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Parent to newly diagnosed 5 year old, lots of ?'s!!

Discussion in 'Parents of Children with Type 1' started by MCO222, Dec 26, 2016.

  1. MCO222

    MCO222 Approved members

    Dec 11, 2016
    My 5 year old daughter was just diagnosed a month ago on thanksgiving. She is still in her "honeymoon" period, she only needs .5 unit of levemere and her carb ratio is 100 to 1 currently so managing everything now I know is different than what it will be once her pancreas stops working completely. So I have some questions about what the future is going to be like. I've been following t1d bloggers and reading stories and something that is really starting to scare me is reading about lows, especially at night. Is this a common thing? As parents do you still do nighttime checks every night? How many times do you check blood sugars overnight? Is it the same if your child has a cgm? How much can you rely on the cgm for accurate readings? If I can see on my phone that the cgm is reporting a good number then can I rely on that and let her sleep and not wake her to test? Also, what's everyone's opinion on diabetes dogs? I know they are not necessary to mangage diabetes but if you were able to get one would you? She's just so little, she doesn't always recognize when she is high or low. I have a feeling I will never stop worrying no matter how big she gets but I'm just wondering if these tools will ease my worry a bit. Thanks in advance for all your input and experience!!
  2. mikegl31

    mikegl31 Approved members

    Mar 13, 2015
    Hi MC,

    I am sorry to hear about your daughter. You found a great resource here. My son was also 5 when he was diagnosed. He is now 7.5. I didn't believe it at the time, but it does get better. He lives his life just like every other 7 year old in 2nd grade. I'll try to answer all of your questions

    Lows are a part of this disease. Its a balancing act of giving enough insulin to not go high, but also, not to go low. However, there are so many things that impact blood sugar - activity, for example, that make balancing the insulin difficult. We have had 2 bad lows (in the low 30s), and generally hit the 50s on a weekly basis. It certainly is something to watch. But we treat the number, and move on.

    We check our son pretty much every night. He wears a CGM, which is great. We generally trust the CGM and there are good stretches of time where the data we are getting is very accurate. However, you also find sensors that are not as accurate. The CGM lets you set ranges on your phone, and when the blood sugar goes outside of those rangers, the phone alarms. So we have our ranges set at 75 and 150. How many times we check at night varies from night to night, depending on if we are trusting the current sensor, and how many times the alarm goes off at night. Unfortunately, diabetes does not sleep at night, and I can't sleep if I know my son's numbers are out of range. He does have occasional lows at night, and we wake him and give him some juice. We are a little more conservative with the insulin at night so as not to send him too low, but there are times he drifts into the 60s, and that is too low for me at night. If the CGM is showing that my son is in range - and therefore not alarming - I am probably sleeping, and will not test my son.

    Before we got the CGM, we set alarms to wake up around midnight and again at 3am to check. It stinks, but it gave us peace of mind. We don't have a diabetic dog, but I actually saw someone at Disney World last month who had one. I hear they are very expensive. I love the CGM, and they are only getting better and more accurate.

    I think parents will always worry about their kids, no matter what. Yes, this adds a new part to the equation, but it is something that will become part of your daughter, and part of your family. It does get easier. You will learn so much over the next year. Don't overwhelm yourself, and don't think you have to be perfect - perfection with this disease - especially with little kids - is not possible, so don't get down on yourself. My main goal is to make my son feel like a normal kid, while also keeping him safe and healthy. The pump and CGM will definitely help you in those areas. But at this point, take it one day at a time, read everything you can, educate yourself, and help your daughter be a normal 5 year old.

    Good luck!
  3. rgcainmd

    rgcainmd Approved members

    Feb 6, 2014
    Regarding a DAD, I trust my daughter's Dexcom over a dog. The Dexcom is "on duty" 24/7. A DAD, not so much.
  4. obtainedmist

    obtainedmist Approved members

    Aug 3, 2010
    If our daughter had been dx'd as a young child, we would have had her on a dexcom as soon as the insurance approved it!
  5. Butterfly Betty

    Butterfly Betty Approved members

    Dec 8, 2010
    I'm sorry for your daughters diagnoses. My daughter was diagnosed at eight. She's fourteen now. I check her every night at midnight, three a.am., and between six and seven. I've caught way too many lows/highs to stop checking her now. Our insurance doesn't cover a CGM, but I'd love to have one for her. And I think Diabetes Dogs are great, but they aren't perfect, and I doubt I would trust them or CGM 100%.
  6. fiaz

    fiaz Approved members

    Jan 3, 2012
    Lows are not a common thing once you have the night-time dosages figured out. They don't have to be perfect, but you will get a good feel for how to avoid lows. A cgm (dexcom) will be best. Sometimes it may be inaccurate but the benefits far outweigh the negatives. We used to test our daughter just before going to bed and again at 2 am and then around 6 am in the morning. Now, we just trust the dexcom G5. It is highly accurate most of the time. Our daughter is 7. Sometimes she has the same symptoms for highs and lows. If our daughter seems restless during her sleep, we sometimes test her just in case.
    You also need a go-to juice (we use apple juice) nearby that she wont mind taking in the middle of the night, half-asleep.
  7. MCO222

    MCO222 Approved members

    Dec 11, 2016
    Thank you for all the helpful info! The dogs are very expensive, I'm wondering about training one ourselves. I am going to get a cgm as soon as humanly possible but I'm wondering if I'll feel even more comfortable if I am able to utilize both. On the flip side to that I wonder if I will still be a paranoid bundle of nerves with the only difference being I now also have a new dog to take care of! Thankfully so far we've only experienced highs at night. She's only been diagnosed for a month though so really I have no idea what it's going to be like going forward
  8. mom24grlz

    mom24grlz Approved members

    Mar 30, 2010
    I’m sorry to hear about your daughter’s type 1 diagnosis. My daughter was diagnosed at age 11 in 2010.
    Ashleigh does have times of frequent lows. Trying to get her Lantus adjusted right is the key to it. I did recently make changes and she hasn’t had a night time low in the past 2 days (yay!).
    I still do check Ashleigh’s BS every night. Normally every 3-4 hours I’ll do in and do a check. Unless her CGM alarms indicating a low, then obviously I’ll check then. But there have been times I’ve checked her and she’s been in range, and then an hour later the CGMs alarming that her BG is 75 or lower.
    We do not have a diabetes dog. They’re pretty pricey and you have to remember that in addition to the initial cost of the dog, you’ll also have to pay for food, vaccinations, spay/neuter and general vet appointments. Plus I’m pretty sure you need to keep reinforcing the scent training and whatever else it requires for be considered a DAD. I don’t think I’d pay thousands of dollars for a DAD, but if we couldn’t’ get a CGM, I would possible look into training our dog we already have. But no a dog is a lifetime (for dog) commitment. I wouldn’t just buy a dog to be used solely to detect blood sugar levels.
  9. Snowflake

    Snowflake Approved members

    Dec 1, 2013
    That's news to me! :) Last week, my daughter had several nights in a row of flat-line traces around 120 and I was feeling very confident in our basal settings, until out of the blue one night she had two lows in the 40s around 2 a.m. for no appreciable reason. As she has grown up and our control has improved, she probably still has one overnight low -- usually mild -- per week.

    This is why the CGM is such an amazing technology. Yes, lows happen, but with CGM, we know about them, treat them, and go back to sleep.

    To answer the OP's question: When I'm the parent on overnight duty, I sleep with the Dexcom on my pillow and I look at it when I happen to be up, but I don't set an alarm to do pokes anymore. I think we get slightly less Dexcom accuracy than other CWDers, probably because the algorithms aren't quite as precise for younger patients, but the Dexcom is good enough on the low side that I don't feel the need to set an alarm for bg checks anymore (my husband still does on his nights because he's a heavier sleeper than I am).
  10. cdninct

    cdninct Approved members

    Jul 29, 2011
    Every child is different, and while some lucky few have kids who stay stable over night, many of us have kids who regularly have lows and highs despite plenty of experience and careful control. I agree with those who say that night checks are an essential part of their routine. It's not fun, but for many of us it is a necessity. I also agree that CGMs are amazing. We do not always check at night if we know that the CGM sensor is reliable and numbers are looking good.

    Welcome, by the way, but sorry your have to be here. The first while is pretty overwhelming, but it does get better!
  11. dpr

    dpr Approved members

    Dec 17, 2013
    This^^^!! We have a DAD and have the exact same issue. Service animals can be a PITA. There's a lot to them. A Dexcom GGM with the Share app is pretty much the gold standard and will help and provide you constant information that your whole day revolves around 24/7. They should send every one home from the hospital with it.

    My daughter was diagnosed at 5 and will 11 in 2 weeks and is a normal kid in every way. The first year is REALLY intense, hang in there!
  12. barbiduleny

    barbiduleny Approved members

    Nov 28, 2015
    Sorry about your diagnosis, one thing i'll say is that it WILL get better.

    To your question, our son was diagnosed a year and a half ago at age 4, so it's still fresh.

    We don't do overnight checks anymore. We did a 3am check for the first 3/4 months, then got the DEX :)-)) and have been relying on it to wake us up if our son goes low. We are finding that the Dex, if properly calibrated and with a 'good' sensor is just as reliable as a fingerstick.

    I cannot emphasize enough how much having a CGM helped us better manage our son's diabetes, understand patterns, adjust carb ratios and insulin dosing and deal with nights with much reduced anxiety.

    Re: Lows. We do have lows. Lows will come when you manage things fairly aggressively and try to stay within range as much as possible. We'll see lows in the 50s on a weekly basis and in the 70s on a daily basis. These will happen at night too which is somewhat counter-intuitive given the fact that food and exercise don't get in the mix, but hey, that's pretty much diabetes for you: anytime you think you have it all figured out the ground shifts on you and you'll see unexplained lows or highs.

    Learning to let go and accept that these transient highs or lows are part of the deal really helps over time with overall management.

    re: recognizing lows and highs. Our son doesn't notice them at all and will keep on going like the energizer bunny at 40 or 50, we rely on the dex to catch these and correct or give juice as proactively as possible.
  13. quiltinmom

    quiltinmom Approved members

    Jun 24, 2010

    As to "feeling comfortable," this is something that comes with time. No dog or cgm or any other device will make you feel comfortable. ( I wouldn't read too many blogs either. Stick with good books and your endo's advice for now.). Going forward, tomorrow will be a lot like today. You may have an occasional "bad day" but changes are generally gradual, not overnight. You learn to trust your instincts, which takes away a lot of worry. In the end though, some people just need to choose not to worry. Choose to trust yourself. Trust that you will learn what you need to learn when you need it. Only then will you stop being s "bundle of nerves" and be able to move forward with confidence.
  14. WestOfPecos

    WestOfPecos Approved members

    Dec 12, 2016
    So sorry about the diagnostic, particularly on Txgiving.

    Everything is so individual with diabetes. So our experience may not quite apply. I feel I am writing what other parents have written already. But here goes.
    Sometimes we don't get lows for weeks at a time, and sometimes we get several in one night. Our son (12 years old) typically wakes up when he hits a bad low. We have all his gear right by him at night. We did night checks for quite a while, poking him around 1am (that's typically when he ran low). But we stopped doing it before his got his Dexcom because he woke up on his own. Our endo suggested midnight and 3am as the times to do it, btw. When he did not have a Dexcom I was anxious every night, though.
    The funny thing is that, with the CGM, we have at the same time more and less lows. We set his alarm at 85, so that he has time to take some carbs before he is actually low, because everytime you are low, your body gets less responsive to lows. So he gets woken up more often. But he has never gone below 65 since he got his Dexcom. I feel 99% safe with his CGM.
    After the first 24 hours, his CGM numbers are very accurate, until it starts failing, typically about 2 weeks later. Again, that is for a Dexcom. There are some exceptions when we did not do a good job at sensor install time, or just if it is a bad site. But, if you take good care when you insert the sensor, you are good. After the first few weeks we have never tested him beyond the CGM.
    Most people seem to feel the a good CGM is the way to go. We do - although we don't have a DAD, so we can't really compare. I sometimes think that it may not be a bad thing when he goes to college. I am worried about what may happen when he is alone at night. But I am probably worng:)

    It does get easier after a while btw. One thing I'll mention is - when our son was diagnosed, we decided we wanted him to live a normal life. So he does what every other boy is doing - lots of extra curriculars, lots of sports, sleepover, sleepaway camp - everything. He is a soccer goalie (he has had to play low a few times but it still worked out). He swims in a competitive swim team, skis, plays volley ball. He is in forensics, jazz band, lots of music activities, math club etc. We found a club where they will let him learn to scuba with his endo's agreement, and we plan on letting him do it when he is 16 if he is mature enough.

    Of course, each sports activity means a lot of preparation for us. I attend all of his swim practices. he has to come out every 20 minutes to test. I hold his CGM receiver close to the goals so i can see how he is doing. In the last game when he was low (a bad lunch dose a couple hours before) I had to keep feeding him skittles every 5-10 minutes to keep him at 80, when we like him to be around 140-150 when he plays. During swim meets, his adrenalin makes his BG go every which way. But it does not matter. We are learning to deal with all of it and so is he. He does everything himself, because we want him not to have to depend on us, and because he is naturally independent.

    So, you see, your child can do anything - as long as you are willing to spend the time to learn how to deal with it:)
    Last edited: Jan 3, 2017

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