What else could it be?

6 months ago our (then) 2.5 year old was having multiple hypoglycemic events per day, mostly at night. Waking 3-5 times a night screaming for food. Anytime he was hungry he would scream like he was starving. Something told me I should check his blood sugar and we discovered he would wake at night/have symptoms somewhere around 50-70. We were on vacation staying with a T1D actually who works at a diabetes clinic. They were able to get us a sample CGM. The monitor showed that he was going low multiple times a night but also going high in the 180-205 range after balanced non carb heavy meals. He would spike then a few minutes later plummet and start having massive tantrums as he went down the 60-70’s over the course of an hour after eating. We picked up on habits like the fact that he drinks an entire water bottle at night some nights and had to go back to pull ups because of that.

We saw an endo that basically told us it was normal and sent us home. The symptoms eventually stopped so we assumed it was a fluke.

2 weeks ago symptoms started again after a birthday cake (now 3 years old) He drank an entire bottle of water and wet the bed twice that night. I started testing his BG and his fasting numbers are between 95-107. Sometimes after meals he’s totally normal. Sometimes he’s 150-180 range. More often he’s 120-140 2 hours after meals. But a few times he’s stayed in the low 200’s 2-4 hours after a meal.

I can tell in his face and behavior when he’s high. Under his eyes gets puffy and red, he looks exhausted, chugs water, and often lays on the floor at my feet or wants to be held.

Some days he will have fasting around 100… totally normal in the 90’s every other time I check regardless of meals. Then be 170-190 when I put him to bed…other days he’s high all day long then at bedtime he’s in the 80’s.

Not that I WANT him to have T1D but it’s maddening how it keeps flopping. I just want to know what’s happening. When his Bg was still 200 four hours after a meal a t1d mom friend told me to feed him carbs then take him to the ER. He ate a muffin and then it’s as if it triggered his body to release insulin and he went down to 130 rage.

We have a 2nd opinion appointment with a new endo with experience with t1d tomorrow so maybe I’m just getting ahead of myself posting…. But does this sound “normal”?? Is there anything else it could be other than super early t1d? Is it really normal for an otherwise healthy kid to have such high blood sugar levels so often? He eats a high protein moderate carb diet anyways so it’s not like he’s eating candy and crackers and then I’m shocked he has high blood sugar…

@Rodd610 Welcome Christine to the JDRF TypeOneNation Community Forum!

To me, and I’m not providing professional advice on this Forum, the BG readings and your son’s spikes and dives are not a fluke and happen to many, many people with T1D. What was missing from your post is the insulin you give him [the type] and the timing of injections. Effective management of TypeOne as you probably know, is finding that often elusive balance between food, activity, and insulin; to complicate matters, the amount [the dose size] and timing of injections will change - especially in the young and recently diagnosed. Also, many people in the first few years following diagnose temporally resume producing some insulin which often will influence hypoglycemia - this phase goes by a really funny name, “Honeymoon Phase”.

My suggestion which may assist both the doctor and you, is to keep a pocket notebook in which you note carb counts of food, time and amount of insulin, activity, and especially with a child, your observations. Having lived with TypeOne myself for seven decades, I still have a notebook where I write an abbreviated version of what I just mentioned. I’m tasting and enjoying my slice of his three year birthday cake - and not surprised at seeing my BGL at 290 knowing that I can safely bring myself back into range in a few hours.

Know that there are many things other than food that can cause our BGL to spike and stay there for a while, such as stress or anxiety and excitement with a new toy. Don’t be too concerned when his BG goes high for a couple of hours just so long as it is going back to his “normal” within four hours after eating a meal, you just don’t want him to drop too far. Look at the longer period, such as averages over 7 or 14 days rather than only a single day.

Please keeo us posted on his progress; diabetes is a long-haul condition and it shouldn’t hinder his progress in life - he can enjoy an enjoyable, long and productive life!

Thanks for the response Dennis. He has not been diagnosed with anything yet so these are without insulin (injected anyway). His pancreas is obviously still providing insulin to some degree but I think he may be in the early stages of T1D. The first doc told me this was all normal for a healthy kid…

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hi @Rodd610 welcome to the Forum. Im a mechanical person not a doctor but I have 44 years of experience controlling my Type 1. young kids have a lot of hormones and you cant tell much of anything with a home finger stick machine. They are not accurate enough. Id expect a home stick fasting number to be high 60’s to 120 but in non-T1, his blood sugar could be anywhere and still not mean Type 1. My son (not Type 1) had a lot of the symptoms you are describing and we diagnosed him with several allergies, mostly food. The food we were giving him was causing a lot of trouble for his digestive system.

the 2nd opinion endo is a good start, I would hope someone would order a blood workup to be on the safe side. i’d add a allergy/autoimmune type person, but it is just a suggestion.

good luck!

Hi @Rodd610 . It might help to keep a detailed log of what your son is eating. There are a number of taking apps you can use, many or most of them free: Glooko, Glucose Buddy and MySugr are popular and some allow you to share your logs with your doctor’s office. And of course you can use pencil and paper.
In addition to food allergies @joe mentioned there is something called the glycemic index which places carbs on a scale of low to high: foods low on the scale tend to release glucose slowly and steadily, while those on the high end release it rapidly and don’t “sick with you.” That’s a lot to wrap your head around, especially since you do not yet have a definite diagnosis; but the point is, keeping a log of meals may help your doctor solve the mystery.
I hope today’s endo visit is more helpful than the last one (although that bar was set pretty low to start with). Keep in mind, endocrinology covers a wide range of sub-specialties: not all endos treat diabetes and not all of those treat Type1, so be sure to ask.
Wishing you all the best - please keep us posted.
If he does get a diagnosis ofType1 I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has Type1 diabetes and works in the field so has a unique personal perspective that is particularly helpful.

Christine @Rodd610, I hope that the endocrinologist your son encountered today had some insight and helpful advice and suggestions for you,

I didn’t want to offer this information yesterday and bias the hands-on decisions but now I want to offer that a relatively new medicine is available that has the POTENTIAL for delaying the full onset of autoimmune [T1] diabetes. Before accepting this treatment, you will need to decide between at least two major paths: 1) accept the course of nature and begin living now/soon with diabetes, or 2) use the new treatment option and delay the probable onset of diabetes. A difficult choice for you, so please investigate and gather as much good information as possible.

In case it helps, when I was first diagnosed with DKA and sent to ER the second thing they did was run an MRI of my pancreas and told me it “turned” (aka changed shape) and had less than 1% of the amount of insulin it was supposed to have. First thing they did was run cpeptide and antibody tests, which the results came after the MRI results. Wondering if they have done any of those tests on your son.

Have you done an auto antibody test? Participate | TRIALNET Type 1 Diabetes TrialNet - You can get a home test kit through here. That might tell you if he is in early stages. If yes, you could also check out if he would be a candidate for teplizumab. If he is not, you can atleast cross T1D off.