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My 7 year old: Diagnosed Today

Discussion in 'Introductions' started by MichelleW, Dec 2, 2016.

  1. rgcainmd

    rgcainmd Approved members

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    Be sure to ask around to get an idea of what a reasonably healthy, and more important, achievable BG range for a child similar in age and time after diagnosis to your son is.

    After my daughter's diagnosis, I had a mistaken idea that if I only tried hard enough, I could keep my daughter's BG between 70 and 130 most of the time. While this may be possible during the honeymoon, after the honeymoon (and without a closed loop system) not so much. Having realistic expectations is important.
     
  2. MichelleW

    MichelleW Approved members

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    Our endo team says an A1C of 7.5 or below is what we should shoot for and that trying to go much lower will increase the risk of hypo events with nominal long term results. That would be an avg of 168. My sons A1C was 14 (off the conversion charts I have ) last week at diagnosis for perspective and in the last 7 days the avg is 225. So... I'm a mixed bag on this. Right now I just want him better in the short term and safe but for long term health I'm wondering if a healthful disciplined diet and exercise regimen will offset the risks of a 7'ish A1C. Ive seen some papers that indicate tighter control than what our Endos are recommending is what's needed for long term health. I have so much more to learn and the hypos scare me. Do their recommendations sound right?

    You wrote earlier that the CGM/Dex would be the one thing you'd pick if you had to choose and I'm with you on that. I just want to know whats going on so that we can be alerted to downward trends and keep him safe. At this point it's really just the fear of unhandled hypos that I can't deal with. I love this kid.
     
  3. sszyszkiewicz

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    Dont worry too much about the A1C at diagnosis. Thats water under the bridge. I think that you will likely find it pretty easy to reach 7.5, and likely better, with a dex.

    You will have amazing visibility into "the number" with a Dex. You can set alarms for when he goes below a number. You can set another alarm for when he goes above a number. It allows you to keep your child in a decent range without guessing and wondering. If he goes outside of your range you can take action, whether it be some snack or a little extra insulin minimizing the amount of time in what I call "excursions".Here is a chart from my sons Dexcom from last week. So you see he had an excursion below 70 at around 3AM, but it didn't last long and wasn't that much below 70 (I have the alarm set for 80). You can also see he was over 180 after lunch, but not much over 180 as we kept an eye on it. Highs also take longer to fix. Later in the day you see the results of a bad guess at a carb count for butter pecan ice cream. :) C'est la vie.

    Also, fyi there are formulas to convert between average glucose and A1C.

    http://professional.diabetes.org/diapro/glucose_calc

    An A1C of 7.5 is an average of about 169 mg/dl.
    An A1c of 6 is an aaverage of about 130 mg/dl

    the bionic pancreas team is averaging about 143 mg/dl which is an A1C of about 6.6

    (for those of you wondering....no I didnt tame the breakfast spike....he had off from school on Thursday and slept in....so we know the basals are looking good through noon ! )

    AgivenDay.png
     
    Last edited: Dec 11, 2016
  4. MichelleW

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    I have so much to learn still.

    Yesterday my son ranged from 67 to 243. It was just a bad management day overall. I messed up the morning bolus - for the first time some insulin leaked out after the injection - to which I reacted by cutting the breakfast carbs in half. That set us up for failure all day. Then for an afternoon snack I was an indulgent idiot and let him have a single 11g Oreo which shot his blood sugars up. Finally he played with his friend during his sleepover here with intensity - the two boys were running nonstop, wrestling, battling, being boys to the point of being sweaty. Late in the evening he had his first reported low, telling me he was tired and dizzy at which time he measured in at 67 (about an hour after his dinner bolus which I added a correction factor for since he was running high from the Oreo). I gave him a juice. The boys stayed up late. I don't want him to go to sleep below a 145 because I've seen him drop 70 points overnight - so I gave him a half wholewheat peanut butter sandwich before bed. He woke up safe at 134 this morning. Overall it just felt messy yesterday and uncontrolled with a total of 10 finger pricks for the kid. He had a great time w/ his friend but yesterday would be unsustainable management.

    Today everything is smooth and controlled. His tutor came over and added in some math related to Diabetes. He's learning and seems ok with the new order of things. When we do things right, it seems like the numbers are steady but there's little tolerance for sloppiness. It feels like there is an intuitive art to this beyond the numbers.
     
  5. sszyszkiewicz

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    You will indeed develop that intuition. You are literally learning how your kid reacts to food and burns energy. Every day you will soak up input, remembering what you did, and seeing the results. You will store it all away in your mind for the next time.
     
  6. MichelleW

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    He's sleeping peacefully. I looked in earlier, pulled the covers up around him, and he took a deep breath as he rolled over to his side. I stepped on a lego in the dark and muffled my painful yelp. Walking down the hallway I thought to myself, 'the snack before bed was enough.' The CGM Dexcom G5 can not get here soon enough.

    He's drifted low in day-hours 3 times since Friday, enough that he felt lightheaded and tingling in his legs. School has been a challenge. The activity and emotion have changed his dosing requirements. On Tuesday we increased his morning bolus and decreased his lunch bolus. His numbers were so much steadier. He didn't go too high late in the morning nor did he go too low in the afternoon.

    It was a good day yesterday until I decided on a rare treat since we were going to get home later than normal: pizza for dinner. I read the nutritional information online and dosed him for the massive 3 slice carb hit of 81g. A couple hours later as bedtime neared I checked his blood. It was 121 - too low to go to bed. Our rule is no bedtime until he's over 140 so I gave him 15g of peanutbutter wheat thin crackers. Twenty minutes later with him nodding off I checked his blood and it was 187. I don't know if it was the late slow to digest pizza or the 15g wheat crackers. I'm anxious to see his morning numbers in the next hour. This would be so much easier with that Dexcom monitor.

    I've also searched for clinical trials. I'd heard there were some which might save his remaining beta cells. I couldn't find any anywhere recruiting for newly diagnosed children his age.

    We still haven't found a local group where he can meet other kids. I'm hoping to hear back from the JDRF soon to get connected there. And with that it's time to check his blood.
     
  7. rgcainmd

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    Pizza requires a fancy extended bolus, and even then it causes highs worthy of rage-bolusing. But I'm not going to restrict what my daughter eats. Don't want to deal with an eating disorder on top of D. Quite frankly, I was overjoyed when the honeymoon ended. Things became easier without random dumps of endogenous insulin.
     
  8. sszyszkiewicz

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    MichelleW....just looking at the snippets above.....you are going to do fine. You got this.

    Pizza, and basically any high carb high fat meal, is always tricky. Lots of different metabolic things at work. My understanding is this: if you dose all at once there is a chance you will go low because the fat "slows" the carbs down and the insulin hits before the carbs. Then later, as the fat makes its way through the digestive system, some portion of it turns into glucose causing a spike. there is also something about fat causing a temporary insulin resistance. Both of those things conspire to pump up the numbers hours later...sometimes even 12 hours later. It all depends on the food and how your son's body digests it.

    One of the best sources of information about clinical trials is Joshua Levy's blog

    http://cureresearch4type1diabetes.blogspot.com/

    One theme about clinical trials and diabetes, is that most of the trials require participants to be 18 or over, which is at odds as to when most of the population is originally diagnosed with Type 1.
     
  9. obtainedmist

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  10. MichelleW

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    Thank you! Using the link you posted, we found 2 trials related to preserving beta cells during the honeymoon period and I've heard back from 1 already.
     
  11. obtainedmist

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    I am thrilled for you! We are very involved with our JDRF Chapter in Denver and this makes my day to hear your success!
     
  12. Ali

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    Life will be easier with a CGMS and a Pump. However I would actually get away from the idea of perfect numbers:):) Going low and going high is going to happen over the next 80 years for your son, however maybe in 20 years they will have some pretty great options to reduce the highs and lows:). Breathe, think of the next 80 years in terms of long term care. Good luck.
     
  13. MichelleW

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    We are now 8 weeks post diagnosis. About 4 weeks ago we made the decision to go low carb and haven't looked back. He's between 70 and 140 about 98% of the time according to the Dex report. His diet includes about 50g carb per day and 100g protein per day. His standard deviation now is 25 with small spikes instead of large ones and his estimated A1C is 5.7. This feels sustainable and is low stress. We also switched from Lantus to Tresiba which further decreases hypo risk.

    He had a virus with fever one weekend. Because of the Dex and the low carb diet we were able to keep him safe and in range with max peaks at 200 during those 2 days. We had to adjust dosing but it felt safe because we did it in half unit increments and with the CGM.

    At school he wears a spibelt which has a small roll of 4g glucose tabs and his iPhone SE linked to his Dex G5. He knows to pop a tablet if he feels low or the monitor reads less than 75.

    We're doing great. He's happy and healthy. Those first days were hard but now...we've got this down. He still plans to go to Yale or MIT in 10 years but instead of paleontology is considering Medicine.
     
  14. StacyMM

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    Welcome :) Diabetes is always there, but it will not always be the one thing that crowds into your thoughts and hangs out all day. It really does get easier. My daughter was diagnosed 10 years ago and my son 4 years ago. Both are typical teenagers with hobbies, sports, clubs, friends, etc. Life changes and you adjust. Things will go on :)

    With the superhero analogy, I highly recommend Even Superheroes Get Diabetes. Love the book and he's at a good age for it.
     
  15. MichelleW

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    It's been more than 8 months since diagnosis. We've all come to accept our new normal. My son is doing very well - he isn't very bothered by the T1D. There are two reasons why our lives are very balanced and happy: the Dexcom and the low carb diet. There are hard days with growth spurts and sports but overall the hard days aren't that hard. I've relearned how to shop and cook.

    Breakfast is usually buttery broccoli, eggs scrambled with cheese and heavy whipping cream, and sausage or bacon with a mug of green tea and a multivitamin and vitamin D. Lunch is often lunch meat rolled up with cheese, cucumber and carrot sticks, a handful of nuts and a strawberry. Dinner is often steak or crab cake or grilled chicken and cauliflower rice. Snacks and dessert are almond flour Lily's chocolate chip cookies and a 1/4 cup of sunflower seeds.

    We are living our lives with optimism and confidence.
     
  16. Christopher

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    I'm just curious, why not let your son eat what he would normally eat as a 7 year old and just give the correct amount of insulin to cover the carbs in what he is eating? Did a doctor advise you to adopt a low carb high protein diet? If so, did they also explain the risks?
     
  17. graceandmercy

    graceandmercy New Member

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    Hello Michelle.

    I'm sorry you and your son have to go through this.

    I'm posting a bit late, but maybe my advice will still help.

    I'm a 19 year old diabetic here, diagnosed when I was two. Here's the good news, the bad news, then more good news.

    Good news: Your son will have a life. He will go to sleep-away camps in the summer. He will play sports. He will have sleep overs. He will eat cake at birthday parties, get pizza with friends, go to the beach. He will go to high school, dance at prom, go to college, have a girlfriend. Yes, he will have a wife and children. Yes, he will go away to college. There is not a single thing that diabetes will keep him from doing.

    Bad news: Diabetes sucks. It does. There are finger pricks, and needles. There's carb counting and meal planning. You'll have nights where neither of you will be able to sleep. You'll have unexplained highs and scary lows. There will be times where your son will have to sit out from play for a bit to correct his blood sugar. There will be times where he will have to test in the middle of class and explain to his classmates what he's doing. People will make cruel judgement and false assumptions. There will be challenges, frustrations, and problems. There will be pain. And there's nothing you can do about it.

    The best news: Your son is strong. Yes, diabetes sucks, and it's a burden, and sometimes it will feel like it's too much. But he'll always make it through it. Together, you'll learn how to use the monitor, count carbs, and give injections. You'll find the best way to treat lows, and learn to calm down when his blood sugar readings are high. I'm not going to lie and say it's all sunshine and rainbows, but every day will get easier and easier, and you'll find strength you never knew you had. Diabetes won't stop your son from doing anything. Whether he wants to be an Olympic swimmer, travel the world, or climb Mt Everest, diabetes will not keep him from thriving.

    As a type one diabetic for 17 years, I can guarantee that his quality of life will be awesome. I promise.
     

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