I Can’t Even…

I don’t even know what to say here.  I just know that I haven’t posted anything in three weeks and I feel like I need to write something here, even if I can’t write about the real reason I haven’t posted anything in 3 weeks.

I’m going to say that the sh*t hit the fan recently and we are all still trying to recover and mop up the insane mess that our life has become.  Diabetes isn’t the biggest monster under the bed.  And that’s all that I can really say.

I hope everyone is well and enjoying summer break (if it’s started yet).

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  She had become more withdrawn in her therapy sessions and about every third session she wouldn’t speak at all, but sit and sulk.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.

Correct and Move On. (or what happens when it feels like you can’t)

Ugh. It’s me again. Venting. Again. I’m so tired (literally and figuratively) of crazy blood sugars! Last week Angelina started experiencing incredibly stubborn blood sugars between 11p-3a ish. I thought I knew the culprit so I just treated the lows and tried reduced temp basal rates. Then Monday she got sick and was running higher levels all day long. The outside culprit that I had blamed for the nighttime lows was no longer present so I was confused after a day spent battling numbers in the 300’s, that at night she was still dipping down drastically between 11p-3a and needing low treatment and reduced temp basals. But, come 3a the illness/stress hormones seemed to kick back in and if I didn’t start her back on increased temp basal for that she would wake up very high in the morning. So, needless to say I haven’t been sleeping very well lately. We did have 1 night where I didn’t have to reduce her basal and she ended up perfectly in range and I thought “Yay! The lows are over!” Then last night it happened again and BAD. Reduced basal drastically, especially considering how much extra basal she’s still getting during the day, plus gave multiple low treatments which seemed to move her barely at all.

So, tonight when she was low at bedtime (earlier than usual) I went ahead and reduced her basal rates for a few hours hoping that it would prevent those lows we’ve been seeing a little later on. She also had a single juice box at 10pm for a 63 bg. The juice only brought her up about 25 pts after 30 minutes, which is not as much as I’d like, but I figured I would wait and see what reduced basal would do. Well… here I am, 1:40am and her BG is 218!!! I stopped reduced temp basal around midnight when she hit 165 thinking that the “normal” downward spiral we see about that time would level her off or possible drop her slightly. Nope. Still going up. I have no idea what is happening. I am tired of this. I HATE DIABETES RIGHT NOW!

And saying that, if it’s not clear, you can envision the scene in the Jim Carrey version of The Grinch where he is going through the phone book saying “Hate, hate, hate, LOATHEEE ENTIRELY…” that is me right now, and diabetes is every entry in the phone book! I am normally a pretty positive person when it comes to diabetes care and a wise D-Mom told me early on “Correct and move on” and I try to live by that as much as I can. Because if you don’t just correct what’s happening right then, and move on, diabetes will take over your life in a bad way. But maybe it’s because it’s late and I’m tired, but know that I still have work to do before I can rest, and even then I will still probably be up in 2 hours doing more diabetes work. Maybe I am just feeling sorry for myself right now. Whatever the reason, I know these feelings will pass. I know that soon, maybe not tomorrow, or the next day, but soon, things will go back to “normal” and diabetes will return to being the passenger in the back seat, rather than the driver of our lives, but tonight is not that night. And tonight I am angry and sad and feeling burnt out. For myself and for Angelina.  I’m angry for the times like this past week, where diabetes has seemingly taken over everything.  I’m beyond tired. I’m exhausted, mentally and physically.  I didn’t really realize it until just now.

I just wish, more than anything, that this monster would leave my child’s body and we could be free of it, even for a day.  Even an hour.  Because even on her best days, it’s still there, lurking in the shadows, waiting for one small misstep.  An incorrectly counted meal or snack.  An incorrectly calculated dose of insulin.  A spontaneous stop at the park for half an hour.  All of it, any of it, can cause our carefully balanced house of cards to come tumbling down.  We must always plan for the unplanned.  Expect the unexpected.  Constantly be on our toes and monitoring blood sugar levels.  Making sure that I’m never without a quick source of glucose at any given time, for any given activity, even a quick trip to the grocery store.  Especially for a quick trip to the grocery store.

Constantly trying to remember what day it is today and what day it was when we last changed her infusion set or her sensor.  Or at least trying to remember to set the reminder that will remind me when it’s time to change these things.  This afternoon she asked for a glass of milk.  As she was bolusing she said “Oh, I have a low reservoir”.  There were 0.75 units of insulin left in her pump. And I sat there thinking hard, trying to remember what day it was and when we last changed her site.  Fortunately it was Monday, she just went through her insulin faster than usual because of being sick and needing extra insulin all around.

Two hours now since I increased her basal insulin.  Blood sugar has not gone down, but continues to steadily climb upward.   235 currently.  I guess that means that the lows aren’t coming tonight.  Time to correct and move on. To sleep.

Endo Day

Today was Angelina’s quarterly endo appointment.  I don’t know why but I always feel over-prepared for her visits.  It’s almost as if I’m expecting her endo to suddenly tell us we’re doing everything wrong and change everything.  However, every visit I am reminded why we love her.  Because she doesn’t.

We were at the office for about an hour.  In that time the nurse checked Ang’s blood sugar (238 -high from waffles), her a1c (6.7!!!) and took her pump and meter to download.  We did wait a little while for the endo to come in, but she always gives us her full attention and never makes us feel rushed.  She always has complimentary things to say and this is the second visit in a row where she pretty much said that we’re doing great and things look great and she doesn’t change a thing.  We discussed morning breakfast spike and how I feel that is probably why Angelina’s a1c went up slightly from her last visit in August when it was a 6.5 (lowest ever!).

Because now that she’s back in school and morning’s can be hectic we don’t always get the chance to pre-bolus.  And breakfast is pretty much convenience foods that are quick and she can eat on her walk to school, which coincidentally are some of the foods that seem to cause the biggest spikes.  Her endo asked if I thought we should look at her breakfast ratio and I said that I had played with it a bit, but then we dealt with lows instead and that it was usually high on mornings when I know we didn’t do all we could to prevent that spike.  She turned to me and said “You’re the expert.”

Maybe I’m being narcissistic, but I always love it when the endo tells me I’m the expert.  Because, well, I am.  I’m not a diabetes expert.  I don’t have a medical degree and I probably can’t do or know even half of the endocrinology related things that her endo does, but I am an expert in MY kid and MY kid’s diabetes.  The fact that her endo not only recognizes, but also verbalizes that, makes me feel awesome.  And because she trusts my judgment, it makes me trust my judgment, and that means that I am more proactive in caring for Angelina’s diabetes and making changes when needed, instead of sitting around wringing my hands wondering what I should do. Or worse- waiting by the phone for the doctor to call to tell me what to do.  Don’t get me wrong – there’s nothing wrong with either of those options and if your dr hasn’t given you the instruction or guidance needed to make those types of decisions on your own or you don’t feel comfortable making them, then it’s better and safer not to.  There is no right or wrong way.  But I have never been one to sit around and wait for someone else to tell me how to handle things that I am capable and willing to handle on my own with occasional guidance.

These appointments provide me with that guidance.  They provide me with that feedback that it’s okay to do things my way, and the way I am doing things is having a positive outcome.  And knowing that if I don’t know or I’m not comfortable that the endo is there to help, but ultimately this is Angelina’s disease (and mine since I’m handling daily management) and not the doctor’s.

Afterwards Angelina wanted Taco Bell and consumed 146 carbs at 3:45 in the afternoon for a “snack”.

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!

What has been going on lately?

I never finished my post after Angelina’s cold.  The end of that long, convoluted story (when aren’t my stories long and convoluted?) was that we got her on the medtronic CGM (continuous glucose monitor) starting November 5th.  Insertion was easy, and after the first 24 hours on it a lot of the readings were pretty close to her meter readings.  Of course, the CGM reads interstitial fluid and not blood so it’s considered accurate if it’s within a 20% margin.  Then, we hit day 5 of a sensor that should last 6 days and our entire CGM experience went to Hell in a handbasket.  We set minimal alarms at training so that it wouldn’t be alarming all the time, which can be pretty frustrating when you’re getting used to a new device.  Well, at the start of Day 5 (and by start, I mean 5am) we were getting alarms left and right.  It alarmed that her blood sugar was over 300.  Then it said her blood sugar was going low, then again that it was over 300.  Obviously, her blood sugar wasn’t’ fluctuating that much that quickly (this was all within about an hour) so I tried to restart the sensor as I had seen mentioned in one of the T1 groups that I frequent.  That stopped the alarms momentarily but within a couple of hours it was freaking out again so we decided to remove the sensor and start a new one somewhere else later that day.  

The second sensor was okay.  It never really was as accurate as the first one at any point really.  And we had chosen to insert it on Ang’s backside and it was a bit of a bleeder.  We also found that she laid on it at night while sleeping which caused it to alarm, over and over, every single night.  It also decided to go haywire on Day 5.  We took a day off after that and let her go CGM free.  I have to tell you that those 24-ish hours were torture for me!  In ten short days I had gotten used to looking at it and at least getting some sort of a semblance of an idea of what direction her blood sugar was heading in when we did blood sugar checks.  I never really trusted the thing to give me an accurate number, but at least it was okay at showing me whether she was headed up, down, or holding steady.  

We finally put the third sensor in on her thigh.  She wasn’t happy about that one, but I said “Hey! Let’s try it.”  About 2 hours after the sensor was up and running (so maybe 4 hours from insertion) she caught it on the arm of the recliner and ripped it out.  Quite painfully, I might add.  Again, she refused to put a new one in right away and said she was done and no longer wanted to wear ANY CGM.

So, I dug in deep to some of my groups and reached out to the DOC for help.  One of the moms who I had talked to said her daughter had been using the previous medtronic CGM since 2009 and they had great success with the sensor on the arms.  It was more accurate for them there, it wouldn’t get laid on at night and cause erratic readings and alarms.  It wasn’t likely to snag on the furniture as she walked past.  So… I bribed Angelina to give it another try.

From the word “Go!” the arm sensor was by far the best one yet.  It didn’t give false alarms at night, it wasn’t really in the way.  The biggest annoyance was that Angelina’s pump was the receiver and I kept asking to look at it, which bugged her a bit because it meant I was in her personal space more.  Since we kept having problems on Day 5 I thought maybe it was the transmitter so on the evening of Day 4 I popped the transmitter off and re-charged it.  It was day 7 before we started seeing erratic numbers and alarms and decided to remove that one.

Well, since we had such great success we decided to try the other arm.  For whatever reason, the other arm was the worst sensor yet, aside from the sensor that ripped out on the furniture.  It started out reading over 100 pts different from her meter, and the closest we ever saw it was about 40 pts away from her meter reading.  And then, on the morning of Day 3 I woke up around 5am and went in to check Angelina and the alarm had been going off for an hour that she had a low blood sugar below 40.  Anything below 70 is considered low, and below 40 is really low.  Angelina didn’t wake up to the alarm and I didn’t even hear it until I went into her room and pulled her blanket back to look at her pump.  I did a quick blood sugar check and she was at 95, which is slightly below her target range of 100-150, but still definitely not low and not a concern at that time of the day.  So, I turned off the alarm and attempted to calibrate the CGM to show it that her blood sugar was fine.  

However, even after restarting the sensor it continued to alarm low for over four hours.  I would turn it off and every 20 minutes (the repeat setting we had set at training) it would alarm low again, even though blood sugar ranged anywhere from 95-145.  Finally, we stopped and removed the sensor and I called medtronic to tell them we wanted to return it.  Angelina was to the point that she no longer wanted to wear it.  It had been alarming at school for no good reason because it was inaccurate or had an erroneous reading that wouldn’t be corrected.  She was just done. And so was I.  

So, we sent it back.  The first few days without it were peaceful, but still a little nerve wracking and I still wanted to occasionally ask her if I could look at her trend graph.  I would catch myself and it would be a little upsetting to realize that there was no trend line (not even an inaccurate one) to look at.  So, we decided we definitely liked having a CGM and decided that we would try to order a Dexcom CGM, which is supposed to be more accurate.  It also has a separate receiver which means I can have possession of it and watch her trend line whenever we’re together without having to disturb her.  And, she can wear it in a pouch like she does her pump, so hopefully it won’t get lost when I’m not around.

Somebody had a birthday!

Angelina is 10 years old as of 8:43pm EST Aug 22, 2013.

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Here’s how the day went:

Went to the school at lunch time only to find out there will actually be two aides who will be taking turns helping Ang in the clinic. Normally, the more the merrier, but with Ang and her specific case I do not like not having just ONE person who is in charge of things at the school. I think having 2 people will likely lead to some confusion, and possibly a delay in treatment if they have to scramble to figure out who to call to come to her in an emergency since neither of the aides full time job is in the clinic. They are both aides helping other disabled or special needs kids in their classrooms and are pulled out if/when Ang comes to the office. I’m very frustrated about this situation because IF there is an emergency with her every second counts and precious minutes could be wasted while office staff try to figure out who to call and the amount of time it takes for that person to respond and get there. Both aides are in classrooms literally across the school from where Angelina’s classroom is, and the office is halfway between both.

I was able to get the living room and kitchen cleaned in the afternoon after picking up her cake (which was beautifully done and she loved it!). David got home around 4:30, so only 30 minutes later than planned, but he bought her a rose bouquet on his way home so I think that makes up for it. She decided she wanted to order pizza in for dinner and we ate around 5:45pm. Pizza is a particularly hard food to dose insulin for because of the very high fat content it has a nasty habit of being slow to digest which means that it usually really effects blood sugars a while after her insulin has already done it’s job. She decided to only eat 1 piece though so that definitely helped. 

She loved her presents, most of them she already knew about or helped pick out, so I did have a couple surprises in there, including the movie “Epic” which I picked up when I got her cake. She got Minecraft (game) on her phone and got pretty absorbed in that most of the night. I asked her what she wanted to do and did we want to do some family time but she was content playing her game so we just all had a low key kind of night. After cupcakes we put on her new movie and when it was over it was time for bed. There was no fighting/bickering. The only thing that even stands out is she insisted on lighting the candles on her cake and kept holding the match/candle downward and burning her finger and getting wax everywhere so David started to help by lighting candles on the other side and she had a mini-fit about it but recovered quickly and was happy again. 

Now for the technical stuff about how things went with her diabetes:
I checked her blood sugar shortly after David got home and she was around 250, her target range being 100-150, so we did a correction to get her closer to target before we even ordered the pizza. By the time we got the pizza and went to eat she was around 175, which is not a bad starting point. At 2 hours post-pizza she was 213 and we went ahead and did cupcakes. She got insulin for 1 cupcake and then a separate dose with her 2nd cupcake and a glass of milk. The second dose we did as a “dual wave” which means she got a small amount up front (since she already had some insulin going to cover the first cupcake and what was left of the pizza) and the rest of her dose slowly over 3 hours to help combat the likely spike from fat content. That was around 8:00. I checked her at 11:30 again, 30 minutes after the insulin dose was done and she was 201 with a small amount of insulin that was still working. This morning she woke up at 162, which is pretty close to her target range and is a perfectly acceptable number to me.

Here is how a type 1 diabetic celebrates their birthday: The same as anyone else – with CAKE!!!   And a side of glucose meter and insulin.

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She Can’t Eat That…She Has Diabetes!

Ever heard this said about your child?  I have.  Usually it’s coming from someone who is stuffing themself with the same item my daughter may be enjoying at the time.  Things like chips, ice cream, cake, pie, candy.  But the fact of the matter is, she CAN eat it.  The difference is that whatever she eats, she has to get insulin from an outside source to use the food for fuel, unlike someone without diabetes whose body does all that fancy calculating and insulin administration all on it’s own.

Of course, for someone with a functioning pancreas the process is much more precise and streamlined.  They probably have no clue what’s going on inside their own body.  I read somewhere recently that a normally functioning pancreas starts releasing insulin as soon as you see or smell food in anticipation of you eating food.  And there’s a built in safety mechanism if insulin is released, but then you don’t eat so your blood sugar starts going low – your pancreas releases glucagon to signal your liver to release some extra glucose into your blood stream to counteract the insulin.

For someone with type 1 diabetes their insulin comes from a syringe, insulin pen, or insulin pump.  As a parent, I will never be as efficient or as exact at dosing Angelina’s insulin as her own pancreas was.  I can give her insulin, but it won’t always be at the right time, or the right dose, and even rarely both.  But I can give it to her and I can try my hardest to mimic a functioning pancreas.  So, if she wants ice cream, she can have it, just like anyone else.  It just means that it comes with a dose of insulin from outside her body.  You telling me that my child can’t eat something while I am trying to figure out how much insulin to give her just makes my job harder.  Maybe I should start telling your pancreas YOU can’t eat that.

For more information please see points 5, 7 and 12 on the post linked below.

 

EDIT:  So, I was reading over at Death of a Pancreas and noticed that the author is the person who made this gem:     Since a very special line from this video was repeated multiple times in our home after watching this video and was part of the inspiration for this post I thought it only proper to share it here.  The line?  “There are only two things my daughter cannot eat.  Poison.  And cookies…   Made with poison.”  Fitting.