Hi Everyone,
This is my first post to this site and I can already tell this is going to be great place for me to learn and share so thank you all in advance!!
My son, Sam, was diagnosed 6 months ago and is 11. After the initial craziness of a new diagnosis, I have to say that we settled into things relatively easily but then summer started. Now Sam's fasting BG is often too high; his meal time BG fluctuates between too high and too low; we have forgotten to give him his insulin numerous times (it's sometimes 2-3 hours before we remember and then he's crazy high); and of course he is more active so more hungry and I am losing my mind trying to keep his BG in range. I'm not even sure if he needs his Lantus added back in or his insulin:carb ratio adjusted. There isn't a consistent BG pattern so I think it is because we are just not getting things under control during the day. Is this common? Do most of you find that monitoring BG over the summer is much harder??
Thanks for your feedback!
My son was diagnosed February 2013. We have learned alot in a few short months. Diabetes does like consistency.
Consistent Carb intake at every meal
Consistent Exercise
Consistent Sleep
If you start with consistent chosen amounts of carbs per each meal that work for him you will find that his BG's are more consistent. Then find out what amounts he will need for exercise.
Add in consistent times for checking BG's and this will help to set up a plan or format or somewhat of a schedule in this busy summer.
It is helping us!
My son is 15.
Also start paying closer attentjon at the ratio of carbs/proteins/fats. proteins and fats will help to stabilize and prolong the ride of stability in BG. Carbs end up being a measure of how much insulin.
And last but not least he may be in honeymoon which will cause altered BG's. His needs of insulin may vary greatly. You may need to be on the back of the Endo as well as the CDE's. We quickly reduced his insulin and found out what worked.
Seems like summer has decreased my son's needs for insulin. For everyone it will be different.
I do not recommend the pump early, because it gives the boy and chance to learn his body and teach him what foods alter his BG's and what foods give him more stability.
So do you have the disease run you or do you run the disease?
Interesting!
Hi! My son Sam was diagnosed just after his 8th birthday and is now 12. Having this online support has been critical to us being able to cope so I hope you find the same!
I have a couple of thoughts. You say that he was diagnosed 6 months ago, and I'm assuming from what you wrote that he is not taking Lantus at the moment? It's very possible that he has been honeymooning and now is coming back into the stage of needing some basal insulin every day. If so that could have a huge effect on your ability to control his blood sugars. Have you talked to his endo about this? I'm surprised someone isn't following you/him to adjust that when necessary.
Secondly, since your son is 11 - you are in for changes pretty much constantly for some years now. First as the honeymoon comes to an end, secondly as he grows he will need more insulin. Basically - growth hormone raises your blood sugar, so you need more insulin, and then the bigger you are usually the more insulin you need - so as he grows he will need more both to handle hormones and size. And then there's puberty that has the unfortunate effect of turning insulin into water . . . (not really but I've heard it feels like that. We haven't done that yet . . .)
Summer does usually make my son's blood sugars higher. I don't know if it's the heat, the growing, or the lack of brain power sucking up sugar that causes the biggest change - but we also experience that.
Lastly - with a growing boy I highly recommend investigating a pump. It's much harder to forget insulin, and it allows for more flexible eating schedule which is critical for my son at least - with sports and events with friends etc.
Have you read Gary Scheiner's "Think Like a Pancreas?" This was the best book I read in the first year after diagnosis to explain how to adjust insulin without constantly having to call the doctor, and to feel like we were slightly in control.
6 months isn't too far into diagnosis. You will feel better about all this as time goes by and you feel more like you understand the disease and how to incorporate it into your life instead of have it rule your life. You can do it!!
-Natasha
As long as you're sure the insulin itself is good — heat can make it spoil quicker, so if you haven't been keeping it refrigerated, that's something to consider — I'd vote "honeymoon" on this one, too. If he hasn't been on Lantus because he was still making his own insulin, and suddenly you see highs despite increased activity levels... that says to me his ability to make his own has pretty much gone by the wayside. I would suggest you talk to his endo about getting him back on Lantus and perhaps also adjusting his carb ratios.
A quick trick for making sure you've got the right amounts — in general, basal insulin should be 40-50% of the total daily insulin given, and bolus insulin should be 50-60% of the total daily insulin given. If you get a sense from your endocrinologist as to what his total daily insulin needs ought to be (based on age & weight), it gives you some guidelines about where to set the doses. So if, for instance, the endo says to you that a kid his age/weight/height should need 30 units a day [this is just an example, I have no idea what a kid his age generally gets], then start out with say 13 units of Lantus and see how well that works, and adjust up or down as needed. And then you might look at a typical day's food/beverage carb count and set up the carb ratios so that you wind up giving 15-17 U of bolus insulin over a typical day.
Changes in weather do sometimes alter insulin needs, but with the onset of summer you find they typically need *less*, not more, because they're more active. There are always exceptions — some folks go high in hot weather — but that would also suggest maybe reinstating the Lantus is a good idea.
Consistency does help somewhat, and I would encourage you to try to establish habits of consistency if only so you don't accidentally skip doses — but over time you'll learn to plan for the times you can't have consistency. I agree with the recommendation about "Think Like a Pancreas" but I am not sure I agree with the recommendation about the pump. With a little guy like my son, who's had diabetes since he was in diapers and has worn a pump for most of his life, there's really no issue about wearing a pump... but your son is on the verge of adolescence, and kids can find it embarrassing and uncomfortable to have something so different than other kids. If he can be brought to see it as a "bionic pancreas" with an enhanced cool factor, that would probably work, and might help prevent forgotten doses (because pushing buttons on a computer is way more interesting than using a needle). But if he thinks it's going to make him stand out among his peers at a time when he's getting into that awkward stage of needing to know where he fits in and separating from his parents, that could make him *less* inclined to use it for giving boluses. Not to mention the fact that pump users have an intrinsic higher risk of DKA due to pump failures, and at least using Lantus, that's not a concern. So it really depends on your son's mindset about the whole thing, whether a pump is a better choice. It IS easier to manage fluctuations with a pump, I'll agree with that one... but easier for a parent isn't necessarily better for a kid.
Thank you. Yes, Sam has been in the honeymoon period (his Lantus was slowly reduced from 6 U to zero and his insulin:carb ratio changed from 1:20 to 1:15) so I think I need to call the CDE again (our next appointment with the Endo is not until August). Honestly, I think things were going so well, that we were not being quite as consistent as we should. 'Consistency' is going to become my new mantra!!
Hi Natasha, Thanks for your feedback. We are in the process of getting a pump approved which I think we allow for more consistency. It's good to know that we are likely to experience many changes as my son hits puberty. Also, I don't think I was thinking about this logically!! Since we have only recently taken him off Lantus and adjusted his insulin:carb ratio, I presumed this would continue for months but in reading your comments and others, I realize now that Sam's insulin needs may change frequently and we just need to embrace this and not be worried by it!!
Laura
Things where changing for us so rapidly after diagnosis that I called the Endo's office almost every day! At least weekly!
I found out immediately that the CDE's direction was different from the Endo's. So keep that in mind too.
Wow - so much to think about. I am already loving this group!! I am getting a lot of great information to think about, as well as some 'counseling' at the same time :-)
Sam is really looking forward to a pump. He's a big 'techie' and thankfully is not embarrassed about wearing a pod (he's opted for the Omnipod). It does seem like things will be easier to manage with a pump. (It's hard giving 0.5 units with a pen to cover snacks as I am not convinced all of it goes in). I am going to complete his BG log and get it ready to send to his CDE.
Laura
This sight has been helpful. But I have also found that people can be very strong in their opinions. So take in what information you may. Also find some Facebook groups that may interest you.
My Sam also wears the Omnipod and it made a huge difference for him. Please let me know if you have any questions - have you already joined the omnipod group on here too?
welcome to tu, it looks like you have already gotten some excellent advice. it definitely sounds like sam is honeymooning and it may be a tough time of transition, how is sam doing with all of this? is he interested in a pump, there is a range of opinions on when to start but I would have sam be the biggest influence on this with things still really in flux it might be better to wait a bit, my son was diag about the same age we waited 2 years to pump he was not interested at all until he saw a utube video of the omnipod. there are so many new variables with pumping that I think it is good to be pretty stable and have all the basics under your belt first unless sam is really interested. sounds like adding in some lantus is a good idea, we always kept some lantus even when honeymooning again so many ways to go about things....with diabetes like anything else there are times that you sort of coast and then there are times when well you know!! the best approach is to take it one day at a time and remain super positive and supportive with sam, at this age I would handle most things for him D related so he can just be a kid while you are always teaching in a need to know kind of way without being to preachy, he just so wants to be a kid. I would suggest keeping in close contact with his endo team at this point because things are so in flux once things settle out more you will practically have an M.D. after your name. hang in there and please ask away with any questions we all have been there and lets face it unless you have walked this walk there is no way of understanding all that is involved. best wishes to you both, enjoy the summer and this special time with sam, D complicates things but it will never take away his special spirit. in the end it may strengthen your bond and make him a more resilient, empathetic person. many blessings, amy
Then you've got the cool factor already covered. That's half the battle right there!
Oh! another thing you'll need to know is, growth spurts can be a source of highs. Growth hormone makes kids insulin resistant. So if he starts going into the typical behaviors of a kid undergoing a growth spurt (sleeps a lot, eats a lot, complains of pain in his shins) you'll want to keep an eye out for a pattern of high BGs and adjust his basal accordingly.
If you see signs he's going through a growth spurt now, he may not necessarily be out of honeymoon, he may just be a trifle insulin resistant... but adding Lantus (now) or increasing his basal (once he's on a pump) would help there, too.
