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Suzamom

Questions about type 1.5 in a 14 year old

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Suzamom

Experienced mom with a 17 yo son (dx at 9) pumping for 2 years.

Struggling with new diagnosis for 14 yo son (developmentally disabled).

3 Islet antibodies present, son is overweight but eats balanced diet. Type 1.5....started 20 u of Levemir to stabilize & support pancreas. Experienced lows at 8-10 hrs when Levemir peaked. Reduced to 15 u. Good for 10 days (diet the same) and then lows at peak again. Switched to 17 u of Tresiba (less peaking....longer control - that's the claim anyway.....we'll see).

 

So here are bs since starting Tresiba....

 

Day 1 - br 84, l 92, d 76, bedtime 137, 2 am 117.

Day 2 - br 79, l 92, d 147, bt 161, 2 am 192

day 3 - br 162, l 205, after school 241, d 162, bt 156

day 4 - br 118

 

This up and down is EXACTLY what we saw on Levemir (plus the peaking insulin lows).

 

 

We caught his issues super early. Routine bw + educated household = early diagnosis

 

Everyone is assuming this craziness is the death throes of his pancreas. Seems to make sense but this kid has other health issues. I thought resistance affiliated with illness was longer lasting or at least that's my experience. Could this be resistance that only lasts hrs?

 

Lastly, anyone have experience with taking digestive enzyme supplements? Does it effect bg or resistance?

 

As always, thanks so much!!

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JohnSchroeder

Is he not taking a bolus insulin at all?  The ups and downs throughout the day are probably due more to eating and bolus than they are to his basal insulin.

 

Assuming he is fasting overnight, his readings are going from:

117 to 79, okay, maybe a bit of a downward slope there

192 to 162... again, okay... bit downward

156 to 118.... again, bit of a downward slope.

 

The basal insulin (tresiba) should keep him even when fasting.  It looks to me like his tresiba dosage might be a little bit higher than he needs. 

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Suzamom

We (parents and Endo) are worried about lows so presently, no bolus. He doesn't react quickly, due to developmental delays, and doesn't react to lows at all. Trying to manage and extend honeymoon using basal and whatever pancreas is able to supply. Having to treat multi issues creates more issues....ugh!! I'd love to just put him on a pump and cgm but interestingly, we were having at least 1 captured on meter low (55 bg) per month before insulin was ever introduced. Things that make you go hmmmmmm! Because of his lack of awareness, we are not sure if lows were occurring more often.

 

Also, he's taking seizure meds that have a profound effect on his liver. This complicates everything!! For no rhyme or reason, out of nowhere, we get a dawn phenomenon liver dump and he wakes > 200 bg.....this too, can happen sporadically.

 

Somewhere, some researcher wants to look at this boy's organs. He's a very unique and much loved kid!! He teaches me that I'm not as smart as I had thought....lol!!

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Suzamom

JohnSchroeder,

 

I think his pancreas is working in fits & starts or his body handles Tresiba inefficiently. I was thinking like you...a tad too much Tresiba...BUT these numbers might indicate it is spot on or perhaps he needs 1 or 2 more units.

 

Bg before dinner yesterday was 162 (prior meal was 6.5 hrs earlier) [17 units of Tresiba given 12 hrs earlier]

10 carbs at mealtime

2 hrs post was 156 bg

Bg at breakfast today (12 + hrs fasting) 118

 

I appreciate any thoughts you might have. I also understand if you run away screaming....that's craaaazeeeee. Lol

 

Thanks!

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DanG

PiggyBack to John Schroeder - perhaps the high numbers are liver reaction to low blood sugar?  Perhaps lower Tresiba basal might be considered? i.e. somehow see if liver is responding to low blood sugar.  How to make that determination is razor edge tough since he is developmentally disabled and not responsive ahead of low blood sugar.  If you experiment, be careful.

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JohnSchroeder

I honestly don't see anything strange about those numbers.  Tresiba (or levimir) is not designed to prevent or correct for spikes.  Without any bolus insulin it looks like his pancreas may be doing a bit of work to lower the highs. like I said earlier.. the Tresiba is dialed a bit too high and is constantly giving his levels a downward slope.

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Suzamom

Ahhhh....thank you both. I tend to assume that his pancreas is handling (as best it can) bolus. Had not considered Tresiba was doing the work (should have, just did not).

 

We'll see what one less unit does and go from there. Hoping for flatter blood sugars meal to meal.

 

Thanks very much!

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