Take A Deep Breath and Count to 10

Back in December one of my favorite D-moms posted an article about diabetes and depression in children.  It is an anonymous D-mom’s story about her 11-year-old son suffering from depression and ultimately ending up in a psychiatric hospital for stabilization.  The story touched me in many ways, at first because I have a child who is 11.  Second, because I’ve personally had the experience of spending some time in a psychiatric hospital for severe depression.   The story made me feel very deeply for this family because it was hard to imagine watching my own child go through this same sort of downward spiral and not fully realizing exactly how deep that spiral had gone.  And then having the added fear of not only hearing your child say they want to end their own life, but then also trying to make arrangements for them to be safe, when everyone you talk to at the facility they are going to doesn’t understand or know how to manage their diabetes.  And because your child is depressed and suicidal they can’t manage their own care because, in case you didn’t realize it, too much insulin can be a deadly.  Lack of insulin can be deadly. Having suicidal thoughts and not getting proper treatment can be deadly.  I don’t want to even think about how helpless that mom must have felt having to make those arrangements.

A few weeks before this article I had been growing increasingly concerned about Angelina’s mental health.  Her therapist had also expressed some concern about her moods and was concerned about depression.  She had become more withdrawn in her therapy sessions and about every third session she wouldn’t speak at all, but sit and sulk.  At the beginning of January we met with her psychiatrist (who prescribed medications for her ADHD) and I had briefly mentioned we were concerned about depression and requested that she reach out to the therapist. I signed a release form and hoped that the therapist would be able to explain better than I was what was going on.  The psychiatrist seemed unaffected and said that mood swings were common at this stage.  We discussed how her current ADHD medication didn’t seem to be working well for her anymore and she prescribed a new one to try.  She suggested that we keep an eye on things and follow-up next month.

Things continued this way at therapy for the month of January.  The first week of February we met with the psychiatrist again and again I expressed concern about depression, as well as the therapist’s concern about depression.  She seemed to take things a little more seriously this time, but we still mainly focused on how things were going with the new ADHD medication and general talking points “How’s school?” Fine. “How are your grades?” I don’t know. “Are you hanging out with any friends?” No, I don’t really have any friends.   Those were about the only words muttered by Angelina in our 25 minute visit before she sort of curled up on the end of the sofa and started at the floor.  Any further attempts to engage her were met with stony silence.  At 20 minutes into the appointment, after nearly 3 minutes of no one saying anything the therapist says “We’ll follow-up in a month.  If she’s having more bad days than good we can possibly discuss medication.”  and we scheduled our next appointment and left.

That brings us to the past month. There are still more good days than bad, but there are more of those days where one minute things are fine and the next minute her entire attitude, mood and disposition change and she is sullen and completely withdrawn and refuses to speak or interact. About 3 weeks ago Angelina’s therapist asked me back to talk alone for a few minutes, and I ended up talking to her the entire session time while Angelina sat in the waiting room.  We discussed the possibility of antidepressants and her response was “I’m a therapist.  I don’t automatically jump to medication to try to help people.  But I’ve been seeing Angelina for a year and a half and in the past few months she talks to me less and less and I’m at the point that I don’t know what to do or how to reach her.  I can’t help her if she doesn’t talk to me. It’s obviously your decision, but at this point I think medication might be a good idea.”  About a week after our last visit with the psychiatrist I mentioned to my husband that we had discussed medication for depression.  I was a bit surprised when his response was “No. She’s already on enough medications. I don’t think that’s necessary.  A lot of kids this age deal with depression.  She doesn’t need to be medicated.”  And for the past few weeks we’ve dug up this discussion a few times, always meeting at a stalemate.  We were finally able to reach an agreement yesterday.

Today Angelina saw her psychiatrist and tomorrow she sees her therapist and will start taking an antidepressant.

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Type 1 Diabetes (faux) for a day(s)

We were recently fortunate to get a replacement transmitter for Angelina’s Dexcom system.  The warranty period on the transmitters is six months and we had her first once for just over 8 months (since January) when we decided to swap it out for the new, slimmer version.  The old transmitter had been acting a little weird, but was generally still okay, but since the clock was ticking on the new warranty we decided it was time to swap them out anyway.  That left us with an operable transmitter that’s clock was winding down in the diabetes supply cabinet.   We also recently had a small part of plastic break off of her receiver and lost the usb port cover, which is something that is covered under warranty and scored us a nice new receiver yesterday.  I sent her off to school with the new receiver today and an idea came to me… I’m going to wear her spare devices for the next few days.

So, this morning after she left for school I shot myself with a Dexcom sensor.  I’ve worn a sensor before, shortly after we first got her Dexcom, but it was only for about 36 hours and then she decided that she wanted it back.  Since we temporarily have a full extra system I will be able to wear the Dexcom for at least a full week (I could likely wear it longer, but I do have to send the receiver back to Dexcom since it was a warranty swap to avoid being charged $199).  Since I was hooking up the Dexcom anyway, I decided to also put in a pump site – skin tac, tegaderm and all.  And since we don’t have a spare pump lying around I just taped the tubing to the Dexcom receiver since I have to carry it anyway.  This may seem like still not comparable to what Angelina has to carry with her, but when we are together I generally carry her Dexcom receiver anyway so now I will carry two receivers part of the time, while she carries 1 receiver and a pump part time, and then just the pump while I carry 2 receivers.

It’s not really the same as having Type 1.  Because, yes, I’m attached to bionic parts with tubes and tape, but I don’t have to deal with the ups and downs of blood sugar.  I will still be carb counting, because I do that already for Angelina, but I won’t have to actually bolus myself with insulin since my pancreas still kicks it out pretty well on it’s own.  I will, however, be checking my blood sugar a few times a day since the Dexcom requires at least 1 calibration every 12 hours, but I won’t have to check before every meal or if I wake up in the middle of the night.

Wearing these devices will hopefully give ME a sense of awareness though.  That sense of having things attached to me 24/7 like Angelina does and having to be mindful of that when I change clothes, take a shower, or walk past door knobs to make sure tubing doesn’t get caught and sites yanked out.  I’ve placed both sites on my abdomen because I’m home alone and those were the only places I could reach easily on my own.  I considered wearing the Dexcom on my arm like Angelina does, because it makes it visible.  It makes diabetes visible and it causes her to get a lot of stares and people asking questions – sometimes it’s annoying, but it also starts a conversation about diabetes and every conversation about diabetes raises awareness.  But, alas, I cannot reach the back of my arm on my own to place a sensor.  So, my awareness will have to be here.  In pictures

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Blue November: Diabetes Awareness Month Start Tomorrow

November is upon us.  I am going to be participating in the Project Blue November Instagram Challenge.  See below for the prompts and a URL for the PBN instagram challenge page.

If you’re feeling particularly like following my progress check out Chasing Lows Instagram profile at: http://instagram.com/chasinglows  or see my Instagram widget on the left sidebar further down the Chasing Lows homepage.bluevember

I also still have the “Ask A D-Mom” giveaway up on my page until November 30, please submit your questions or share on Twitter, Facebook, etc. to enter to win!

Mama Said There’ll Be Days Like This

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.

Q&A: Ask a D-Mama

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 chasinglows@gmail.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!

It’s That Time of Year

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’m ready.

 

CGM in the Cloud: We Are Not Waiting

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… IMG_0069

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/