We have a vial of ketone strips that we will test in a sample of urine from Bets should she wake up ill or when she has a super high number, or sustained high blood sugars we can not get down even with pump adjustments and extra bolusing. On the side of the vial is this "color meter" telling you how "small or large" the ketones detected are. You match up the color the strip you dip comes up with to the colors on the bottle. Easy enough. All Betsey's siblings like it when we have to test for ketones because it's "fun" to see what color hers will come out as. Of course, it's only really "fun" if it comes up "no trace!"So as it turns out, we realized one day at a clinic appointment, her A1C was unusually high even though the chart I keep of her numbers depicted a much lower result.
Even with those crazy high blood sugars at night.
Well, turns out, our Freestyle meter was not working properly! The nurse gave us a new meter in the office that visit, made by One Touch Ultra to use. We tested her sugar right there in the office after using her Freestyle just to compare results. The Freestyle gave us a decent reading, less than 130 mg/dl if I remember correctly. Then, within 3 minutes, we used the new meter--- 300-something!!! Basically, for about 2+ months, we had been getting inaccurate readings from the Freestyle and poor Betsey had been running so high for so long, and I had no idea! She must have felt so lousy.... but just gotten used to it. I only knew she was high on the days she'd wake up and be sick as anything. And what baffled me, was that often times, she was high, but her meter didn't read it. But she had large ketones. Didn't make sense.
So, I started to seriously consider applying for the CGMS (Continuous Glucose Monitoring System) for Betsey. This is an apparatus that is so beneficial to diabetics, and I have that much more peace when I kiss Betsey good night.
I think if children are willing to deal with another poke in their little selves, another piece of equipment attached to them, it is the best thing for them and controlling their sugars.
Our insurance was not going to cover it, however.
The initial response was a flat "No." I expected it. Yale prepped me for it. But it didn't make it easier.
In my free time, I drew up a letter to send to them imploring them to cover this for our girl. We got a record "Yes!" response (sent the letter on a Monday I believe and heard that Thursday!) and it took a matter of a month or so working with Medtronic to get the slice of gold in our hands! Now, getting it to calibrate properly and getting it to work with us--that's a whole 'nother story. It was terribly frustrating for about 6-8 weeks, but we held on, and now, I don't know what we'd do without it.
Here is the letter I wrote to our insurance company:
To Whom It May Concern;
I am writing you in regard to a denial we recently received pertaining to a request for a Continuous Glucose Monitoring System, specifically, the Paradigm by Medtronic, for my daughter, Betsey Gometz.
Betsey was diagnosed with Type 1 Diabetes on March 13, 2005. She was an innocent 7 years old. I can not begin to tell you, in short, how much of a life change this has been to our family of 8, not to mention, the emotional heartbreak it has caused us as her parents and her 5 siblings, 4 of them younger than her.
In addition to our very busy life raising a large family of children, we manage to constantly be aware of Betsey’s diabetes and make it priority #1 every day, all day. We test her blood for glucose levels, on average, 10 times a day. Many times, it is more than that. She calls me from school during the day and we are constantly going over her numbers, her boluses through her insulin pump and figuring out how to achieve that near perfect blood glucose control, considering the circumstances - nothing is as good as a real pancreas.
Diabetes does not go to sleep; this is a 24/7 job. About a year ago, when I was up in the middle of the night to test Betsey, she said to me in her sleep, “200? Correct that...” I hadn’t said a word to her. It was in the still of the night, total silence. It saddened me to realize that she never gets a break from this disease. She even dreams it - a time when her eyes are closed and her dreams should be about playing outside, bike riding, friends, candy…. She is dreaming of blood sugar numbers and boluses.
Despite our best efforts, Betsey’s HbA1c (a blood sample taken that gives us a glimpse as to her overall control in the last 8-12 weeks) has continued to rise over the last 9 months. Currently, at her last Clinic visit with Yale, she was 8.8%. Ideally, a diabetic strives for less than 7% for optimum health as they grow and become adults. At the rate we are going, Betsey’s health will deteriorate and ultimately may result in a shorter life than she is entitled. You cannot begin to understand how that makes me feel as her mother, nor can you understand how much it makes me ache for her every day with what she is going through at the tender age of 10. What a responsibility to have at her age.
Betsey’s father and I are now taking turns getting up at night to test her every 2 hours through the night since her last visit with Yale and her elevated A1c level. We usually would test her a few times a week at night just to get an idea of where she was, really being more afraid of a ‘lo’ than a ‘high.’ We set our two alarms and we take turns getting up, testing her, adjusting her pump as needed. We will wake her if she is ‘lo’ (below 70 mg/dl) and not waking on her own, or give her insulin in the form of a bolus through her pump if she is ‘high’ (above 180 mg/dl. ) We do not mind doing this on a nightly basis if it is what it takes to keep our daughter well and in good health. If there is, however, a better method available, we are ready for it! And there is: The Continuous Glucose Monitoring System we are applying for.
Lately, we have been having an issue with Betsey waking up in the morning sick. She will literally crawl out of bed, moan to us from her bed, or send her sister with whom she shares a room in to get us, telling us she does not feel well. Immediately, we will test her and she is usually above 300.
Then the ritual begins.
I race downstairs to get a new tubing and a new infusion set (two parts of the pump that are the needle into her bum, and the tubing that delivers the insulin) because maybe there is a blockage. I have to make her get out of bed despite her visibly sick self that is willing to throw up right there in her own bed, and urge her to get some urine in a cup in the bathroom. I have to test her urine for ketones, which, inevitably, are present and are ‘large.’ (The ‘larger’ the ketones means the more sick she will feel, and the more dangerous for DKA - Diabetic Ketoacidosis; a potentially fatal condition for a diabetic.) This is causing the nausea from a continued high level of blood glucose overnight or in the early morning hours.
Typically when this happens, Betsey gets to the bathroom, crying, sobbing, on the floor, holding her tummy, begging me and pleading me to help her not throw up. She asks me to stand there. Just be there. Just wait with her. Put a ponytail in. We breathe. We talk to get her mind off of it. Or I talk, she listens. I get the facecloth ready to wipe her mouth. It‘s a waiting game. I give her a large dose of insulin to bring her blood sugar down, but it takes time to take effect. Every time, she ends up throwing up - violently. If we are lucky, Betsey only throws up a handful of times and then she feels better to leave the bathroom. We retreat to a comfy chair, and resort to testing blood sugars every half an hour until the numbers start to go down with appropriate boluses through the pump (sometimes even a shot.) We test for ketones and try to flush them out. If we are lucky, she feels good and is 100% by 10:00-11:00 a.m. and I can get her off to school. We have had to make several runs to the ER for IV fluids and help with getting her better because despite our best efforts, diabetes can be very hard to control.
Another issue we are facing is Betsey’s response, or lack there of, to low blood sugars. Often by the time she tests and feels ’lo,’ she is less than40 mg/dl and many times we get the ’LO’ reading on her meter which is less than 20 mg/dl. Luckily, we have not had an experiences with seizures or passing out because of the extreme low‘s. However, I am very concerned as time passes and this becomes routine about a condition called hypoglycemia unawareness, a condition that results in loss of feeling a low blood sugar and can be potentially deadly as the diabetic lapses into a coma and the low blood sugar goes untreated. A very common problem.
Betsey will also be reaching puberty soon, which will bring with it a completely new level of blood sugar ups and downs, one we anticipate but are not looking forward to.
I am asking you to provide coverage for the Continuous Glucose Monitoring System for our Betsey at this time. Now, more than ever, we need this. It will alert her to an elevating high blood sugar so she can treat it accordingly, and likewise, alert her to a dropping blood sugar so she can treat accordingly. She will be alerted in the early morning if her blood sugar is rising and she will be able to bolus insulin prior to getting and staying high to alleviate many of the mornings waking with ketones and being sick. When Betsey plays sports, this device will play a key role in making her feel more confident as a team player. It will give us, her parents, and her doctors a better idea through graphing and hourly data as to how to adjust her pump and insulin needs for even tighter control. In the long run, supplying Betsey will this available equipment will cost you less that the hospital visits we inevitably will have to make in the years to come, along with the health issues that may arise from poor glucose control, despite rigorous management.
This monitoring system will help Betsey have better glucose control. It will help lower her A1c’s, which in turn will provide her the opportunity to lead a longer, healthier life, just as she should. As I look into Betsey’s translucent blue eyes, I see right into her soul. Her sweet ten-year-old soul is begging for a cure for Diabetes. It destroys a piece of me to know that I cannot give her that. What I hope to be able to give her is the technology that is available today to help her better control her disease. I know if you were in the same situation, you would expect nothing less for your child.Thank you.
Sincerely,
David & Meghan Gometz
•A final note -- thank you to Connecticare for covering this major 'must have' for our girl! I am very grateful because the monthly expense to have this CGM is not affordable.
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