End of honeymoon? Celiac? Just typical changing T1D? HELP!

Type 1 and LADA
1

Sorry if it gets lengthy. I'm at a loss of what to do lately.

My Naomi started pumping in late May and control was great all summer. We made a few changes once school started and then again in late November (after soccer 3x a week went away her insulin needs increased). We were cruizin' along and now it's in the toilet (IMO). She's on a pump and has not been diagnosed w/ celiac (as of blood draw 10 months ago). T1D DX was 10/28/10, so maybe this is the end of the honeymoon..but I don't know. Her bg is all over the board. At night she is pretty much stable mabel so long as she doesn't have a snack just before bed. If she eats carbs before bed she usually ends up needing a correction around 11pm or 12am. Her basal rate decreases at 12am because sometimes she will drop 50+ on her own (without any corrections) between 2am-6am, so doesn't that mean she must still be producing some insulin on her own? Since her basal change in NOV she has needed fewer late night corrections and as long as she's 130+ at 2am I don't recheck her again until before breakfast - sometimes she will stay totally stable and others it will drop. The main issue we are having is major spikes that just won't budge unless I have her go without any processed carbs (bread, crackers, etc..). This is what has been happening lately. Breakfast bg say 104, two hours later 260, three hours later 180. If I give her applesauce, cheese and a correction she'll be back to 120's by 12:30am, BUT if I give crackers and cheese she'll be back at 260+ in no time so then with lunch at 12:30am a bg of 202 with a 55 carb lunch (bread, meat, cheese, orange, yogurt) she was 360 in the afternoon. I had her go carb free until her sugars came down. At dinner at 5:45pm she was back to 115, had chicken, apples and an orange w/ a standard dinner bolus...then no pump for an hour while doing gymnastics...put pump back on she was 114 at 8:30pm and held great at that through until her basal dropped at 12am when she bumped up a bit to 125 but held fine all night long. Normally that type of dinner pre-gymnastics would have possibly attributed to a low during her exercise. Naomi has never had a major I:C ratio difference for bread vs things like applesauce or yogurt, it's been pretty much all the same but it seems like now regardless of the item (whole wheat bread, white bagel thin, homestyle frozen waffle) that it sends her to the moon. Naomi complains her tummy hurts almost every morning. Sadly this has been happening in phases with the tummy - it happened last year as well so the endo screened her blood again just months after diagnosis and found nothing.

Any ideas?

2

Ok first off because this is your daughter I would suggest contacting her Endocrinologist and the dietician.
But cheese is a fat and fats delay the absorbion of carbs and sugars. That's why when I eat pizza I'm low for an hour and then spike much later.
The lunch might have too much in it, maybe drop the orange or yougurt and is the yougurt low sugar? They are sneaky things and some can be loaded with sugars.
I highly recommend a dietician - they are so important. I consider them equally important as my Endo.

Also as a former child who has been diabetic since the age of 5 way back when we did one needle a day I want you to know that things won't always be perfect. Controlling blood sugars is like trying to train a fruit fly. Very difficult but not impossible.

Talk to the endo perhaps her dose needs to be adjusted. I"m Canadian so the numbers you have put up don't mean anything to me because we work with mmol (good range is 4-7) I'm surprised the US diabetics haven't gone to the mmol system it's much easier. Anyway back on topic. We all "TRY" to stay within the normal range but anything can make it vary, being run down, stress, a sunny day or rainy day and that's not counting in the oddities that food can throw our way.

As for the tummy pain - is it the pump site? is it something else? My cousin complained about tummy pain to avoid going to school.

One piece of advice is brown breads and pasta - bagels are too big and too loaded with carbs. I never eat them. But again go see a dietician to get real advice.

Post any time you are frustrated and go on and on as long as you want. You are a great mom, you are doing things right. Trust your gut always. Doctors only know medicine - you know your daughter inside and out. Trust yourself.

Big Hugs, She will be fine. I made it through and became an adult who runs marathons, triathlons, traveled the world and was always encourage to do anything by my mom and dad. Diabetes is manageable - we manage it - ups downs and all the bits that come with it.
More Hugs :)

3

I'm from Italy and your numbers mean a lot to me ;-) .
My daughter is 3 years old, db1 for 2 years now and diagnosed celiac since last november,
We are since then on a gluten free diet, but till now we didn't notice differences in her BG.
I think your problems are due to the end of her honeymoon, but you should repeat the celiac blood test now, after a year passed.
Has she enough Iga for anti-Ttga to be meaningfull ?
There's not only celiac desease, perhaps her pain is due to something else (appendicitis ?), to check ?

We are on MDI, and at night she needs very low basal, otherwise between 3am and 7am she goes down 50 mg/dl: neither she has any beta cell ...

Give her "simple" bread: no crackers et simila (now no more bread ...).
We use home made yogurt and add fruit (to avoid added sugar, usually in variable quantities).
But first of all check her basal by fasting for periods during the day.
You are on pump and can do this. Basal is first thing and foremost important.

Our BGs are roller coaster too, with periods of good control and fast changes in parameters. It's not good, but not an easy task for anyone.
Keep going , cheers.

4

Lunch today gluten and dairy free, prelunch bg of 114 and 3hrs later 145.

5

Don't do that.
If she is celiac, it's not a gluten free meal that changes her bgs or CHO absorbtion. The damage is done and it takes months to repair (that's why we hope to get better stability in some other month).
If you go gluten free now you will never see in her blood work if she is positive because she has not or because of her diet.

If you fear that is the cause, you could go for an endoscopy check (unconfortable but definitive) (link)

6

ah, so sorry to hear this...you're such a good mom, i must say. you're (or she's) about on the same Dx timeline as I am, my honeymoon has indeed ended and my insulin needs, especially my bolus has increased 300%, i'm using 3x's the amount of insulin I used when diagnosed, it's crazy. I can't keep up with my numbers and dose changes either. It's, unfortunately, part of this disease. Remaining beta cells just dying off until they're all gone. :(

It does sound like her basal is correct because she's coming back down to a good number. I do the exact same thing, I drop every morning at around 4am and continue to drop for the next few hours, no matter what amount I use, so i've had to split up and drop my AM basal, although I need more too..i don't know. I'm still on MDI, waiting to get on a pump. I wake up every night, middle of the night to check too. It's crazy.

It's good she's on a pump so you can make those ever-changing adjustments.

I low carb (only about 40 carbs/day..I'm working on eating more), but..for me too, it doesn't seem to matter, no matter what I eat, I spike, I'll come back down..but I do spike always at the 1 hour point. What short acting is she using, can she wait until she eats. I tend to wait sometimes 30 minutes before my first bite, but sometimes that doesn't even matter. I think you need to adjust her I:CR. It shouldn't matter what we eat, if we have the correct basal rate. Sometimes the MORE carbs I eat, and match it with my basal, I do better. Also, OF COURSE she has a stomach ache, her blood sugars are too high. My stomach always hurts (and bowel problems too, OK..maybe TMI) when my blood sugars go up high, and sometimes it's the roller coaster ride of this. I highly doubt she's saying her stomach hurts as an excuse. Diabetes effects our entire body, stomach aches with high blood sugars is very, very common.

Have you talked to her Endo/CDE/Dietitian? Maybe talk to them and see if a celiac's test (retest) is in order, have they checked thyroid, for addison's, etc...those are just other things we need to watch for too, as t1's.

Keep us posted. I feel - hear your (her) frustration...! Hang in there... :)

7

that was a pretty good meal, no? are you testing 2 hrs after her first or last bite?

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How old is your daughter? In addition to the honeymoon ending, puberty can cause HUGE increases in insulin needs.

9

OH Don't get me started on periods - so hungry all the time and just want to eat chocolate and cookies. Frustrating day today - lows all the time. I've had 3 lows - feel like all I've done is work and eat today.

LIfe and all the changes that come with it always mean we have to change our doses and what we eat. I could lose weight easily in my teens - then I hit 25 and it was a struggle to lose weight. I've heard menopause is even worse so i'll have to make sure to keep a good weight before I hit that too!

10

Good advice, this is VERY TRUE.. curious as to why you're doing gluten and dairy free?

11

Thanks for your reply! I will try increasing her I:C a little more again tomorrow with breakfast. I have to be so careful though because I feed her and then off to school she goes. Ugh. Naomi is 7 years old. I will try and bolus her earlier for the meal as well, normally she eats right after the bg check/bolus. my girl loves wheat bread with nutella or pb & honey so I give it to her for breakfast.

For now I feel like pushing her to be low carb could have some serious back firing when she is a teen etc… So I am aiming for a good balance and teaching her low carb and low gi foods and we stick to those when she is hungry but starts with a high bg. Hoping for the best. Go figure she had a grapefruit and cashews for snack this afternoon ( ha pretty " normal" for a 7yr old- okay maybe not so much). I do not have T1 but i eat pretty low carb so Naomi will have a good understanding (sort of already does) when she is older of the various ways she can eat to control her sugars.

Okay so I wondered if the tummy aches were a side effect of the roller coaster bg’s, I figured they probably were but since I can’t feel it I want to make sure I don’t write off her symptoms without a second thougt. Is it normal then for the tummy to hurt hours after the bg has recovered from the high and stabilized? I know she is not lying about them.

We see the endo in two weeks. I was going to try and navigate my way until then but maybe I will go ahead and call tomorrow.

12

Last bite. :slight_smile:

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Naomi is 7, please don’t tell me it is puberty already!

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Dairy has been an issue for Naomi pretty much since birth, she had to be diary free for the first 24 months of life otherwise she would get blood in her stool and have major abdominal distress (there goes the cow’s milk theory on causing T1 for her). She used to get RLS really bad after having dairy but now I think that was the onset of diabetes because the episodes have decreased dramatically since her dx. I have noticed a trend with her food that whenever she doesn’t have those her bg is much more stable so I tend to go that route when it starts to go wild on us when she has been eating both diary and grains to get things back to baseline without it taking 24 hrs.

15

ha...i love nutella too! for what it's worth, i'm glad you're not low carbing her..she's dealing with enough (sweel girl) with all this D stuff, then having to throw in a diet on a 7 year old child. Have you connected to any kids with Type 1 sites..if not, let me know..I know of a few really good ones. If you can get her I:CR correct and Basal rates stable (yeah, like that's easy..?!!), I think she'll be OK. Maybe ask for a different, faster acting insulin, I don't know too much about the pump yet, but I'm gonna try Aprida (what are you using??) as I've heard it's faster and even works better with the pumps. Think it's a YMMV with that too.

Yes...my entire body aches sometimes when my blood sugars are off, for hours sometimes, it feels like the flu and sometimes I want to vomit, either too high or low. Remember, just because her numbers have come back to 'normal' doesn't mean her entire body, organ, nerve, cell, muscle has caught up with it. Do you check for ketones at 240, if she doesn't come down? Also, be careful, as I'm sure you know, when making changes, maybe focus on one first, bolus..and stick with that for about 3 days...it takes a while for our bodies to adjust to insulin changes...if she's waking up good and she's coming back down after meals and isn't dropping too low when she's active...her basal should be OK. If you change too many things at once, it could drop her too much and you won't know which one is working and which one isn't. It's important she eats so maybe try that first. She's growing too; with all those growth hormones floating around, I know that makes this real tough. I also realize a child's insulin ranges are much different than mine, an adult..so, just make sure she doesn't go too low. Does she feel her lows, able to tell you?

Oh, sending her off to school, that must be difficult. I have a huge amount of compassion for the parents and children who have to deal with this CRAP, but..they say it gets easier. Well, I'm still waiting on that..and I'm an adult. :)

I do think it would be a good idea to reach out to her D Team too.

16

ha...no, not yet....but her little body IS growing everyday..!

17

I changed Naomi's breakfast I:C yesterday from 1:22 to 1:17 and she had a site change before school. Breakfast was at 7:05am and I loaded her with the regular waffle, nutella and prunes. 9:30 she was 125 and at 10:15....58 with .38 IOB! Crappers! Took two juices to get her up over 100. I went back to the 1:22 for this morning, I haven't heard from her teacher so that tells me today went better than any other day this week, but she ended up high all night last night after a good stable afternoon. Three corrections during the night and was still 140 prebreakfast.

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yikes...sometimes it just takes like a 1 - 2 carb change...or, who the heck knows...maybe the wind was blowing north to south rather then south to north or sumthin'. crappers indeed.