Worried parent ...please help!

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24
Type of diabetes
Parent
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Pump
Hi all, my 10 year old daughter was diagnosed with type1 diabetes three years ago and she has been on the pump for the last year and a half....for the last two years her basal or background insulin moved from 4 units to 5 to 7.9 until a couple of weeks ago...over the last two weeks her sugar levels have been all over the place....and her basal insulin requirements have been increased to more than a 100% to 16.5 units... we are still trying to keep thesugar levels in control at times...our doc said it is probably a growth spurt but I'm extremely anxious to check whether this level of increase or dosage is normal for a 10 year old????...any advice or light you can throw on this will be deeplyappreciated....from a sleeplessparent! X
 

Natalie1974

Well-Known Member
Messages
871
Type of diabetes
Type 1
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Insulin
Hi @anxious parent
Sorry to hear you're having a bad time. The fact that your daughters basal insulin requirements have increased so dramatically is possibly due to a few things...as she is three years diagnosed it could be that she is coming out of her honeymoon period which can last for varying amounts of time...from a few months to a few years. It could also be as her doctor said due to a growth spurt...hormones have can have a crazy effect on blood sugars...as do a great number of other things...from stress to the weather.
Unfortunately as I was diagnosed in my 20's I can't really advise whether this is normal dosage for a 10 year old...although every individuals needs can vary so greatly it would be impossible to advise a typical dosage.
I will tag a moderator @azure who can move your post to a better place in order that you get a few more responses.
Hope this helps to put your mind at rest.
 

shews

Active Member
Messages
27
I was 10 when I was diagnosed. This was 25 years ago back in the days of human mixtard insulin, but I remember my dose at the beginning was 10 units per day. this increased steadily to 40 units from 11-17 years old which was put down to hormones and growth. It reduced to approx 35 when I went onto a basal/bolus routine and then onto a pump but I think the number of units tends to be equal. My overall doses plateaued as my growth did.

Either way, I was under the impression that it was normal to see increases with growth/ weight increase/ hormones. The body is chagning so much at this age so I think you have to expect constant changes to be made to her overall doses.

If it continues to increase exponetially however and you are worried then speak to your pump nurse/dietician.
 
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CarbsRok

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I would guess hormones and growth spurt are the culprit so worry not especially if there's no sign of illness. Are you 100% sure extra carbs are not being eaten and not bloused for?
 
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24
Type of diabetes
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Thank you Natalie, Shew and Carbs rok!

Knowing your personal experiences, Shew in particular, has thrown some light on our situation. We were expecting a gradual increase in her basal dose due to the various factors but the sudden change to more than a100% seemed like it happened overnight.

In response to your question Carbroks...she is very mature and takes her treatment quite seriously...she's made it easier for us..so I don't think she would be consuming anything that's unaccounted for.

Thanks once again all!!!
 
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azure

Expert
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Hi all, my 10 year old daughter was diagnosed with type1 diabetes three years ago and she has been on the pump for the last year and a half....for the last two years her basal or background insulin moved from 4 units to 5 to 7.9 until a couple of weeks ago...over the last two weeks her sugar levels have been all over the place....and her basal insulin requirements have been increased to more than a 100% to 16.5 units... we are still trying to keep thesugar levels in control at times...our doc said it is probably a growth spurt but I'm extremely anxious to check whether this level of increase or dosage is normal for a 10 year old????...any advice or light you can throw on this will be deeplyappreciated....from a sleeplessparent! X

I suspect hormones too. Yes, it does seem a large increase but I remember a sudden growth and development around the age of 10 or 11 (I wasn't diabetic then) so a special growth spurt would make sense.

I don't know if insulin requirements are affected by periods starting, but, again, maybe her body is gearing up for that or a general puberty growth. I know that must be worrying, but if it is that, it shows all's going well with her growth and development.

The only other thing to ask is if her sites are ok. Is it possible she's using somewhere where her absorption has become poor? That happened to me once and my sugars went high over the course of a couple of weeks. I had been using my tummy for years, then it suddenly didn't work, but I didnt realise that's what it was so fought highs for weeks until it occurred to me to move to a different body area. That made everything go back to normal.

Also, if your daugher has changed shape at all then perhaps her cannulas may need a rethink? Just another possibility. I would think that was less likely but it's worth a mention.

Finally, have you changed to a fresh insulin vial/cartridge just in case the insulin has lost effectiveness?
 
Messages
24
Type of diabetes
Parent
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Pump
Thanks Azure! I didn't think about the site being less effective...it is definitely worth a shot.
 

RuthW

Well-Known Member
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1,158
Type of diabetes
Type 1
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I think that is quite a high basal rate for a 10 year old. It's more than mine and I weigh 65 kilos and am 54 years old.

I was (once) a 10-year-old diabetic so one thing I suggest is actually talking to her about whether she is snacking in secret. I used to do that all the time at that age (with the collaboration of my sisters!) I don't mean that you should tell her off, but as well as a physical growth spurt, at that age you start with the 'why me?' And with wanting to be 'the same' as everyone else. So it may be good to open the channel of communications on that one and work out strategies where she can sometimes snack with friends. You'd be amazed how 'going to the (corner/sweet) shop is a 'bonding' activity at that age. Also her friends may be carrying sweets with them and offering them to her. I remember having zero will power at all when I was that age. But I so wanted to please my parents that I always played dumb when blood sugars were out of whack.

And, of course it may JUST be the onset of puberty, or it may be a bit of both. To really find out, you need to keep her under your eyes for about 3 days without a break and see what her basal rate does then.


Sent from my iPhone using DCUK Forum mobile app
 
Messages
24
Type of diabetes
Parent
Treatment type
Pump
Hi Ruth,

Your Basal rate is less than my daughter's is it???...oh dear!! That is worrying because her levels are on a rollercoaster more in the evening/ night and we are all at home ...so there is no way she can sneak anything.

I'm trying out different things...blocks of different basal rates, giving an extra unit or so to match her pattern of increase in the night...hopefully things will settle down into a routine as before.
 

azure

Expert
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Type of diabetes
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Hi Ruth,

Your Basal rate is less than my daughter's is it???...oh dear!! That is worrying because her levels are on a rollercoaster more in the evening/ night and we are all at home ...so there is no way she can sneak anything.

I'm trying out different things...blocks of different basal rates, giving an extra unit or so to match her pattern of increase in the night...hopefully things will settle down into a routine as before.

It's more than my basal too, but don't panic about that. Just bear it in mind and see if, for example, her evening meal ratio needs changing. You say her sugars go up in the evening. Can you give us an idea of the kind of thing they do? Does the rise start after eating and stay raised, or is everything ok but it creeps up at night?
 
Messages
24
Type of diabetes
Parent
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Pump
It's more than my basal too, but don't panic about that. Just bear it in mind and see if, for example, her evening meal ratio needs changing. You say her sugars go up in the evening. Can you give us an idea of the kind of thing they do? Does the rise start after eating and stay raised, or is everything ok but it creeps up at night?
Hi Azure,

Most of the time , her bedtime is between 6-10 ...for example ....yesterday at dinner time , 8 pm, she was hypo...2.3...so she had her fast carbs and then followed by her meal...then around bedtime , which was 10pm she was 9.2.......at 11 she was 12.4...I gave correction and at 1 am she was 16.5...at this point I put a temporary basal rate and gave an additional correction...this time , her hourly bg showed that it was falling and her breakfast time bg was 6...

I am going to put a temporary basal rate tonight and am hoping this will check the rise.

Fingers crossed!:(
 

azure

Expert
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9,780
Type of diabetes
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Could she eat her dinner earlier? I find that if I eat after 7pm my blood sugar can stay high and it messes up my nighttime results. I generally aim for around 6pm. I find that makes a big difference to me. Would that be something you could try? If she eats earlier, it's also easier to monitor her BS and any corrections or hypo treatments. Eg eat at 6, test at 8, a bit low so have a small hypo treatment, and then by bedtime everything should be ok for bed and settling down. Eating at 8pm means things are still going on BS wise during the night.

I know you may have to,eat at that time, but I really think that if an earlier dinner was possible, that may help.
 

himtoo

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why can't everyone get on........
hi there
I would completely agree with @azure about meal times.

if we think about it logically , going to bed before a bolus dose of insulin has finished working is sort of asking for an issue in the night because it is harder to be sure if the background basal rate is correct , or if indeed the bolus dose ( and therefore carb ratio ) are correct.

i test my BG as follows

first thing upon waking ( usually 6:45 - 7AM )
before brekkie ( 8:30- 9:30am )
2 hours post brekkie
before lunch ( 1pm )
2 hours post lunch
before evening meal ( 6:30 - 7pm )
2 hours post evening meal
before bed ( 11:00 - 11:30 )

i am in this sort of routine most days -- ok there are exceptions for example -- going out for a meal
but i try never to go to bed until my bolus dose is finished working

at three years diagnosed and with your daughters age, end of honeymoon , hormones ,
( and of course the fact that Diabetes doesn't always behave and play nice )
her insulin requirements will be changing

what sort of total daily dose ( basal and bolus together ) is she on ?
knowing this gives a quick idea of basal / bolus ratio

I am thinking as well that pretty much constant communication with your daughters DSN would be a good thing right now as she will see things in the patterns ( DSN's are usually experts in reading patterns as they sort of do it for a living )
 
Messages
24
Type of diabetes
Parent
Treatment type
Pump
hi there
I would completely agree with @azure about meal times.

if we think about it logically , going to bed before a bolus dose of insulin has finished working is sort of asking for an issue in the night because it is harder to be sure if the background basal rate is correct , or if indeed the bolus dose ( and therefore carb ratio ) are correct.

i test my BG as follows

first thing upon waking ( usually 6:45 - 7AM )
before brekkie ( 8:30- 9:30am )
2 hours post brekkie
before lunch ( 1pm )
2 hours post lunch
before evening meal ( 6:30 - 7pm )
2 hours post evening meal
before bed ( 11:00 - 11:30 )

i am in this sort of routine most days -- ok there are exceptions for example -- going out for a meal
but i try never to go to bed until my bolus dose is finished working

at three years diagnosed and with your daughters age, end of honeymoon , hormones ,
( and of course the fact that Diabetes doesn't always behave and play nice )
her insulin requirements will be changing

what sort of total daily dose ( basal and bolus together ) is she on ?
knowing this gives a quick idea of basal / bolus ratio

I am thinking as well that pretty much constant communication with your daughters DSN would be a good thing right now as she will see things in the patterns ( DSN's are usually experts in reading patterns as they sort of do it for a living )

Hi,

Thanks for inputs. I'll definitely try and keep the dinner early. Last night, temp basal rate seemed to work and kept her bg at a decent level....Also she's had a good day with a few hypos ( which suddenly feels like a good thing after all the hypers )...As for her TDD...earlier before things got crazy, she had about 20-22 units with about 7 units as basal.

But now itz about 35, with about 15-16 units basal :(((...hopefully things will settle...
 

himtoo

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why can't everyone get on........
thanks for that @anxious parent
the thing is ............. the TDD is still running at the correct sort of ratio
16 to 35 is 45% basal and obviously 55% bolus in a typical normal day

one thing we know for sure -- D does not behave and stay the same all the time
( even though we all wish it would )

you know you got a truly dedicated team here -- so keep posting !!!!!!!
 
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Messages
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thanks for that @anxious parent
the thing is ............. the TDD is still running at the correct sort of ratio
16 to 35 is 45% basal and obviously 55% bolus in a typical normal day

one thing we know for sure -- D does not behave and stay the same all the time
( even though we all wish it would )

you know you got a truly dedicated team here -- so keep posting !!!!!!!

Thanks for that!!! It's good to hear reassuring words from people with experience!
 

newtonj

Member
Messages
7
Type of diabetes
Type 1
Treatment type
Pump
Hello there!
I was diagnosed with Type 1 @ age 9, 18 years ago, and started off with only 3 units per day! I stayed on a low dosage for a while, and I remember being told I was in the 'honeymoon' period, where my body was still making a lot of its own insulin.

Looking back, I often used to eat things I shouldn't have, and lived with high blood sugar readings and used to have such terrible control, if any at all. But then the care back then wasn't what it is now at all. There was no such thing as carb counting and I didn't have a clue what I was doing.

The diabetes teams are so much more clued up now than they used to be, and I definitely agree that the increase needed for her basal, could be due to growth spurts. If I put on weight, I always need more basal. And If I lose weight, I always need less. So I suppose it makes sense!

I really do admire you as a mum looking after a diabetic child, I know I put my mum through hell with worry, and I admire anyone who's doing the same for their child now xxx Keep it up, you're a life saver :)
 
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Messages
24
Type of diabetes
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Pump
Hello there!
I was diagnosed with Type 1 @ age 9, 18 years ago, and started off with only 3 units per day! I stayed on a low dosage for a while, and I remember being told I was in the 'honeymoon' period, where my body was still making a lot of its own insulin.

Looking back, I often used to eat things I shouldn't have, and lived with high blood sugar readings and used to have such terrible control, if any at all. But then the care back then wasn't what it is now at all. There was no such thing as carb counting and I didn't have a clue what I was doing.

The diabetes teams are so much more clued up now than they used to be, and I definitely agree that the increase needed for her basal, could be due to growth spurts. If I put on weight, I always need more basal. And If I lose weight, I always need less. So I suppose it makes sense!

I really do admire you as a mum looking after a diabetic child, I know I put my mum through hell with worry, and I admire anyone who's doing the same for their child now xxx Keep it up, you're a life saver :)

Hi newton,

Thanks for the kind words and inputs!...I think being a diabetic child is really tough...God knows that I've eaten sweeties to last two lifetimes and itz unfair that children as young as 2-3 even have to have restrictions ...and am sure the thought that it should have come to us the moms and not the child has crossed every mothers mind.... I guess we do what we do because our happiness is bound to that of our kids :)....so your mom must be really happy and proud now!! :)