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babies on CGM

Discussion in 'Parents of Children with Type 1' started by natallia, Jan 23, 2012.

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  1. natallia

    natallia Approved members

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    my 10 m.o. was dx with T1 two weeks ago. I am trying adjust his insulin (novorapid and Levemir), but we are having a lot of lows! Especially at night.Last night I had to check his bs every 30 mins, because it dropped to 1.8 (32) and it took good amount of maple syrup several times to bring him back to 7 (then it went all the way up to 17 (300).
    The worst thing, I cannot tell at all by looking at him if he is low. he would be playing and bubbling with sugar around 2.6 (46).
    Don't know what to do. I try to keep his carbs and meal times in the same range everyday, but never get consistent numbers.
    I read about CGM and think more and more it would be something for us.
    Does anyone know if it's suitable for babies at all?

    thank you so much!
     
  2. Lisa P.

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    You can sure try, I love CGM, but the problem is that in little kids the bg moves so darned fast that sometimes CGM doesn't give you the best info. I liked it because I'd rather have some info than none in between checks, but my kid was a toddler, not a baby.

    Hope you get good answers here.

    If you want to post numbers folks can probably help you talk through things.
     
  3. natallia

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    thank you so much, Lisa! I have been tasting him so much, I went thru my month supply of strips in 10 days! One of docs said not to test him this often and usually once before meals is enough, but how can it be enough?
    If I had not test him at night his 1.8 low would probably go even lower, because when he gets low it goes down fast! - from 9 (160) to 3 (54) in 20 minutes. This really scares me.
    his numbers last night:
    9pm - bottle of formula - .2 IU novorapid
    11pm bg -15 (270)
    12.30am - bg 1.8 (32!!!)
    gave maple syrup 3 tspoons(he was too drowsy for juice)
    1am - bg 10 (180)
    he is on Levemir 2.5 IU in the morning. Was also on 0.5 levemir at night, but I stopped giving it to him because of the scary lows at night.
    He is still low!

    Called Minimed this mornign, ) they kept bouncing me from one person to the other for 40 minutes) about possibility of CGM for him, they said they will call back, but so far nothing. Very discouraging..

    I cannot NOT test him less, but my poor baby does have a finger/toe left without numerous pricks..
     
  4. natallia

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    Does anyone else have a baby under 1 years old with DT1? I feel like I am the only one..:(
     
  5. cdninct

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    I know of two families who have babies (around 5 mos. and 18 mos.) on CGMs. Both have just started, so they are getting the bug worked out, but in terms of the practical stuff (like finding places to put the sensor), it seems to be working just fine.
     
  6. Christopher

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  7. Jilleighn

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    my daughter was not under 1 but was only 19 months old when we started the cgms. I would push it hard. What are his numbers through out the day? My daughter was on lantus and novolog. When she was Dx with type 1 she started out on 2.0 units of Lantus 1 time a day. We ended up dropping it to 1.0 unit for a while because of activity, but shortly brought it up. Have they talked to you about pumping?
     
  8. mmgirls

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    your child may be entering a honeymoon and will need the Lantus lowered. 2.0 units seems like a large dose for a 10month old, but then again i had little babies.

    I would totally advocate for a CGM, we are on Dexcom and I can see being able to fo it for a little one.

    Actually my second child we are watching for "D" and we would choose to do a CGM before the pump, enen with its flaws it is vauable information for in between checks.

    Please do check into monogenic diabetes, testing is free from the university of chicago in the us. just a cheek cell swab test.
     
  9. mamateach

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    Diagnosed at 11 months...

    My daughter, Lily, was diagnosed at 11 months in April 2011. It is REALLY frightening as they cannot tell you how they are feeling and you never know what their blood sugar is doing while they are sleeping... Not to mention the fact that you never know what they will eat or when they will want to eat. That being said, we did go into a honeymoon period where she required less insulin. I think her pancreas started to recover a bit as it didn't have to work so hard to produce insulin. We adjusted her dosage pretty much every two weeks for the first 4-5 months. We put Lily on a pump when she was about 14 months old. It was a hard adjustment at first but now I wouldn't trade it for anything. We got the Animas Ping because we wanted to make her life as "normal" as possible and not have to pull out the pump every time we wanted to bolus her (snack in the car, etc.) We have considered adding a cgm but already have trouble finding sites on her skinny little body for the pump site. We also just found out about the MySentry from Medtronic which has a nighttime alarm system that syncs with their combo pump/cgm. Unfortunately, this pump does not have a remote and I don't know if I am willing to trade the remote for the integrated cgm at her age. Sorry for the ramble... The point is, you will probably make adjustments to her dosage nearly constantly as she is so tiny and constantly growing. We did ask our endo to prescribe more test strips and we were able to get 15 strips per day. We don't always use them all but they are nice to have in case. Also, you may want to look into a blood ketone meter as it is so difficult to get a urine sample in a child so young. It has been a life saver for us on several occasions. If you have any questions, feel free to contact me. The first few months are so sad and scary and lonely but things do get better. Lily is healthier and happier than she ever was before diagnosis and has really adjusted well to all of the pricks and site changes, etc.
    Jessica
     
  10. Dad of Daughters

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    We started the CGM at 17 mo's, dd was diagnosed at 12 months. We are very pleased with the results we've gotten since that time and owe a lot of it to CGM use, especially in those early days. If I can provide any kind of infant-specific or CGM related help, please let me know. You can do it!
     
  11. zoomom456

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    I'm sorry you are having such a tough time right now. Babies with D are hard to manage. My son was diagnosed at 13 months and D was definetly life changing. One of my friends started her baby on a CGM right at 1 year, and she said it was a life saver. She also put her little one on a pump ASAP. I think her daughter was diagnosed about 11 months.

    I agree that 2.5 units of Levemir plus Novorapid seems like a lot of insulin. My son was started with 1 unit of Levimir once daily and that was all. We were lucky and our son was in a study that caught his diabetes very early and he honeymooned as soon as we started insulin.

    As for test strips our endo sent a prescription for 10-12 test strips daily.

    We are now 2.5 years into our D life and I can tell you, it does get better. Let me know if you have any questions:cwds:
     
  12. Lisa P.

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    Selah started on one unit of Lantus at 17 months. I can't imagine 2 to 3 units of Levemir being right, and if you're seeing lows it seems reasonable you have far too much basal on board.

    What is the Total Daily Dose (total units of Novalog and Levemir, on average, throughout the day)? In theory you should be 50/50 basal (levemir) and bolus (novalog) but we find we need about 1/4 of our TDD in basal, and I think that's not unusual in small kids. In either case, it seems likely you are more like 75% basal? What you will see with that often is a drastic high after a meal (because there's not enough fast acting to cover the carbs) but then a deep low three to five hours later (because the basal drags the number down because it's too high). I don't know if that is what you're seeing, because frankly when Selah was littler it was pretty normal to go over 250 in the two hours after a meal no matter what we did -- bg just moves very, very fast in small children.

    As for testing, before we had the CGMS we tested on average 12 times a day, up to 15 times a day, and there were spurts it was higher. Selah was diagnosed almost 4 years ago at 17 months and so our situation was very different, but I sympathize with the struggle.
     
  13. mrcool

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    Sorry for your baby's dx...It's very hard, I remember those early days and how everything seemed so challenging. Hand in there, it does get better.

    My son was 7 months old at dx. I remember we went down to as low as 1 unit of Lantus, and he'd still go low at night. So doses might keep going down.

    Getting a pump when he was 12 months old was life changing. We would have got CGM as well, but our insurance didn't cover it yet. We ended up getting it when he was 22 months old, and that has been yet another life changer. Definitely look into it, it's a very valuable tool.

    Our endo supported all our requests, even though sometimes a little unwillingly (he's a bit old school). There were no insurance issues once the rx was sent. Another thing - our endo practice had no experience with young babies like mine, so I learned a lot here.

    Ask if your endo practice can lend you CGM systems to try out; ours offered that and it was very helpful in deciding which system to go with.
     
  14. Cookie Monster

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    First of all, it does get easier!

    When our son was very small he had huge swings so the numbers you posted are not all that surprising, although frightening at the time. We had a pump pretty much from the outset which has been wonderful. A small amount of insulin can make a huge amount of difference in such a small child. Being able to give the tiny doses that are possible with a pump really helped. Also not having to use long-acting insulin has been great. I'd hate to have him go low and know that he has hours and hours worth of insulin on board.

    Pumps are not for everyone but are something you should consider. Sometimes insurance is an issue but I see you are using mmol/l so I guess you are not in the US. Hopefully you are in a country where a pump is an option. We are lucky to have ours fully funded as well as consumables.

    I'd agree with Lisa about the basal/bolus ratio. Medical staff seem to have a thing for getting 50/50 between basal and bolus but that would give us wild fluctuations. Our regime currently is closer to 25% basal, 75% bolus.

    Also, don't aim for too low a target blood sugar. In infants this can be dangerous because of the huge swings that you are experiencing. Our son is 3.5yo and his HbA1c is 8.5% which might be a bit disappointing in an older child but we think is good for him. To try to get it lower would mean him having too many hypos.

    I know what you mean about fingers and toes. When our son was a baby we used heels for pricking, moving on to toes then eventually fingers.

    We have only used CGM for short periods just to get an idea of what his blood sugars are doing so we can make adjustments.

    And we use 8-10 strips a day now. I think we used about 12 when he was a baby. I would not hesitate to use as many as I thought necessary.

    You are just starting out on this journey. There is so much information for you to process at a time when you will be exhausted dealing with this diagnosis but you have done the right thing in coming here. If you have any questions just ask.

    As others have suggested monogenic diabetes is a possibility. My son has a form of monogenic (there are quite a few forms) so again just ask if you need to.

    And just to reiterate: it does get easier!
     
  15. smcnair

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    Have you thought about going on a pump? Our son was diagnosed at less than 5 months and started pumping right away. I did ask his endo about the CGM at one point but she said they prefer not to use them in someone his age unless absolutely necessary.

    Also, there is the possibility that your child has monogenic diabetes and it isn't always diagnosed before 6 months of age. Christopher posted a link re testing anyone diagnosed under 12 months, but I only found out a year ago that I have monogenic (PND) and I was diagnosed with Type 1 when I was 18 months old.
     
  16. Lovemyboys

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    My son was diagnosed at 13 months old. He was sent home on 1 unit of levemir, and .2-.4 novolog, then after a few days we dropped e levemir to 1/2 unit and then dropped it altogether. If your son keeps going low, especially at night it would seem his honeymoon is kicking in and he needs less, or no levemir. For us, as my sons bgs came down, I think his beta cells recovered some and he was off long acting for a while (even when he was on the pump he wasn't getting any basal at night for several months?). We got the pump because he needed so little insulin that we had to get diluted insulin. The pump is great for giving small amounts of insulin.

    At 15 months we got him on a pump and at 16 months a cgm. We had to fight for the cgm. The cgm has been a life saver for us. Our son couldn't talk, didn't recognized lows (still doesn't at 2 1/2). We don't ever treat off the cgm, we always test first because sometimes they are not accurate. For us, the cgm didnt cut down on the number of finger pokes (we still test an average of 13 times a day), but it has let us get some sleep at night and keep his blood sugars in a lower range. We still check him usually about 2 times in the night, but it would be a lot more if we didnt have it.

    I have a little 10 month old and I look at him and think in 3 months he'll be the same age as my other son was went he was diagnosed. I even said to my husband, how did we do that? My heart goes out to you. As others have said, it will get better, but it does take some time.
     
  17. Lisa P.

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    One other thing on the testing -- MULTICLIX. It makes a huge, huge difference. Try it yourself and you'll see. Most of the lancing devices that come with the meters are medieval.
    :)
     
  18. Lovemyboys

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    Great point, I second this! We switch to the Mulitclix after some people posted about this and our son's fingers don't look like pin cushions anymore. My husband and I both did a comparison and it really hurts less! The one disadvantage of it, for us, it that because the hole is a little off center it's sometimes harder to get a poke in the middle of the night when we're half asleep. But that's a minor issue.
     
  19. ecs1516

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    My youngest was diagnosed with type 1 at 10 months old. We got him on the pump but CGMs were not out back then. After using them now I would had love to had one.
     

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