School Issues and 504 Plans

This morning I spent an hour and a half talking to Scott for the Juicebox Podcast which is featured on his blog, Arden’s Day.  Scott and I talked about issues with diabetes accommodations at school, and how to negotiate for some of the things that may seem like common sense to D-parents, but that schools aren’t always so quick to embrace.  I had specific questions about how he managed to convince his daughter’s school to allow him to manage her diabetes from afar via text while she is at school.  Many schools have strict “no cell phone” policies, and our school in particular has been prickly about allowing cell phone use, even for medical care, unless Angelina is in the office being directly supervised by the nurse or health tech.  Of course, my feelings (and I’m sure the feelings of many others) is that this requirement seems to defeat the potential benefit of texting.  My desire to be able to communicate with Angelina through text is to help avoid some of the extremes that would require an adult’s help, such as very high or low blood sugar, and also allow her to remain in the classroom so she is not missing important instruction or classwork because of her diabetes care.  From my perspective, she and I being able to text during the day about her diabetes care is a win-win situation.  She gets more butt-in-seat time in class AND I am able to help her address issues with blood sugar levels as they happen, instead of waiting until the next office check-in time – at which point it could be anywhere from 1 to 3 hours that a rogue blood sugar goes unchecked.

The podcast will be shared in the next couple of weeks on Arden’s Day and I will be sharing a link to it if any of my readers are interested in hearing it at that time.  I also will likely be writing a bit more about school preparations and 504 Plans in the next few weeks as we inch closer to back to school time.  Be sure to check out the “504 Plan” and “Education” tags in the upper left sidebar to see my previous posts on these subjects and the evolution of our relationship with Angelina’s school regarding her diabetes.

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.