When diabetes throws you a curve... just go with it
My son Cole is a baseball player and we talk about different aspects of playing the game with some frequency. He's a good listener and he makes adjustments most times with ease. There is this one pitch that he struggles to hit, it's low and just a bit outside but is almost always called a strike. Cole won't swing at that pitch no matter how many times I assure him that he can reach it. I tell him all the time to, "just go with the it" but he resists.
Perhaps 'just go with it' is something you have to feel and not something another person can describe but I'm still going to try.
Managing your day-to-day stress as it relates to your child's type I diabetes is, if you can find a way to 'feel it', as easy as just going with it...
Arden's BG was pretty perfect Sunday evening when we changed her OmniPod, except for her basal she didn't get any insulin for the remainder of the evening. By midnight her BG had drifted up to around 180 so I delivered a small corrective bolus. An hour later her DexCom began to beep and indicated that her BG had risen above our high limit, which was odd because I definitely expected that the last bolus would bring her to 120 but instead she was more like 220.
Getting the idea that the last bolus wasn't making a dent in her number, I gave a little more and then waited two hours to see where we stood.
Two hours later was about 3 am and her BG had not moved, I knew now that we either had to push a large bolous and everything would be great or change the site and start over. I wanted to bolus big but at that time of morning I couldn't be sure that I'd be in any condition to act if she was suddenly 45 at 5 am so I gave another small correction and set an alarm for 6:30 (an hour and a half before Arden gets up for school).
When the alarm sounded I felt like I had sand in my eyes. I checked her CGM and saw the steadiest line you could imagine, steady but too high. I bolused this time for the full correction plus the 36 carbs that Arden would be eating for breakfast. I then literally thought, "that'll do it" as my head hit the pillow to get my last 45 minutes of broken sleep.
In the morning I got Cole off to school and went back upstairs to wake Arden whose BG I was sure was going to be in range and heading south just in time for breakfast. The rest went just like you think it did. Her BG was a little lower, falling but in no way was she feeling the full effect of that last bolus. The site needed to be moved.
In that instant my entire day changed.
Arden wasn't making the bus and I needed to wait out the last bolous before she could even eat. It was a mess but I didn't let the sudden upheaval of the day rattle me or Arden. I explained how our day changed so Arden wouldn't be flustered, we pulled out some books to read to help take her mind off of her hunger. I moved an appointment, slide a number of to-dos to the next day, emailed the nurse and her teacher and then refocused on my new goal for the day - getting everything back to normal and salvaging as much of Arden's school day as I could.
I realize that being a stay at home parent helps lessen some outside influences. I don't have a boss to report to so I can be flexible but it's not the mechanics of the day that I'm most proud of. I'm proud that when the pitch tailed away from me I didn't complain that it was a ball or that the ump was screwing me. In fact I didn't even wait for someone or something else to tell me what my reality was going to be.
I just went with it, I dictated what happened next.
There is a moment in almost every situation when you make a choice. You can dress it up anyway you like but in the end you decide how you feel and what you'll do next. If you go with it and just except that in this moment you took the best option available to you, well, I don't understand how you can be upset. We may not control the when or why in our lives but we sure can have our say in the how.
When my son learns to let go and swing at that low outside pitch he's going to miss a few, he'll foul off even more but once in a while he is going to drive that shitty pitch so far into right field that it'll make all the swings and misses very worthwhile.
Arden got to school at noon. Her BG was in range, she had breakfast and was ready to learn. We even got to spend some great time together. I did the best I could with the pitch I got.
Continuous Glucose Monitoring Urged in Type 1 Diabetes
By Kristina Fiore, Staff Writer, MedPage Today
Published: October 14, 2011
Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco and Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner
Both pediatric and adult patients with type 1 diabetes should use continuous glucose monitoring (CGM) to measure blood glucose levels, according to new guidelines.
There's high-quality evidence from studies showing that CGM can reduce the risk of hypoglycemia and help maintain good glycated hemoglobin (HbA1c) control in both populations, David Klonoff, MD, of Mills-Peninsula Health Services in San Mateo, Calif., and colleagues reported in a clinical practice guideline from the Endocrine Society. The guideline was published in the October issue of the Journal of Clinical Endocrinology and Metabolism.
"There are still concerns about the high costs of CGM and the accuracy of the various systems available," Klonoff said in a statement. "However, the new guideline shows that CGM can be a beneficial tool to help maintain target levels of glycemia and limit the risk of hypoglycemia."
Standard blood glucose monitoring with finger sticks can provide only intermittent snapshots of glucose levels, the researchers said, and often miss sustained hyperglycemic and hypoglycemic excursions.
On the other hand, CGM allows for more complete blood glucose profiles, though there have been concerns over the accuracy of interstitial tissue sampling compared with actual blood levels. However, newer devices have shown improved accuracy, Klonoff and colleagues reported.
In their review of the literature for creating the guidelines, they found sufficient high-quality evidence to recommend the use of real-time CGM in children and adolescents with type 1 diabetes who are at least 8 years old.
There was also high-quality evidence to recommend CGM in adult type 1 diabetes patients, they wrote.
The guidelines also suggested intermittent use of CGM in both children and adults who can't use real-time CGM, in order to analyze nocturnal hypoglycemia, the "dawn phenomenon," and postprandial hyperglycemia. Intermittent use also can help manage hypoglycemic unawareness, as well as assist patients when significant changes are made to their diabetes regimens.
They noted, however, that this suggestion was made on the basis of low-quality evidence.
The guidelines also recommend against the use of CGM in the intensive care unit or in the operating room "until further studies provide sufficient evidence for its accuracy and safety in those settings."
Arden's 504 plan for download
I pulled ideas from a number of sources when I wrote Arden's 504 plan. I found that there were good and useful ideas in a number of places on the internet but that most templates went (I thought) too far. I felt that they went into a level of detail that would be off-putting to the school district. Over a number of months I culled, wrote and edited a plan until I settled on the one that we use now. It covers Arden in all ways medically, scholastically and personally that I found necessary. Recently I was reminded that I promised to share the plan and never did. So let's take care of that right now.
Below are links to Word and Pages versions of Arden's 504 plan for type I diabetes, all names have been replaced with place holders, you should make changes where and when you see fit. Please know that the process of putting a 504 plan in place can be lengthy, requiring a number of meetings. Just like in any negotiation you will be asked to make concessions and you should ask for them. When in doubt of your rights, refer to the AFT (American Federation of Teacher's) document, 'The Medically Fragile Child', this pdf is full of information that you can and will need while making your way through the process... it's a bit like having the other team's play book and is quite helpful!
Arden's 504 Plan (Kindergarten -2nd) - download for Pages
Arden's 504 Plan (Kindergarten -2nd) - download for Word
The Medically Fragile Child - download PDF
I urge you to seek out the laws and guideline that exist in your state regarding your child's rights and what the state requires of your school. It's my experience that the school will try to get away with taking on as little responsibility as they can get away with. Being educated about what is required of the school makes it much simpler to get them to deliver. Think of it like this... When you are buying a car there is a number that the sales person can't go below, your offer doesn't need to be any more then that number. If you don't ask for the lowest price available, the salesperson isn't going to tell you that you offered too much. Knowing the laws and guideline is knowing the bottom line.
Please email or leave comments with any questions.
I want to add that my blog should in no way be confused for legal or medical advice. These are no more then my experiences and I am sharing them with anyone who is interested in knowing how I put together a 504 plan for my child. Never take my advice without first checking with a professional.
Promise Meeting 2011
I spent an hour this afternoon with a handful of wonderful people. We gathered in our Congressman's office to support the work that the JDRF does. I have to say that I believe these meetings are a significant tool in spreading support for type I diabetes amongst our lawmakers. I found our congressman to be engaged, interested and concerned but there was more to the meeting then just pleasantries, the congressman spoke about close relatives of his that have type I as well as his spouse being effected by other autoimmune disorders. He was very aware of studies, laws and pending bills that all have a great effect on your life and mine.
I left with a very positive feeling but most importantly I believe that he will tell the stories that we told him to others in Washington.
I encourage you to sign up for a Promise meeting in your area, you'll be glad that you did!
Just click on http://jdrfpromise.org and you'll be signed up in no time!
I hope to have a photo from the event soon...
Trusted my instincts
Last night before bed, Arden's BG unexpectedly spiked up. I resisted the urge to play it safe and trusted my instincts to bolus. I covered the high BG and encouraged a small snack that I did not cover. We had an early dinner and while I didn't understand the spike I knew that the insulin without anything in her stomach would likely cause a low later. So I popped some corn and Arden had a few (of her) handfuls with melted butter to get some fat into the mix.
I must have been a bit unsure initially because I posted on FaceBook that I just bolused and didn't know what to expect. Two hours later her BG was in a good place and drifting gently to where she woke this morning, 85.
This morning she woke up in such a pleasant mood and immediately began talking about all sorts of funny stuff. She hopped out of bed when I asked her to, didn't linger in the bathroom or mess around while she ate... she didn't even complain about brushing her teeth! All of that makes me wonder just how much varied and fluctuating blood glucose levels effect her personality, mood and feelings.