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8 year old son Dx 4/20

Discussion in 'Parents of Children with Type 1' started by GRae&JsMom, Apr 17, 2017.

  1. GRae&JsMom

    GRae&JsMom New Member

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    Hello:
    My 8 year old son was diagnosed on 4/20. I noticed his symptoms and took him to the pedi. He was hospitalized for a day and then we did an out patient day treatment program for 1 day. Somewhere between the pedi and hospital he picked up the flu which myself and 10 year old daughter also got! Sick management nearly put me over the edge. We are settling into our new reality but I have a few questions. His numbers have been running really low and they lowered his Lantus last week. He is still running pretty low 70s-130s and not requiring much Humalog. I know this is the "honeymoon" phase. Just wondering how long this typically lasts. Also, there have been quite a few times where he has been on the low side but is saying he is not hungry but we are making him eat a snack anyway. For example at bedtime tonight he was 99 but said he wasn't hungry but we made him eat a snack anyway. Lastly, we are still waking him up at 2:30am to test every night. I am super nervous about him going low overnight but at the same time am exhausted since I cannot get back to sleep after I test him. Just wondering how long on average we will need to be testing him at 2:30am? I have a feeling my husband and I will never sleep the same again regardless. Lastly, our nurse educator brought up the CGM. I am just wondering what the average cost/month a CGM is? Also, neither myself or my husband have smartphones so not sure how that would work anyway. I just don't know if this is something we can afford on top of the insulin, supplies and copays.
    Thank you!
     
  2. mom24grlz

    mom24grlz Approved members

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    I know this is the "honeymoon" phase. Just wondering how long this typically lasts.

    it varies from person to person. It can last anywhere from a couple days to a couple of years. Some people (like my daughter) never experience a honeymoon phase. My nephew's lasted over a year.

    we are still waking him up at 2:30am to test every night. I am super nervous about him going low overnight but at the same time am exhausted since I cannot get back to sleep after I test him. Just wondering how long on average we will need to be testing him at 2:30am?

    Again it depends on your family. Some do not do night testing, some only test if they've made changes to insulin, some if they type 1s had an overly active day, ect. And some choose to test every night. I choose to test my daughter every night. I usually test every 3-4 hours throughout the night. more if her CGM alarms saying she's low.

    I am just wondering what the average cost/month a CGM is?

    it's really going to depend on how much or little your insurance is willing to cover. We use dexcom g4. for 4 sensors it's around $300-$350. 1 sensor is FDA approved for 7 days, but you can make them last a lot longer. Ashleigh normally wears her sensors for 14-21 days. I think the transmitter is around $600 and i can't remember how much the receiver is. It's been a while since i've had to buy a transmitter and/or receiver.

    Also, neither myself or my husband have smartphones so not sure how that would work anyway.
    you can still use them without a smartphone. I don't know about the G5. But we have the G4 and Ashleigh just carries around a receiver and views her BG numbers and graph on it. The only bad thing about no smartphone is you won't be able to "follow" him. (that is view his numbers without looking at his reciever) UNLESS you have an ipod or ipad with wifi or data. If you have either of these it's still possible to view his blood sugar numbers on them.


     
  3. MomofSweetOne

    MomofSweetOne Approved members

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    Hi! The cgm is a marvelous tool in diabetes management; I highly recommend it. We did a year without and would never want to go back. The Share feature wasn't an option when we started using it, and it was/is still incredible. Share allows the kids to have more age-appropriate independence safely. My daughter went half-way across the country at 15 with no one that knew diabetes, and we managed together remotely.

    We rely on the cgm to alert us when we need to be up. CGM was so new when we started that our team required I set an alarm as well, but as they and we became more comfortable with the technology, they lifted that requirement. Now people are "looping" and having Dexcom run their pumps and dosing insulin as needed. Several commercial systems will be out next year that use the Dexcom in that manner.

    We pay 10% of Dexcom expenses, so $30 per box. We typically get 10-11 days per sensor; they're guaranteed for 7. We tape them extra with Opsite Flexifix or Hypafix so they don't come off.

    Was he diagnosed 4/2?

    Think Like A Pancreas was my lightbulb after dx. I found it at a library and was thrilled to find an explanation of what the nurses were seeing in the numbers and how they were adjusting doses. When you can breathe, read it. The sooner you're comfortable adjusting insulin for yourself, the better off your child will be. There's no way a dr. or nurse can look at the numbers and know which ones to toss out when making decisions the way you'll be able to. Every number has a story (and every story has a number), and it's important to take the stories into account when adjusting.

    I'm sorry you've joined the club but also glad you've found your way here. We've all been in your shoes and are willing to help however we can.
     
  4. GRae&JsMom

    GRae&JsMom New Member

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    Thank you both I truly appreciate you taking the time to answer my questions!
     
  5. Brhodes

    Brhodes Approved members

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    My son's honeymoon phase only lasted about 3 months. During that time his Lantus dropped to 0. We tested every night sometimes multiple times depending on his levels until we got the CGM. Now we still have to wake up most nights but it's just a quick peek at his levels. We pay 20% of the sensors which is about 70/months supply but we've been having really good luck lately and get at least 2 weeks from every sensor so really it's like $35/month. The transmitters cost us about $100 each, but if you go with the G4 instead of the G5 a sensor should last close to a year if not more.


    Also be sure to check into copay cards. Humalog offers assistance if you qualify financially, but novolog, apidra and lantus cover copays up to a certain amount. Humalog, novolog and apidra are all virtually interchangeable. Many test strip companies offer them too.
     
  6. Ali

    Ali Approved members

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    Brhoades, great advice but as you know YDMV and for me Apidra is very different from Humalog or Novolog and while you can use them all as quick acting insulins the way I use Apidra is quite different. For me Apidra does not involve any, or like 5 minutes pre bolus while the others took a 20 minute pre bolus, the action curve was also different between the three of them with for me Apidra having a much shorter tail than the other two. So
    while you can use all of them you may need to adjust timing and issues relating to peak action and tail action if you switch.
     
  7. sszyszkiewicz

    sszyszkiewicz Approved members

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    First of all....I am sorry this happened to your child. It was great to see that you knew the signs and got help early. It is also good to see that you are settling in, and its clear you have been learning a ton. :)

    Re: Night checks.
    Its a touchy subject as different parents have different levels of risk tolerance, and no matter what position you take, you are bound to annoy someone.

    It is better to think of it as a 4 hour after bedtime check, assuming you check right before bed, instead of 2:30AM.

    So here is the reality:
    - diabetes does not care if its the middle of the night. Diabetes does not play fair.
    - you would not let your child go without a check for 8 hours during the day.
    - numbers can drop (very) fast under certain circumstances.

    So I am telling you that even if you check 4 hours after bedtime, there are going to be times where your child was low for hours before you discovered it. Certainly not every night. But it will happen. That is the way diabetes is. Like I said, every family deals with that their own way.

    The CGM checks every 5 minutes and alarms you when things get too low or too high. Sure your child may still go low, but it will not be for long, and it really minimizes the chance of something bad happening. It makes the game more fair.

    Also, on the bright side, there is some cool tech that is coming available that has the potential of making things quite a bit easier for us and our kids. Look up "artificial pancreas" or "bionic pancreas".

    Again, sorry you are here, but you will do fine.
     
  8. wilf

    wilf Approved members

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    If he is honeymooning, then his still-functioning pancreas will be pulling him down to the 60-80 range every night. You can't feed him enough to keep his blood sugars up over 80. So you need to always keep the big picture in mind. If he still has bolus/correction insulin working and he is too low for comfort, then you need him to have a snack or juice. But if his last carbs and last shot were hours back and he is drifting down to the 60-80 range try just letting it go and see where he ends up. You're measuring overnight anyways, so you'll have a chance to see how it's working out.

    In the honeymoon some children (our daughter included), will end up waking in the 60-80 range every day for weeks on end. That is where a non-D person's waking readings are, and that is where their still-functioning pancreas is pulling them. :cwds:
     
  9. Brhodes

    Brhodes Approved members

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    You're absolutely right. I shouldn't have been so careless with my advice. They are not the same and much will have to do with preference. We prefer Humalog, disliked novolog and have been satisfied with apidra.
     
  10. rgcainmd

    rgcainmd Approved members

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    Just wanted to add the following to the excellent advice above:

    Many endos are educated to view anything even approaching 70 as a "dangerous" low. I have absolutely no argument with some of this logic, as a true low can be imminently dangerous. But I feel strongly that not quite enough emphasis is placed on the longer term damage of high BGs. With time, I learned not to become alarmed with "low" BGs until they reach around 58 and are accompanied by a downward trending arrow. I'm sure this would not be the case if my daughter was not using her very reliable Dexcom G5. I am much more concerned with high BGs these days, and I instruct my daughter to correct every BG over 99. Again, I feel comfortable with this relatively tight range only because of three things: 1. My daughter's pump which enables us to set variable basal rates, temp basals, and extended boluses; 2. Her Dexcom G5 with Share (I cannot emphasize enough how much of a game-changer this amazing piece of D-tech is); and 3. The knowledge we've gained from Think Like a Pancreas by Gary Scheiner and Ragnar Hanas's book, the title of which I cannot recall at the moment and the experience that comes with hard time spent in the D-trenches.
     
  11. MomofSweetOne

    MomofSweetOne Approved members

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    We prefer to avoid both highs and lows. Even numbers in the 60s are stressing the body, and the more frequent they are, the less the body reacts overtime, which can be dangerous. We bump 70s to 100, especially if she can feel the shakes. And I'd caution you about not burning her out with expecting every number above 99 be corrected. Burnout hits in the later teens and it's severe. My daughter is maintaining a sub-7, but she doesn't correct until things hit 200 more often than I'd like. We are so ready to turn most of management over to an AP....
     
  12. DDmama

    DDmama Approved members

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    Starting on a CGM is the best thing we did to manage diabetes.

    As someone else said, you don't have to have a smart phone to use Dexcom, but the Share feature is ideal for parents helping to manage their child's diabetes.

    Regarding the cost of smart phones ... the minimum requirement for the sharer's phone is an iPhone 4S. Lower-cost (<$100) older generation iPhones can be found online. The Dexcom follower app is available for Apple and Android phones. I am not certain about the minimum requirements, but the same principle applies -- older generation phones can be found online. If you and your child have access to wifi most of the time, you could possibly forgo the extra cost of getting a phone data plan. You wouldn't have Dexcom data all of the time, but it could be very helpful.
     
  13. MomofSweetOne

    MomofSweetOne Approved members

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    Talk to Dexcom before buying anything as old as an iPhone 4s. My daughter called them before we bought her a phone after her old one died, and they told her that the iPhone 4s is basically a dinosaur and to go newer if purchasing. We got her a used iPhone 6 through Swappa. My 4s is still working well with the Follow App, at least for now.
     

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