99 Luftballoons of Rage

I guess this is more for the diabetes than the doctor, but give me more strips

Why Dr. Doughnut so adamant reduce test strips use 300 from 400? CDE call today this news, “She’s very certain you should be testing less. She’s really putting her foot down” make Bigfoot cry parking lot Seven Stars Bakery after so nice almond milk chai.

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76 responses to “99 Luftballoons of Rage

  1. Bekah

    Your email is perfect. There need not be shame. Big love, Bekah

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  2. Eileen

    I think you are totally justified in asking and your email was fine. Clearly, many times you tested, action had to be taken, whether a correction or food. Liking that tampon analogy.

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  3. Ann

    Deear Dr. D:

    …. (everything Katy said)… In order to cut our usage to 300 strips per month, we will need to cut an average of 5 tests per day. I would appreciate it if you could help me by clearly indicating which of the tests of this typical day we should have eliminated…..

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  4. I was told we check Jenna too often by our pediatrician once. Just like you I couldn\’t wrap my head around how it was possible for us to check less often and ensure her safety. I told him that with all due respect, I am the one who is the parent of a child with diabetes–not him. Frequent testing is the ONLY way to know what is going on inside our children’s bodies. It is the best way to maintain some semblance of good blood sugar control and the most effective means of thwarting long term complications. For a doc to suggest that it is too often is, in my opinion, almost irresponsible. I love your email. I feel your frustration. Be calm but firm would be my only advice. Good luck!

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  5. Great letter. We struggle to keep our Rx of 300/month because Dr. thinks it’s too much. Thinks I’m taking away ‘being a child’ from my child. DUH!! Obvi, the more he tests the more I’m going to let him be a child, even away from me! There are some days that we get away with much less testing than others. Shoot, from bedtime to midnight last night I think we did 7 tests. SEVEN! That’s not typical, but thank God we had strips in the cupboard (btw, the tampon analogy makes perfect sense). We were cut a few months back and I had to take the extras from our emergency containers, from the school box and still had to run to CVS and PAY FOR MORE when my insurance has no problem covering them (when shipped from our regular mail-order pharmacy). I told doctor that our D.A.D. is in training. If she alerts, we test. If we ignore, we’re losing valuable training opportunities. That made her give us our 300/mo back but sheesh! Even if we didn’t have her, what the hell’s the problem?? When people are striving for tighter control than in previous years, it doesn’t make sense to think their testing needs wouldn’t increase.

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  6. Diaun

    Go get em Katy! I think your email was perfect. I’d personally like to know where in that day you shouldn’t have checked, they all seem valid to me. I love the Tampon reference. Why is it so hard to get the supplies our children need to stay alive? What is the harm in having extra’s in the supply closet? Isn’t that better than running out?! Do they think we are going to sell them to somebody????

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  7. “putting her foot down”? Really? I agree with everyone. I esp like the “more freedom”. You are making the disease fit into his life! My daughter has started driving. Am I supposed to tell her that that she has to skip a check before driving or only go one place per day because there are not enough strips? Hells to the no.

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  8. Christine

    Awesome email!!! Our CDE did suggest that we were testing too often once, but it was because we were looking at post-prand numbers too soon (i.e. 45 mins after a meal) and her point was the data was basically invalid. A medically sound point. None of your testing seems too close together, though – and actually reading your daily schedule it was very familiar! Not to mention, if Bubs is doing all those tests without arguing that is awesome!!!

    During school and sports seasons (the entire year, save three weeks in August) we test upwards of 12 times a day. I think our rx is for 12, and balanced out with the occassional day in front of the TV where he hardly tests at all, that seems to work.

    I don’t mean to be out of bounds here, but might I kindly (and respectfully) suggest another endo? From your blog it seems like up until now you have really liked Dr. D, but going into adolescence you might want an endo with whom you really see eye to eye…just my .02.

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    • I guess this is an is an irreconcilable philosophical difference between me and Dr. Doughnut? I called the other endo. He’s not taking new patients. He is a friend of a friend, so maybe the friend will work on him for us. Good luck to me. Basketball season’s coming! Thanks for the kind words.

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  9. Heather

    I am surprised that your endo. would want you to reduce testing! I have had Type1 for 22 years, use a pump and a CGMS and I still test 10 – 15 times a day (the CGM is a great tool, but woefully inaccurate at times). I have never had a dr. refuse to write me a script for as many strips as I wanted. And yes, I might overtest, but I would rather have more information than less, especially because I drive around by myself and with my kids and their friends or am at home alone with my kids all the time. I test before I drive, when I feel tired, before meals, before and after exercise. Testing might take a few moments away from what I am doing, but it enables me to feel confident that I can function normally and take good care of myself and my kids.

    As his parents and caregivers, I think you are smart to test him as often as you see fit.

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  10. Thanks. I feel so furious! I feel so right! It’s hard for me to step out of myself and see how her directions might be in my son’s best interest. I wish I could just show her THIS!

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  11. Joyce Stetson

    So glad you are standing up for your rights. Bubs is very lucky to have you as his Mom. Keep up the good work and give him hell.

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  12. Pam

    You are right. Dr. Doughnut is wrong. The more I think about this the less able I am to see where he could possibly be coming from. We usually avg. 9-10 checks/day but with the new school year & concurrent chaos, it’s way over that right now. Maybe Dr. Doughnut would like to bring his bike over and follow Bubs to school, staying to keep a close eye on him at recess? Or prescribe the test strips. So sorry. This is stupid.

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  13. Nicolep

    A few things… Katy, I’d like to email offline. Though I think Lifespan offers some great care, I have had horrible experience with endocrinology at the Coro. Horrible. I honestly believe that your doc is doing you – and your family – a grave disservice in an outright refusal to prescribe even 50 or 75 more strips – because the doctor is impacting your mental health. I’m sorry, but isn’t it your job to WORRY? You are a parent and caregiver. You SHOULD be worrying. What a frustrating response to a well thought out and justified email. I wonder if you would consider a different endo? I know that probably seems like a rash move, but in my eyes, the mental stress of this on you will directly impact Bubs (I know it did me when my mother was stressing out over disagreements with docs around how I should be testing/cared for)… Ugh. This really upset me today. You shouldn’t have to fight so hard against people who are meant to be helping you.

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    • Thanks. I really want to switch, but need to wait until I’m sure I’m not doing it in anger. Because I do really like this endo. Except for today. Would someone else be better? Is there an endo in Rhode Island or at Joslin who would write the Rx for 450 strips? I want that one.

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      • Nicolep

        I think there is at least an endo in the area who would not be so insistent that you’re wrong and she’s right and never the ‘tween shall meet, you know? What’s frustrating about this is that she wasn’t terribly specific (so she says: 5 tests in three hours excessive (assume she’s referring to 10:30-1:00, but doesn’t tell you which you could have not done – should you have not tested after the low? or not re-tested after the post-low test again – even though it didn’t seem to be coming up that well? how about not testing before lunch – should you have skipped that? Or not before recess? or snack? I would point out directly to the doctor that the time period she sites as excessive were all completely NECESSARY tests…) Does she think you’re testing for entertainment? Urgh……….

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      • That’s the one!

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  14. Nicolep

    There is a PediEndo I’ve heard great things about in East Providence – is that the one not taking new patients?

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  15. Nicolep

    Grrr… My endo recommends him highly – and I LOVE my endo. I think you should really point out that what she says excessive is not at all excessive.

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  16. Autumn

    The only testing that seems excessive is the 10:30am-1pm stretch. I get checking before bolusing. But wouldn’t it be easier to wait a bit longer on the “is it coming up yet tests?” Specifically the 12:50 pm test. If I knew I would be checking again before the lunch bolus, I’d just wait the extra 10 min. I find for myself that 20-25min after eatting a corrective snack is a better indicator than the 10-15 min that’s normally recommended. Also, does his whole class eat a snack at 10:30am? If not, would it be better to move the snack to right before recess? If he checks high then, just send him out to recess without snack. If he’s running low then eat snack. Just a thought to consider. As other posters have mentioned you know your kid best, so don’t take my suggestion unless it works for you.

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    • I think the nurse kept checking because lunch was at 12:45, and she wanted to be able to let him go eat with his friends. The class does eat snack together at 10:30ish, and I think the checking before recess could be cut out, but occasionally he has been low at recess time, so I feel…why cut the pre-recess test out if we don’t have to? If he notices he’s low during recess, he will miss recess—maybe this would happen 1 in 10 recesses. That seems worse to me than testing before recess 10 in 10 times. I know we can cut some out. Thanks for helping me see what’s what! I so just want to be purely right, it is hard for me to see clearly.

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  17. Reyna

    Gosh. I am speechless . Do these doctors actually live with a child with diabetes ? This makes no sense to me.

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  18. But I like those ideas! And I do think we operate more like that at home. But at school, the nurse has less leeway (word?) for winging it.

    His pre-lunch test was @12:35 (school lunch is at 12:45). Since he was low, the nurse was right to re-check in her office before sending him into lunch. And then, since he was still low, and she saw it, she was obligated to follow the treatment plan and give him more sugar and wait, and re-test again, and then send him into lunch with five minutes to eat with his friends.

    If we were at home and he was 59 before lunch and felt OK, I’d probably just let him eat lunch, and tell myself it was probably more like a 65 w/ meter error.

    I can’t believe I’m spending the whole day obsessing over this. I am grateful for every word of this!

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  19. I am sorry, you have every right for your rage.

    I’m emailing you now.

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  20. You are justified, you are not crazy, and I do think the doc needs to either sit with you and discuss which tests are best eliminated or prescribe the additional strips.

    I get 300 a month. It’s more than I need. Most days, I test 1) waking, 2) breakfast, 3) lunch, 4) 3pm, 5) dinner, 6) after dinner, 7) bedtime, and sometimes 8) 2-3am. That’s still less than 10 per day. That being said, you have made your case for your use in several incidences.

    In the meantime as you hash this out with Dr D, I personally would eliminate the post-low checks. While I know lows can hang on, between the CGMS directional arrows, the knowledge you have treated with a reasonable number of carbs, and him no longer feeling symptomatic after the treatment, you should be able to proceed with confidence until his next pre-meal or activity check. I certainly would not eliminate the pre-bicycling alone check.

    I’m sorry that anyone is making you feel like you’re doing it wrong. You want what’s best for him. You have every right to get it.

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    • Thanks! I think when we start using our Dexcom, we will need to test less—those trending up/down arrows sound dreamy. But I found myself saying through my hysterical sobs to the CDE, “I’m just not ready to ask him to wear another thing through his skin, and carry another piece of equipment. Boo hoo hoo hooo hoooooo.” I know I need to get over it and introduce Dex.

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  21. You are absolutely in the right.

    We butted our heads with our endo a bit over this, but thankfully for us she did not choose to pick this battle with us. Her primary concern was night testing, why. We answered because it does not just magically go away when our girl closes her eyes. We now use dexcom and have eliminated some of the pokes because of it, but it is not 100% reliable. Our Rx is 12x per day. Some days we use more, some days we use less. Soccer season we use much more, especially during games.

    An idea, if Dr D does not budge is to get your PCM/Ped to write the script. There’s no rule that it has to be written by an endo.

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  22. Ivy

    Hugs Bigfoot. Sometimes one thing or the other snaps that perfect balance we’ve been having. Even if you don’t use the 15 strips a day, I really don’t see the point of the endo limiting the number of strips if insurance is covering them.

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  23. Jen

    100% with you! I’ve had doctors tell me to test less WHEN I WAS PREGNANT, and I just thought… do you even know what my day is like? They set these ridiculous bs targets for me as a preggo, and then wanted to micro-manage and criticize my way of getting there. One endo told me “no more than 7 times a day”, and “only test if you’re going to do something about the result”. Ummm… I do something about the result EVERY time. If it’s high, I take insulin or exercise. If it’s low, I treat it. If it’s in range, I make a note of what I did to get the good number. It’s not like I sit around thinking “ho hum, what will I do, there’s nothing good on tv, maybe I’ll test my blood sugar again, because it’s so fun and I just love poking myself and bleeding on this strip.”

    On the bright side, hopefully eventually you will be able to test less. But I think they should let that happen naturally, rather than putting pressure on you to limit strips before you feel comfortable. The approach should be more: “I see you’re testing 15 times a day. I think we can safely decrease that. Here’s how. Let’s review in a couple of months, and if you are comfortable, we might considering cutting back the strip prescription a little.”

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  24. Jeff

    Fire the doctor.

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  25. Sara

    My endo writes my prescription for as many tests as I want – without question. Not that you need more ammunition but here are some other things to think about in your situation.

    Your son JUST passed his 1st diaversary – he has a very unpredictable pancreas still. It is probably spitting out insulin every so often for kicks and giggles. You need to test more often to figure out what is going on.

    If you are testing more because your basal rates are not working for you, that is the endo/CDE’s fault not yours. So they are 1)causing the need and then 2) depriving you of the method of fixing that need.

    Bubs is just a kid. He still can’t fully describe/figure out when he is low or high or whatever. I test less than you do, but I have been doing this a while AND my frontal lobe is fully developed. Tell your endo that once Bubs is 25 you are willing to test less.

    Sorry you are having trouble.

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    • I talked to our teen dreamboat babysitter about this. He is also a pt. of Dr. Doughnut. He said something like, “I heard you’re mixing things up with Dr. Doughnut,” then raised his eyebrows diplomatically and smiled.

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  26. Ktc

    Kid with diabetes and attentive parents, yeah this is surely where we should do some petty rationing. Doctors and their egos, so fun to deal with. I just loathe the way he’s infantilizing you.

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  27. g

    This makes me angry for you! Are they expensive or is there a shortage?

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    • they’re very expensive to buy in a store. (“very” is relative–about one dollar per strip.) they may or may not be expensive to make. the brand is the insurance company’s preferred brand. i do not think the doctor has to pay anyone anything to write the Rx. the only person (if a corporation is a person) who might lose out if we have more strips is Blue Cross. but it’s much less costly for us to use test strips than to call an ambulance, and Blue Cross allows 450/month. this is bringing me back into WTF mode, so i’m going to bed.

      thanks for being with me here.

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  28. Grr… I don’t like this idea in the medical community that doctors are the only ones that know anything. I’ve had some really frustrating appointments/conversations with my doctor over my son’s seizures. You are doing everything right, respectfully communicating your needs with the doctor.

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  29. susan

    I think it’s ridiculous of your doctor to cut the number of test strips before you discover together whether or not you can skip some testing. The prescription should only be reduced once fewer strips are being used. Two main reasons for this:

    1. You would never want to convey an anxiety about using too many test strips to Bubs–this would be very bad for his approach to diabetes.
    2. Bubs is learning about paying attention to his health, which means frequent testing. To tell him that you don’t need to test before, say, a bike ride, is tricky. What if the next day when you went to test him, he told you that a certain test was unnecesary?

    I remember one day when my doctor was questioning our strip usage. There were three high tests within about 30 minutes and she was convinced that at least two of them were unnecessary.
    Why did we do the first test? It was a test after swimming and she usually goes low after swimming.
    Why did we do the second test one minute later? Because she was still high after swimming, we thought we had gotten a bad result, so we retested.
    Well, why did we test again just about 25 minutes later? Well, now we had gotten home and it was time to eat and there was a good chance she had finally dropped from the swimming and we weren’t about to do a correction based on a bad number.

    The doctor stopped questioning us there. There is almost always a good reason for a test.

    Good luck with your situation.

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    • Thank you for this–a perfect example! We know they’re going to tank after swimming. Of course we’re not going to give a giant bolus for food right afterwards, blind. I appreciate your understanding. Thanks.

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  30. Nicolep

    I also forgot this, but I have an overload of One Touch Test Strips – probably four extra boxes. If you need them, they’re yours – and I’m local so it’d be easy to get em’ to you. Let me know!

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    • Thanks—I can’t take your strips! We actually still use a one touch at school (and verio iq at home), so I’m getting way ahead of myself w worrying and drama here. we are not in danger of running out of one touch strips for at least a month. when the school runs out of them, I hope to be livin large with a ginormous Rx for VerioIQs.

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      • NicoleP

        Let me know. They are emergency kit spares – and they can be given away! Sending lotsa good thoughts your way.

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  31. mollyjade

    You should ask the endo for specific instructions for the school nurse, since the “excessive” period was under her watch. (Not the nurse’s fault).

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  32. Julia

    IMO this is probably the most important issue regarding your child’s D care, both now and particularly when puberty kicks in age 11 or 12. We get a 3 month supply of strips, 15 daily, with a refill for 3 times. This gives us a 9 month supply of strips. Endo must challenge the insurance company and get a preauthorization. The insurance company will issue you a preauth number; remember it and make sure to have endo write for refills on the script. You will need the refills to cover 9 months to a year; otherwise endo has to do this again every month. Do NOT back down. DEMAND this. You have a growing boy, one who I presume does not sit on the couch all day. BGs must be checked before after and sometimes during exercise. And I’ll bet he’s running around all day. We have been at this from age 8 until now, soon to be 16. Only this year after achieving adult height have I noticed SOME stability with basals. Basals in children can fluctuate every three days. growth hormone comes out at night, and that is not every night; it is erratic. ABSORPTION causes a 25 percent error in insulin calculations… new report just out citing this. These kids usually need to be checked every 3 or 4 hours. Tell your endo, yes, PARTICULARLY at night. Type 1 is “Diabetes mellitus UNCONTROLLABLE.” that’s the dx. Tell your endo to HELP YOU MANAGE this unstable disease. That is her job. If she does not want to take the time to argue with insurance company on your behalf, which many of them don’t, don’t put your child’s life in her hands; don’t put your money in her pocket. Ask around before you switch; find an endo who will support you with… cgms, if you wish; adequate strips 12 to 15 a day is great; what we have always used. This BS has got to stop! And BS is not referring to blood sugar! Good luck.

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    • it’s not even an issue for the insurance company! this is all from the endo, thinking we are overly worried parents, pricking our child’s fingers as soon as we stop biting our fingernails and wetting our pants in fear.

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  34. Katie

    While I applaud your calm approach to the situation and your willingness to fight for what’s best for your child, I have to say that I think 15 tests a day sounds absolutely excessive. Both my mother and I have had Type 1 from a young age–I’m not sure we use 15 strips a day between the two of us! I want to say on average I test 6 times a day, maybe a few extra if I feel “out of whack”. What surprises me even more is that so many other people in the comments agree that 15 tests a day is normal. Did I miss a diabetes memo about testing until your fingertips fall off? Maybe it’s because you’re relatively new to diabetes? Is this what doctors are prescribing now? (though apparently not–hence, your complaint) I totally agree that you need to feel comfortable with whatever is prescribed and keep your son in control, but I also agree with the endo that it seems a bit out of hand. I hope this comment doesn’t come across as offensive, I’m just relatively in shock that everyone sees this as normal and I’m not sure how else to say that. Everyone’s diabetes is different I guess–I’ve just never come across something like this.

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    • It’s not offensive at all! I am glad to hear this–I don’t want to test so much, I just don’t know another way. We’ve been doing: before eating, before exercising, before bed, middle of the night when adjusting basals, plus whenever he feels low, plus re-checking after a low. I am hopeful that we will settle into a steadier pattern soon.

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    • Before we started using Dexcom, our testing day looked like this.

      Wake up/Breakfast
      Morning Snack
      Afterschool before get on bus
      At home/afternoon snack
      Soccer practice (beginning/middle/end) *not every day
      Before bed
      Middle of night check x2

      This is 12x per day easy and doesn’t include follow ups for lows or on days there’s no soccer and it’s a lovely day add in play outside time. It would be easy if routine was exactly the same every day, but if you have an active child sometimes there are more pokes in order to let them be a child. It’s an ugly compromise.

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