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First Few Days What Can We Expect?

Discussion in 'Parents of Children with Type 1' started by andiej, Dec 30, 2013.

  1. andiej

    andiej Approved members

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    Hi all.

    My DS was diagnosed on Xmas Eve (yeah not quite the xmas we had planned) since then we have also been away for a few days so meals have been a bit all over the place, however we are now back at home so can hopefully manage and plan better than we have been doing.

    Hi readings swing all over the place sometimes the highs are understandable but sometimes not so much.

    Today for example he woke at 21.1 by lunch was down to 6.8 mid afternoon 8.6 when he had a packet of crisps then by dinner was at 13. Should i be surprised by this jump?

    What realistic expectations should we have for the first couple of weeks following diagnosis? Any tips on how to deal with it all and what we can expect would be gratefully received.

    Thanks in advance
     
  2. ksartain

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    I spent the first couple of weeks reading everything I could about it. I bought a couple of books and devoured them. I wanted to know as much as possible because I didn't know anything about T1D.

    So that's my recommendation, with this caveat. T1D seems to be a very personal disease. What works for one person may not work for another. You will make mistakes and you will hit home runs. Do not dwell. Learn and move on. We're only a year in and I know you'll hear much more sage advice from others here who have been living with it for a lot longer than we have. :)
     
  3. nebby3

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    Chaotic numbers were the norm Corvus the first few weeks (maybe months!). It takes a while to get the doses adjusted right plus their bodies are out of whack. Are you calling your endo's office daily? How old is your child? Was he in DkA? What kind of insulin do they have you using?
     
  4. KHS22

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    Welcome.

    I'm new here too. We are about 2 months in, and still have completely unexpected numbers all over the place. Like yesterday she was 20 half the day, couldn't get her down it seemed like no matter what we did. And today, with the same doses, she's been 5's and 6's all day. We shrug our shoulders and say "go go pancreas" on days like today - as she must be making a bit more of her own insulin than other days. I think that is one of the reasons their numbers are all over the place at the beginning.

    Like others said - its so so personal. I think the swings are to be expected. Note them, think about what may have influenced them so you can learn, but don't obsess over them. Sometimes, there really is no reason that we can see.
     
  5. kirsteng

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    Welcome, and so sorry about your son's diagnosis. :(

    My son was diagnosed last Christmas - December 23, at age 3 1/2. Really messed up our Christmas as well! This one was SO much better, as we now have learned so much about how to dose and adjust insulin. Don't worry, things WILL fall into place in the coming months.

    Don't expect too much of yourselves in these early days. I know that for the first 3-4 weeks post d/x, my son was in the teens and twenties most of the time. The endo purposely started him on very low doses and slowly increased for a few weeks until his numbers came in range. From what I understand, it's safer to do it slowly in the beginning, when they've been high for a very long while (my son's A1C was 13 at diagnosis, so he'd likely had high blood sugar for months).

    After about 4 weeks, my son started honeymooning, and his insulin needs dropped quite a bit. This lasted for most of a year, with fairly stable numbers and infrequent adjustments. Not everyone gets a honeymoon, and they do vary in length, but it could be starting in the next weeks for your child too.

    Anyhow, all the best to you.. and I'm glad you've found this forum, which is home to a lot of very experienced and insightful D people.
     
  6. Sarah Maddie's Mom

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    People (Drs included) act as though managing Type 1 is a simple science and if you just follow the formula you'll have a good run. Well, no... it's an art, a complicated, nuanced, gut reliant art. :cool:

    Start by leaning as much as you can about your tools - I like Ragnar Hanas' book, but there are other - understand how insulin works, when it peaks, how long it lasts: that will help you try and match food with insulin. Then log. Log everything for a while and look back at that to see if you can learn anything about how exercise, food, stress, hormones, growth, illness, etc etc have played a part in the numbers. In short - open your mind to the complexity of managing Type 1 and understand that the insulin that you dose it just a single piece of the puzzle.
     
  7. andiej

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    Hi all and thank you for your responses. These boards have really helped me and it's so good to talk to other people that Diabetes is also a reality for.

    Especially good to know that i can't expect perfect numbers right now.

    Roberta he is 10 years old (though v.tall he is 5ft2), fortunately i'd taken him to get him checked out as he was v.thirsty and lost over a stone in a couple of months. My grandmother had type 1 and my father has type 2 so I was aware of what to look out for. I had to wait over a week to see the nurse at the gp practice and she wasn't expecting a high reading as she thought he would be feeling poorly by now and he wasn't.

    At the moment he is on Novarapid 3 times a day, dosing 5-6 units depending on readings and size of meal, then levamere (might have spelt that wrong) at night, 10 units. The daytime is starting to come together but he is still getting high readings at night, when he went to bed 2 hrs after dinner last night he was at 10.2 (happy days) by 11 he was upto 14.4, then at 2 am 15.2 then back down to 10.2 at 7.30 this morning. The pediatric diabetes team at our hospital have been incredible and they are phoning us daily with a weekly appointment the dr said now we are back of holiday we can see what his readings do and maybe increase the insulin dose at night.

    For dinner last night he had approx 50 carbs from spaghetti bolognaise and a small piece of chocolate. I'm sure his readings would be lower without the chocolate but at xmas time and having such an awful time of it i don't want diabetes to ruin his relationship with food.
     
  8. nebby3

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    No age is a good one to be dx with D. They all have their own challenges. It sounds like your son is probably in the early stages of puberty too ( based on
    His age and growth spurt). That will mess up numbers too. as someone else said, there are a lot of variables that affect bg and we can only control a few. Growth hormones are a tough one. It sounds like you are a diligent parent. If you read all you can, I am sure you will do as well as one can with this. There are always bad numbers and it is never perfect but it does become more routine and even easier, most of the time. I highly recommend resding Think Like a Pancreas.
     
  9. quiltinmom

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    It sounds like you are doing everything right. Even still, you can expect to feel petty clueless for the next few weeks. It is very much a "trial and error" disease, so you may feel like it's more error at first. But one day you will have someone ask you something about it and you'll suddenly realize just how far you've come, and you will finally feel like you as getting it. It takes time though.

    Just learn what you can but don't dry to digest too much at a time. And most of all, don't blame yourself when things don't go as you expected. There are so many things that affect blood sugars.... Sometimes we do everything right and still see high numbers, other times we forget something and are surprised by numbers staying in range.

    Like I said, it sounds like you are doing everything right. Keep at it. You will get the hang of it before too long. Good luck!
     
  10. Darryl

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    Our experience at first was that lows come on suddenly and can be symptomatic, even with small insulin doses. Keep glucose or juice available at all times and check BG often. In the event of a low I would recommend 10 carbs of liquid glucose or juice (not 15 unless you think there's a lot of insulin still active) then check again in 30 minutes. If you over-eat then BG goes high and then you have to deal with that. We found that this gets to be less of a problem as time goes on, as they become less sensitive to insulin.
     
  11. SarahKelly

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    I know that for the first several months it felt like we couldn't get a handle on anything with Isaac, we were doing the same things then as we were then, but there was just so much to learn and balance along with figuring out what his insulin needs really were. I found that for us writing down as much as I could helped me to feel like I didn't have to keep it all in my head. We checked his BG very often, talked to his endo team frequently and for me as the mother and primary caregiver finding other parents to talk with was key. The book "Think Like a Pancreas" helped me in terms of understanding on a non emotional level. I also felt like getting a Salter Scale to help measure food made a big difference as Isaac was very sensitive to carbs at that pt (1 gram of carbs raised his BG by 15!)
    Not sure if that helps, but I guess the thing is that you're doing great if you're checking his BG often, responding to the number and communicating with your child's diabetes team about any changes that may need to be done.
    Hang in there, it gets to a point where things start to feel more smooth - not perfect, not always just so...but where it isn't eye popping, sleep deprived, emotionally overwhelmed all the time.
     
  12. StacyMM

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    I just want to say that we have a similar diagnosis - my son was diagnosed at 10, just after Chirstmas in 2012. We've just hit a year and it's been difficult. It's a hard age for diagnosis, I think. His friends were getting more freedoms and he was suddenly limited because no one else could take care of him and he wasn't confident about doing his own shots without us around for awhile. He has to have a parent at practices and no one else does. We need to explain the pump and CGM to the refs every game and no one else in the league has to. It's an awkward age where you feel your differences more strongly and he hated that sense of not being 'normal' that came with diabetes. There's growth hormones and puberty and all that fun stuff thrown in and it can be really, really hard on the kids. My only piece of advice is to let him have a place to complain or cry or moan - they are stuck in that in-between age of childhood and growing up and they don't necessarily want to admit that they are scared or overwhelmed. Try to be neutral to numbers in front of him and just talk through what they mean whenever he is interested in listening. Be supportive and be ready for a crazy time. I remind myself that puberty isn't easy for anyone and that we are muddling through it just like every other parent of a tween :)
     
  13. slpmom2

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    So sorry to hear about your son's diagnosis. My daughter was also diagnosed on December 24th, 6 years ago. We don't celebrate Christmas, but Santa comes to visit every child in the hospital so that was the year she got a visit from Santa - made it just a tad easier. :)

    My only advice to you at this point is to keep your expectations low at this point. Just focus on making it through each day (or each hour, even). You will have highs and lows, and that's to be expected. Over time, you'll learn when those are predictable and when they're not (and there will always be some that are not). It helped us to log everything obsessively for a while, so that we could try to spot trends and understand our daughter's responses to insulin, food, activity, emotions, and all of the other factors that can influence her blood sugars. The other thing that made all the difference was getting in touch with other families living with diabetes - both online and in real life - and seeing that life could be normal again. That was huge. So you're in the right place!

    It took about 6 weeks for the clouds to start to clear for me after my daughter's diagnosis, but please believe me - things will get much, much better. If you can just keep a sense of humor and roll with it, then you're ahead of the curve.

    Hang in there!
     

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