We are just over one month away from National Diabetes Awareness Month in November. As someone who has made being educated about all things diabetes a priority, I’d like to start a Q&A series about diabetes on my blog. No question is off limits if it is related to diabetes. The point of this will be to educate and to hopefully dispel some common myths about Type 1 Diabetes. I don’t care how much or how little you know about Type 1, please feel free to ask questions. If I don’t know a definitive answer off-hand I will research it and answer to the best of my ability. My hope is to encourage people to ask questions, and to avoid making assumptions if they do not deal with diabetes first-hand. In addition to answering questions I will be giving away a mystery prize pack to one lucky winner (Est. value $20). Entries will be tracked using Rafflecopter and will run through Nov 30, 2014. Click on the link below to make sure your entries count! Options for entering include: Commenting on this blog post, emailing your questions to email@example.com, tweeting about this blog post and giveaway along with your question, liking “Chasing Lows” on Facebook. If you would like your question to remain anonymous please use the email option and state in the email that you would like to remain anonymous. All questions and answers will be posted over the next two months in separate blog posts. Please share this post with friends and family members. All are welcome to enter the giveaway by asking their own Type 1 Diabetes related question!
Okay, now that the day is almost over, here is what my day looked like:
Around 5:30am Angelina’s Dexcom alarmed high (over 250mg/dL) after being a steady line at around 130mg/dL since the night before. I hit the snooze in a semi-concious state and fell back asleep. I woke up about an hour later in a panic as I realized that I had snoozed a high bg and didn’t get up to investigate. So, at 6:45am I got up and at that point Dexcom was saying 366 mg/dL. I went to check on Angelina and she was not in her bed. She was awake on the sofa and acting like she was hiding something under her blanket. I pulled the blanket back to find her lying on my ipad, which had had a full battery when I went to bed adn now was at 6%. She apparently had gotten out of bed shortly after David and I went to bed around 11pm and had stayed up the entire night playing on my ipad. Around 5am she decided to eat muffins and not give herself any insulin for it. By 6:45am when I checked on her her meter blood sugar was 416 and she was insistent that she did not eat or drink anything, but was surrounded by muffin crumbs and an empty juice glass and a carton of juice that was half full the night before was sitting empty on the kitchen table. (Fortunately it was low carb juice, but half the carton was still probably about 20-30 carbs, certainly an amount that was worthy of needing insulin.
I yelled at her for lying to me about food and also about getting crumbs ground into our brand new sofa. This woke David up and he came out to speak with Angelina while I cooled down. He and Angelina talked until it was time for her to get ready for school and she left around 8am. Blood sugar at that point was down to 350 and falling quickly.
After she left David and I got ready for her 504 meeting at school and I had a sort of breakdown because I was going into that meeting to convince them that she is responsible with her diabetes, despite other areas where she does not always show responsibility and that she is perfectly capable of being mostly independent in her diabetes self-care during the day as far as checking her blood sugar when necessary and taking steps to correct lows or seek nurse supervision for giving insulin doses for high blood sugars or when she eats or drinks things with carbs in them. Clearly, last night/this morning she was not showing that responsible side that I was advocating for.
However, it became mostly a non-issue and aside from one fundamental disagreement, which was quickly corrected and remedied, the meeting went relatively smoothly and came out mostly in favor of the accommodations that we felt necessary for Angelina to get the best public education she can, while still not being so different as to be alienated from her peers. We are working very hard to balance diabetes care with “life” and maintain a semblance of normalcy without letting diabetes rule every aspect. The school of course mostly considers their liability if something were to happen to her and doesn’t factor in how their “standard protocols” effect her emotionally, and thus behaviorally and socially, which are all very important parts that also need to be managed along side the physical aspects of living with diabetes and being a student.
After the meeting I had some quiet time and had a little cry. I then headed to my therapist’s appointment, which couldn’t have been timed better. By the time I got to my appointment I was in a much better place, emotionally speaking, and I had a great conversation with my therapist about the happenings of the day.
I went home to relax and rest, stopping on the way to pick up some froyo. Around 2:30 David called me to tell me that a warehouse down the street from his work was selling a bunch of patio furniture at 90%ish off and did I want some chaise lounges for the patio? I had until 3pm to come with cash and the truck and his work is a minimum 20 minutes drive away from home. I miraculously made it there before 3 and we loaded the truck up with 4 new chaise lounges and a new patio coffee table. All for the bargain price of $80. This is all stuff that was stored to be sold at Home Depot from previous years and has since been discontinued and was never sold, thus the warehouse sale at deeply discounted prices.
After we got home we decided to go to Home Depot and check for cushions/covers for 2 of the chairs since they are metal slatted ones (the other two are the mesh style). No luck finding anything since it is now October and the seasonal section of every store is now filled with fireplaces and space heaters, not patio furniture and accessories.
We came home, ate dinner, and had an uncomfortable conversation with Angelina about being up all night playing on my ipad and not sleeping and what the consequences of her actions were. She had a bit of a “shut down” during the conversation and seemed to have fallen asleep. David and I took that time to put the furniture together outside and sat out in the patio for a bit. Angelina joined us until we all got chilly from the fog that had rolled in after the sun had set.
And here I sit, typing about my day. I feel… peaceful. Despite the turmoil, ups and downs of the day, I feel at peace with how everything turned out. I feel like diabetes was only a part of our day, and not the center even though the day started out in a way that could have been all about it. The high blood sugar was a nuisance, only because there was no reason for it and it interrupted my sleep. But, it was a “correct and move on” moment. The 504 meeting made me feel anxious, but in the end I was able to calmly and firmly assert myself on Angelina’s behalf and I left feeling like I won an Olympic gold medal. I didn’t leave flustered, frustrated or angry. I felt empowered and proud of myself for being articulate and keeping things together and speaking in a way that said I wasn’t taking no for an answer, without coming off as a crazy, overzealous and overprotective parent.
If you’ve read my previous posts, you know that Angelina started middle school this year. Middle school has brought with it changes in how her diabetes is treated at school, and how much she is able to do independently. We struggled last year to fight for her right for independence and honestly, we failed. As we moved into this school year I resolved to be a better advocate for her at school and to insist on more independence, regardless of what happened last year or what the school nurse’s opinion was. I also brought David along with me on the first meeting this year, as support, but also to show that we are united in this and even though he was the only man in the room, there’s something about a dad attending this type of meeting that seems to communicate “We mean business”. (More on the injustices of a patriarchal society later.)
I went into today’s meeting prepared to battle and was pleasantly surprised to find that it wasn’t totally necessary. Last year we had problems, not so much with the school administrators, but with the district nursing staff who seemed to think they understood our daughter’s needs better than we or her physician do. Who seemed to think that their interpretation of the doctor’s orders were the only correct ones, despite the fact that the doctor and I discussed the orders and *I* pretty much wrote them (read: told her what I would like them to say) and she added her signature for weight and authenticity. Yet, I was told that I did not know what the doctor meant, only the nurses did, since they are nurses. You can understand why I would be apprehensive going into this year’s meeting.
However, the district nurse supervisor has changed. And not only that, but the district nurse supervisor is also the overseeing nurse for Angelina’s school, which means we have only one district nurse who we have to deal with, instead of two. And she was AWESOME. I was nervous, certainly, going into the meeting. The nurse out both David and I right at ease and shared how she has twin 10 year old sons at home and she understands, from a parental perspective, how difficult kids this age can be. And then the meeting started.
First off, the assistant principal had another meeting to attend one hour after our meeting began so she was very concerned about time. Of course, she then proceeded to read last year’s 504 plan line by line rather than just diving into the changes that I had made to this year’s 504 plan and go over the things that were remaining the same. I will never understand when people say they are short on time and then choose the option of doing things in a way that takes the longest amount of time. We finally got around to the revised plan and discussed changes.
Something that became immediately apparent is that the current district nurse supervisor was not consulted before the AP made changes. Instead, she had consulted the nurse we had last year. And the changes they made were terrible. The first section essentially said Angelina couldn’t do anything on her own, which is not at all what the doctor’s orders said. The look on the AP’s face when I said “No. She will test her blood sugar independently. She doesn’t need to go to the nurse or to have the nurse come to her for that.” was priceless. She sputtered and then went to get Angelina’s diabetes care book from the school nurse (who was not in the meeting) that contained her doctor’s orders. Clear as day the doctor’s orders say “She is able to be independent with blood glucose testing, CGM trends and alarms.” Verbatim from the doctor’s orders. How anyone can get “needs to be supervised” out of that statement, especially after having this argument ad nauseam last year, is beyond me. And if there was a question, this line from the doctor’s orders should serve as further proof “Check blood glucose with meter brought from home or additional meter left at school. this meter should be allowed to be carried by Angelina.” It was even more humorous when the AP turned to the DNS and asked her to which the nurse replied “She shouldn’t need supervision for that. It clearly states in the orders that she may be independent. I have elementary kids who do this independently, it’s not hard.” Oh my goodness… where was this nurse last year? I sorely needed her. And that was that.
The rest of the meeting went rather smoothly. There were a few tweaks that the AP had made on top of changes that I had made. Some of them were changed back to my original revisions, others additions were kept. All in all, the meeting only ran twenty minutes late. We didn’t sign anything today because of the changes that need to be typed in, and then we will reconvene to sign everything. I just have to make sure to go over it all with a fine tooth comb because I noticed that some of the sections looked mostly the same but a few words were changed that totally changed the meaning.
On September 16, 2014 Angelina experienced her first ever concert. On a school night, no less. During one of the opening bands she and I decided to hang out in the lobby because I am getting old and the band was just NOISE. The music was actually okay but the “singer” just screamed random things into the microphone that were unintelligible and ouch, my ears. Angelina felt the same way, so maybe it isn’t just old(er) age, lol.
As we were sitting out in the lobby a couple came and sat near us and we struck up a conversation. Apparently the woman was a kindergarten teacher and told Angelina that she had the most awesome mom ever for bringing her to a Rise Against concert on a Tuesday. It didn’t feel so awesome when I had to try to get her up for school at 7:30 the next morning after we didn’t get home until almost 1am. Fortunately *cough* her site decided that it wanted to pull out at about the time she finally rolled out of bed and we had to do a site change which gave an “excuse” for being late, aside from “we were out late and she didn’t want to wake up this morning”, which would not be an excused absence. I only feel slightly guilty for finding some diabetes related thing to make an excuse for tardiness. But, at least it gave an honest excuse, right? I know, I’m a terrible mother. First I let my kid stay out till all hours at punk rock concert then let her be late for school the next morning because instead of just sticking a new site in, I actually did our normal EMLA cream routine that takes at least an extra 30-45 minutes, instead of telling her to suck it up because we don’t have time for EMLA cream. Of course, it had more to do with the fact that she had to get dressed and all of that so she might as well have a painless site since she was going to need the extra time anyway.
Also, Rise Against was awesome. This is what her diabetes thought of the concert:
And, not diabetes related, but concert photos, cuz, yeah!
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.