down to $59.99. Regular price only, $99.99, out of my price range. So, I look at the other two options: Kyocera Hydro Edge for $49.99 or Kyocera Hydro for $29.99. I do not know for sure that either of these phones are OTG capable, which is a requirement to be able to use the phone as an uploader device for the dexcom. I inquire about return policies and am told I have 30 days to return any product, with receipt, regardless if it is open or still sealed. I decide I will buy cheapest option and keep fingers crossed that it is OTG capable. Why spend more money when I can possibly pay $20 less? Total cost after cartwheel: $27.40. Totally do-able.
I then have to decide: Do I want to wait to order cable from Amazon? Cheapest option may take 2 weeks (or more) since it is coming directly from China. I have not had good experiences ordering very cheap cables directly from China. Wait 2-4 weeks for delivery only to discover cable does not work or is faulty. Get refund, repeat process. Nope. So, I head to Radio Shack thinking they will have cable. Walk in, ask for OTG cable. Very nice salesman says “Sorry, we do not carry those. But… I had a buddy who was looking for one last week and he called around and the only place who has them locally is Fry’s Electronics.” YES! Fry’s is (sorta) on the way home. Bonus: they have 20 in stock and they are $5.99 which is $4 less than the not-from-China options on Amazon that were available for Amazon Prime 2-day shipping.
Go home with my loot, all the while explaining to David that total set up is in lieu of upgrading to newest expansion of World of Warcraft that he did recently and I was contemplating. CGM in the Cloud is currently more exciting/fun for me than WoW. He does not understand, thinks I am crazy, thinks this is unnecessary. He is not the one who obsesses over Angelina’s blood sugar readings, or is constantly fighting with her to get a peek at her Dexcom. Or feeling like diabetes is the center of the universe when I have to ask her what her BG is when she walks in the door from playing at the park, or school, etc. That is a whole other discussion, but the fact of the matter is that “What’s your BG?” is often about question number three when she walks in after being away from me, but it is asked far too often and far too often creates tension between us. I don’t want to ask her about her BG 2785 times a day but she’s 10 years old and doesn’t pay attention to her BG a lot of the time, until it becomes urgent/emergent instead of heading off high or low trends before they get to that point. Now I can obsess over BG numbers without disturbing her. When school starts next month, I can look at her trend line at any point during the day and not have to obsess and wonder what is going on. I can go to the store and not have to worry about getting a phone call that she’s low in the middle of shopping for broccoli, because I will be able to look at her trend and say “Maybe now is not the best time for me to be so far away from her school.” I will also be able to see what her BG is at the end of the day when she is walking home from school and know whether or not I need to go outside to watch her walk home (Her new middle school is half a block down from our house!) and/or go over there to meet her and walk her home.
More immediately I can let her go to the park across the street and not wonder if she’s checking her Dexcom periodically to avoid going low. And I don’t have to call her to ask her what her BG is, because I will be able to see it. And I can call her and tell her she needs to eat a snack, instead of just blindly saying “Come home NOW, because I don’t know what’s going on.”
But I digress. In the end David sighed at me, said it wasn’t about the cost of things (“By the way, how much did you spend?”) more just that he feels it’s unnecessary and will potentially cause problems with school, because look at what we went through last year with less tech-y tech options. (You can read back through some of my posts for more background on that struggle with her elementary school.) So I set to work following the DIY quick-start guide for the cgm in the cloud called Nightscout**(See note below for updated information). I will tell you that I am so-so at tech-y stuff. I am better at figuring out software stuff, not so good at development, coding, back-end stuff. Of course, setting up CGM in the Cloud requires a little bit of both, although less than it had originally seemed when I first read through the instructions. It all made a lot more sense when I was actually doing the things step by step as I set up our system, rather than just reading the directions and trying to figure out what it meant inside my head. It still took a while.
I did run into a few snafus, which were helped by using the wonderful search function on the CGM in the Cloud Facebook group. Every single one of my issues had been experienced by at least one other person who had done this before me, and all helped to resolve my own issues. Some of the things I figured out on my own with the help of the almighty Google.
I finally got everything set up on my computer and come to the moment of truth when you finally connect your android uploader device to the computer to install the app that you’ve just made and not realized you were making. “USB device not found” WHAT!?!?! This took me a long time to troubleshoot. Finally got it resolved, got the app on the phone, plugged in the Dexcom receiver and… nothing. Just nothing. It did nothing. Turns out the $29.99 Kyocera Hydro was not OTG capable. Had I searched the CGM in the Cloud group prior to starting this whole process I would have quickly discovered that I could easily determine if the phone was OTG capable by the fact that when the Dexcom is plugged into it, the Dexcom would start charging. It didn’t. So, after about 5 hours of working on this project at that point, I headed back to Target at 9pm on Monday night. Only this time I went to a different Target because I knew I needed the Moto G. Fortunately our local Target had ONE Moto G in stock and let me exchange the Hydro. Then I got ice cream for my family, per David’s request.
I headed home, knowing that I was so close to being done. Fortunately, since I had already done all the hard techy stuff on my PC I pretty much just had to install the Motorola Device Manager/drivers onto the PC and plug the phone in and load the app onto the phone. OR so I thought. I finally entered all the data streams into the app and waited. It should be working. But it wasn’t. The phone was getting the Dexcom readings and showing them on screen (awesome in itself) but it wasn’t uploading them to the database in the cloud. Why not? I couldn’t figure it out. I search the Facebook group for answers. I typed and retyped the path. Finally, 2 readings! Then on to the fun task of figuring out Microsoft Azure.
Azure gave me some problems too because I really did not understand ANY of it. I didn’t even really understand what any of it meant, I just followed the directions. Configuration strings? Huh? What the HECK is a deployment? Am I supposed to do something with this fork? (And not the eating utensil) Is there a magical hamster somewhere in here that is configuring this data to my site specifically? How does that work? Shouldn’t this data be showing up on her website by now? No. It wasn’t. It should have been, but it wasn’t. I found some magical thread that said to add a /command on the end of the web address and it’s supposed to show you some data thing (which I really had no idea how to decipher), and if it shows this, it means it’s working. But if it shows this, it’s not working. Well, it showed the data that said it was getting the readings from the cloud database, but still all I am getting on the website is several grey – – -. At this point it’s midnight, David is in bed asleep and I had been working on this (mostly) since 4pm. I say mostly because I did take a break to eat dinner, plus my last minute trip to Target and to get ice cream. I was tired, nothing was making sense and I hoped that everything would fall into place in the morning.
Fortunately, in the morning everything fell into place. One single thing was typed wrong and trying to pull data from a different collection than the phone was sending it to. I fixed that, but still no data on the website. So, I decided to “sync” deployment. Please, magic hamster, help me! And then…
Voila! All my hard work paid off. Total time: approx. 7 hours. Monies paid: $70.66 (moto g phone, OTG cable, $9 wallet/case.) We are currently running the uploader device on wifi only. We also have personal hotspot capabilities on all of our iPhones (including Angelina’s) that should allow her to connect the uploader to her data plan connection for no additional cost. Value: Priceless
**Edit 8/20/2014: Since I wrote this post I have gotten a lot of traffic on my site from people using the search term “CGM in the Cloud”, etc. I just wanted to update that the developers of the CGM in the Cloud/Nightscout have since streamlined and further uncomplicated the set-up process for new users. You can access this new getting started guide at: http://www.nightscout.info/
If you read my blog because we belong to some of the same T1 groups then you have probably seen me posting about flying for the first time since Ang’s T1 diagnosis last year. Or, my paranoia about being strip searched by the TSA for putting juice boxes in our carry on bags. I am here to tell you that it was all for naught!
I have been so stressed out about what to pack for our trip as far as diabetes supplies and worried about “Is this going to get us in trouble?” “Is this going to have to be thrown away at the security checkpoint?” I now have the answers to those questions! NO! Just no!
We left Los Angeles Monday evening after a quick curbside good-bye as my husband dropped Angelina and I off at the airport. I was a little disappointed because apparently the terminal we were dropped at didn’t have a skycap so I had to attempt to maneuver our giant suitcase (which I miraculously managed to get to weigh just under the 50 lb limit. It weighed in at 48.6) while also carrying a giant purse, a giant backpack full of electronics, a carry on suitcase full of medical supplies, and corral Angelina! We waited in line at the airline desk for what seemed like forever, but finally we were on our way to security.
I made a point to tell every TSA worker that we came in contact with that my daughter had T1D and that I was carrying medical supplies. Of course, I didn’t need to and I kept being told “Tell them at the front”. We finally made it through the (very narrow and anxiety inducing) line up to the conveyor belt. Fortunately we got cleared into the TSA pre-check line which means I didn’t need to take anything out of any of our bags and we both got to keep our shoes on! I told the gentleman that my daughter was T1 and that this suitcase was filled with medical supplies, including liquids. He talked to the person running the scanner and let him know then directed us to the line for the metal detector. I will stop here for a minute.
This was a big source of my anxiety. We fly out of LAX and I sort of figured that if any airport had the AIT (imaging) machines, that it would be there. TSA rules say that if you refuse the AIT you have to get a patdown. You can’t choose the metal detector if you are supposed to go through the AIT unless you are physically incapable of standing with your arms above your head for the 7 seconds it takes them to scan you. So, I had given Angelina an early heads up that she might have to get a pat down. LAX does have the AIT machines, but apparently they only do them for some people and most people still just go through the metal detectors. Woo! Was I happy to see that we didn’t have to go through the AIT. However, when we got up to the metal detector Angelina was in front of me and the guy stops her and says “What’s that under your shirt?” So she lifts up her shirt and starts explaining about how she has diabetes and it’s a machine for her insulin, yada yada yada. Angelina tends to be long-winded (wonder where she gets it from? *wink*) so I was just like, it’s an insulin pump and braced myself. The guy says, okay, go on through and then stand right here and points to a spot to the side after the metal detector.
She walks through, no beeps. I walk through, no beeps. We stand to the side for a minute and a lady comes with a little piece of padded cloth, swipes it over Ang’s hand and sticks it in the machine then says we can go. We walk over to the conveyor belt, grab our stuff and we are on our way. No questions, no bag inspection, nothing. All of my worrying was for nothing. The whole experience was actually LESS stressful and intrusive than the last 3 or 4 times that we have flown since I didn’t have to separate out my bag of liquids and take off my shoes, etc.
The hardest part of the whole experience for me was waiting in the chute. I am a big girl, and I am also prone to claustrophobia, so to be stuck in a partitioned line that is just wide enough to accommodate our rolling carryon suitcase, while wearing a big backpack, a big purse and said suitcase and trying to keep Angelina from knocking into things/people with her backpack was very uncomfortable. But, we made it!
The flight is a different story. Overnight flight with a very excited 10 y/o makes for a very exhausted mom who got zero sleep in over 24 hours. Add in a 3 hour time loss and I am just very glad that I know what to expect for our return flight. It should be easier. David will be with us to help and it’s a daytime flight where we gain time instead of lose it.