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Stressed out so hard to manage need advice

J

jake667

Member
Messages
19
Type of diabetes
Parent
Treatment type
I do not have diabetes
It's been awhile since I have posted . It's been alittle over a year since my daughter was dio type 1 and it's been a rough road . She does well not on a pump has a dex 5 witch helps a lot she's Gona be 14 in nov and the teen years are in full force to say the least she's a 4.0 student smart as can be.not sports active or anything but does spend time with her close friends a lot giggling and acting like teen girls .. she hates her dexcom sensor insertions with a passion . A few weeks ago we findly had a melt down . Iv been waiting for it . And she's right it's not fair and I understand through her tears saying I don't want this anymore . I'd take it from her if I could in heart beat . She blood augers are very hard to manage she eats very well even before she was dio she wasn't a sweets person she's not over weight in fact she's finly back to a healthy weight after all she lost before her dio . She's on a 1 unit to 10 ratio . And we adjust up and down that depending on her activity and is on 35 units long . And again adjusted up or down depending on her activity weekends we ussuly go up since she isn't as active . The biggest issue is it takes a long time for her insulin to go active after she takes it making after meal spikes way to common . We try are best to premeal he doses but lunch at school is impossible to get 20 mins before and mornings sometimes are just as hard . But re onset of her insulin is so delayed she would have to dose 1 + hours before to stop her spikes . I can watch her cgm graph say she's 90 premeal she's Gona have 30 carbs we dose 10 to 15 mins before I see a slight drop at the 20 min mark then she skyrockets to the mid 200s within the next hour and will stay there till 2 hours after the drop back down to close to premeal levels. If we up the units ratio she will go hypo at 3 hours to 4 after meal it's very frustrating for all of us . If she's under 80 premeal and we dose 10 or more mins before she eats she will drop to the low 60s or 50s . We have tried to stretch out to 30 mins plus premeal but with the same results , she still spikes . The worst is if she comes in hi premeals .. if she's over 150 she will top out 300 or more regardless of how long we wait . And going to a higher unit ratio will only make her hypo after 3 to 4 hours ... of course the docs only sugustions are eat even less carbs or go on the pump . Iv been less then impressed with his lack of intrest in any other type of management he is not a ped endro . I'm going to get a refural for one . Her a1c is not great 8.5 to 8.7 but it has been coming down . But with these aftermeal spikes I'm afraid we can't get it down more . I'm looking for any advice anyone would have thank you and sorry for the long winded read
 

Hi there Jake667 - I'm not a T1, so wouldn't like to comment too much on your daughter's blood glucose struggles, except to say it looks like some tweaks might work well for her.

Have you spoken with her doctors or nurses? They would be able to look at your daughter's CGM traces and listen to your concerns in proper detail.

Good luck with it all.
 
Hi @jake667 .
Sorry to hear of your daughters current struggles. Perhaps if you could tell us what insulin she is currently using may help.
Different insulins are available. Fiasp, a new insulin, is seen as having a rapid action time.
Also an idea of your daughters diet may help. Certain foods, although healthy can cause very large spikes. The addition of certain foods/ fats can seriously effect absorption rates hence reducing spikes.
Sorry can't offer much more.
 
Yeah we had the hard learning curve of different foods like fatty foods and slow digesting and pastas . Her meals are ussuly very constant breakfest is ussuly 2 scrabble eggs a small yorgart one peice of light bread and a Turkey sausage . Just under 30 carbs lunch is a yogurt small amount of fruit and a meat sandwitch with light bread again . Ussuly 40 to 60 carbs . Supper Varys of course but she's so scared of her spikes she self limits what she eats greatly .. even if I push and say we need to try different things so u learn how they effect u she rarely will .. feel so bad for her . She refuses to eat any pasta now since it's so hard to predict As for her insulin she is now on lantus . Long lasting and novolog fast she was on humalog but that changed because of are insurance . And their was no change in her onset times .atleast not a noticeable one. It's so confusing the amount of time it takes for her insulin to bring her down post meal I have a few friends who are long time type 1s one maintains a 5.5 a1c witch is amazing and he's not on a pump .they both just say wow at how long it takes her to drop both say if they waited much longer then 15 min after doseing they would be hypo and they rarely spike more then 160 to 170 . Now granted they are both in there 30s almost 40 . And she's a 13 year old girl lol . I just want to keep her safe and these spikes are not good . Or since she's a kid am I freaking out more then I need to ?
 
I may have missed reading it but have you raised the issue with her medical team?
 
Yes . We have . The the basic answer we get is she needs a pump .. and I totally get the adjustability that a pump can offer . But I feel as though I'm missing something with management with injections .
 
To me her long acting insulin dose seems quite high relative to her short acting.

I have more or less a 50/50 split. What are her night time blood sugars like? What time of day does she take the long acting?

I remember, a few years ago, when I was still taking Lantus, being told by the doctor at a hospital appointment, that the normal dose was about 20 units, but I felt that that was too unstable, and that very minor changes in my meal time insulin doses would have a massive impact on my blood sugar.

So I thought about it, and reduced the long acting, to a level where I felt more stable, and took more fast acting at meal times.

Recently I switched to Levemir, twice a day, and so far it's beautifully stable.

This is just a thought, I may well be completely wrong, and getting the long acting basal insulin right is a bit of a pain, it just seems quite high relative to the fast acting.
 
Basically I adjust her long to the point that she does not rise through the night .or slightly drop . I prefer her to go to bed at the 160 ish mark and wake up around low 100s . I know a lot of people split their long lasting . I guess I really don't understand actully why . She takes hers in the am . Iv noticed her bs is a lot harder to control while she has her monthly.. oh she would punch me if she heard me say that lol but Iv noticed that trend .
 

There's a convincing argument for splitting Levemir, because of the shape of it's action curve. It takes a while to peak, and then tapers off very slowly, so taking a second dose 12 hours later, while it's tapering off, creates a smoother coverage. But it depends which one she's taking. Tresiba, and Toujeo are effective as once a day insulins because they are very long acting, but Levemir, and to some extent Lantus, don't last a full 24 hours. You can iron out the peaks and troughs a bit more by splitting, because neither of those two have a completely smooth curve, and splitting can make them steadier through the day, it also gives you a bit more flexibility.

My thinking is that if she was taking a bit less basal during the day you might be able to increase the fast acting at meals, and reduce the spike, without her ending up with a hypo.

It must be very hard trying to work out the insulin needed for someone else, especially when it's your own daughter. I can experiment with myself, because I'm used to it, but she hasn't had it for long, and you haven't been doing this for long. But it might be worth talking to the doctor about it.

You can do a basal test, I'm not sure I'd be keen on persuading a 14 year old to miss a meal, though, and it's quite complicated.

That might help, though, maybe.
 
She's very hard to convince to do anything other then what her doc recommends she acts as though it's set in stone lol . I'd love it if she was more engaging with her treatments .. but she's a 13 year old girl . Man when I was 13 it's girls rc cars and motorcycles I couldn't imagin haveing a 24 7 life long condition . So I really do try to cut her some slack . A friend came over last night to show her his pump . I was shocked at how small the tube needle is and the sensor too compared to the dexcom inserstion needle . No wonder she crys . It's like a Iv needle and it's not angled . What ****.. and such a better insert device. That made her feel tons better. I worry so greatly that I'm not doing things right and unfortionaly that insecurity is felt by her .some day she will take control of it and tell me to back off she's got this . But until then I'll be the annoying dad . Is a 1 unit to 10 carbs a higher dose . I know it varys greatly from person to person but how long on avarage should a person return to premeal bs numbers
 

1:10 ratio is pretty standard. My fast acting ratio is 1:10. Though about a year ago I decide to try eating just 20 or 30 grams per meal, whereas normally it's about 40 or 50g, and weirdly my insulin ratio went up when I reduced the amount of carbs. I don't really know why, as I'm not a doctor, but because she's eating quite low carbs, a slightly higher ratio might work.

But if she only wants to follow doctors instructions there isn't much you can do, she's exactly the right age for no longer automatically believing what parents say. So, yes, you probably do just have to let her work it out for herself.
 
lol yeah she turned 13 and suddenly I wasn't as smart as i was before ....teenagers
 
jake667 said:
She's very hard to convince to do anything other then what her doc recommends she acts as though it's set in stone lol .
Click to expand...

Jake, you mentioned she's kitted out with dexcom.

There's a couple of good books which helped me a lot when I started out with cgm.They're both on kindle.

Sugar Surfing by Stephen Ponder.

Beyond Fingersticks by William Lee Dubois.

Both of the authors are type 1, SP is also an endo, WLD is a diabetes educator. Both have been using cgm from the early days, so they know what they're talking about.

I'm wondering whether it would be worth saying to your kid, here, have a look at these books, these guys have been using dexcom type stuff from the start and have figured out ways of using it to make their own decisions, safely, without relying on docs.

It might nudge her towards relying less on what docs set in stone and say, ok, got cgm, can read what it's telling me, will do this.

A word of warning, though, before you suggest she reads WLD's book - he swears a lot!
 
I will certainly look them up. She loves to read so hopefully she will show intrest
 
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