New onset: Odd symptoms

How did you know that you or your loved one needed to be checked for T1D? Any of the symptoms confuse the doctors at first? My daughter was originally diagnosised with Ketotic hypoglycemia because she was low in the ER with lab work that was consistent with the diagnosis ( c peptide was low and insulin levels low). We have noticed lows now after she eats, not just fasting lows but more commonly and concerning are the highs.

Back story: My daughter is 22 months old, she was rushed to the ER in April for unresponsiveness, turns out her blood sugar was 40. This was the worst episode ( likely because she was also sick) but the hypoglycemic episodes have happened several more times. Sometimes they are first thing in the morning, other times it happened 2-3 hours after eating. The pediatrician and endocrinologist had us begin home monitoring, this allowed us to fix the low blood sugar quickly in the low 70’s before they dropped to low BUT this also gave us a snap shot of another problem that was beginning to develop, hyperglycemia. My daughter has had fluctuating high blood sugar now since mid June. She has spiked as high as 275 while sleeping more than 2 hours after her last meal. Just yesterday her blood sugar after nap was 187, she ate a normal well balanced lunch 3 hours earlier. This has happened much more frequently than I am comfortable with, but she will also have weeks, like 2 weeks ago were her sugar stays consistently below 120. The good weeks are the best, she is happy and energetic, my baby girl. Days like yesterday, were she is elevated, I get a cranky kid who can not figure out what she wants and usually ends up in bed 45-1 hour early due to utter exhaustion. I am seeing that cranky exhausted kid at least 3-5 times a week, sometimes even more than that. Her endocrinologist said that her A1C in July was fine and to stop worrying, but her symptoms of high blood sugar didn’t even start till mid June, so her A1C wouldn’t really be affected till September maybe even October. She was than diagnosised with Ketotic Hypoglycemia, which doesn’t even begin to explain her highs and doesn’t explain her low sugar after eating a meal, it only explains her low blood sugar in the morning which happened 3 times since April. I know this is long winded but I am in the hopes that this might sound similar to someone else who could at least guide me in the right direction. I am afraid this might be the beginning of T1D but doctor’s wont even talk to me when I mention that word. :slightly_frowning_face:… any help at this point would be a huge help… thanks

Sorry to hear about your situation and I am sure that you will get a lot of positive responses on this forum. I am not qualified to help in any way except to make you aware that at 22 months, she is only 2 months away from being able to go onto a Dexcom CGM. With a CGM you would have blood glucose results every 5 minutes which could be transmitted to your mobile phone and you could set alerts to advise you of rapid changes.

This may both give you greater peace of mind and actionable data that you could use to better manage her situation. - Just a thought as we all hope for the best for your baby girl.


Heartbreaking for you.

You might read about Reactive Hypoglycemia? I don’t know a lot about it, but you spike high quickly, your body overcompensates so you drop too low.

I found this article helpful, as I had not heard of this before.

The symptoms of hypo are not common with T1D early stages. I was diagnosed at age 5, symptoms were being tired, losing weight, peeing frequently, drinking more, eating more.

This is first time I’ve heard of this.

Sounds like BG testing and frequent small meals may help prevent going to low or ketosis.

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Unfortunately the lows have subsided but she is left now with numbers that are uncommonly high. The lowest reading we have gotten was 72 in the past 2 month. Ketotic hypoglycemia just doesn’t answer my questions on why I have a super irritable child who just wants to sleep but on days were the numbers are normal she is happy. I also must add that she is now getting a yeast diaper rash at least twice a month since the numbers began to rise, she has a significant rise in thirst especially on the days she is elevated. I can literally look at my child and know her numbers will be high. Its so frustrating not knowing

I also want to add that if you are not happy and feel ignored with your doctors, get a second opinion. Years ago I was told by my endo and gp that I was a type 2, even though I asked if I could be a type 1 and had an uncle that died from being a type 1. I switched doctors who sent me to a new endo who tested me without even asking and it turns out I was a type 1.

As type 1’s you can really vary in how you react to things. Usually a type 1 doesn’t make too much insulin to drop so low they pass out unless they are taking an outside source of insulin and it’s the wrong amount needed. But we don’t always fit into proper boxes either. But that might be why they are saying not type 1. Yet she has low c-peptide. There is certainly a sign something is very wrong. So do look up the Reactive Hypoglycemia and do see another doctor if needed as there can really be a difference in endos.

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This isn’t always true. Early onset type 1 diabetes can cause reactivate hypoglycemia. The dying beta cells struggle to secrete insulin in response to a meal, resulting in hyperglycemia. Eventually, hours later when the dying beta cells eventually secrete enough insulin to lower the blood sugar, you end up with too much total insulin circulating, resulting in subsequent hypoglycemia. This is actually more common than people believe in NEW/EARLY onset diabetes. After a few months the beta cells are typically so much destroyed that hypoglycemia is impossible

A confirmed blood sugar of 275 is diabetes, no other explanation besides long-shots like acute pancreatitis. The low blood sugars you’ve described are likely caused by what I’ve described above. Unfortunately the treatment options for type 1 diabetes are extremely poor, with there being only one

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She is too young to be considered LADA , in young kids usually progression of type 1 is usually weeks , sometimes months. But adult LADA in is slow progression, So maybe a slower onset type 1? Meaning you still make insulin for a long time, But sometimes you do and sometimes you don’t, sometimes you make some. It’s called the honeymoon phase of type 1 and it’s very erratic and hard to treat because of the variable.

We get cranky when we have to low BG’s and sometimes when we are too high. If you don’t make enough insulin you can’t use the food you eat properly so you have no energy. Maybe she has some kind of slow developing.

I’ve honestly never heard of “being too young to be type 1”

I’ve heard of many kids being diagnosed younger than 22 months

Hi! I’m sorry you are going through this. I can imagine this could be all-consuming for you.

My son was diagnosed when he was three. Similar to what @MM1 described, he had the typical symptoms - thirst, loss of weight, urinating constantly. We had no knowledge of low blood sugars before that- we weren’t checking. Your daughter was unresponsive which was your first indication of a problem leading the the discovery of low blood sugars. I confess I have not heard of this before. I have the impression that babies are expected to have lower blood sugar ranges than older people. That may be wrong and what’s my point, really? :slight_smile: Only that what is considered a hypo for my son now, may not be for a baby, although I can’t explain a bg of 40 with a lack of response.

You are keeping her safe right now and if you continue to monitor her bgs, you will eventually get a conclusive answer of T1d or not. T1d will result in non-correcting highs.

I’m not telling you anything you don’t already know though. So I’m not being of much help. I can say that I occasionally checked the bg of my other children and here and there would find an out of range (high) bg. It never materialized to anything - at least not yet. I haven’t checked them in years.

Keep us posted. I’m sorry she’s showing irritability. I agree about seeking another professional opinion. Trust your mom-instincts.

Not too young to be type 1, too young to be LADA.

Ahh ok I understand now

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My daughter doesn’t have occasionaly high blood glucose sadly. This is a weekly thing, infact it was steadily getting higher until the week of July 22nd, all of sudden her numbers went and stayed in the normal range. She was a happy toddler that whole week into the next week. Eating and drinking normally, happy playing normal sleep habits ( even sleeping through the night.) Then she had a low of 72 on 08/5 ( not low by some standards but she had the symptoms hypoglycemia so we treated,) this started the glucose problem all over again. She has now had increasingly elevating number again similar to June. I just miss my happy baby, normal blood sugar shouldn’t vary this much. She could eat a whole bowl of ice cream one day with a glucose of 120 than the next day do the same and have a 215 reading. I know I need a second opinion from a physician, and thats being worked on, but in the meantime I just feel lost. There is some much conflicting information on the internet. My heart just hurts for her

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Yes, I understand. It’s not comparable to what I described with my kids - I didn’t mean to imply that. My kids were older as well. I don’t know enough about infants and how their bgs fluctuate and whether it’s different than older people.

Of course. I’m sorry. The readings you are reporting, while certainly high for a non-diabetic, are not so high for someone who is insulin dependent. It would be unusual for Caleb (my son) to exhibit significant symptoms with a blood sugar around or under 200. However, if it is sustained for a period, that could be a different matter.

Has she been tested for ketones?

Testing for ketones is tough, she isn’t potty trained and using the diaper very rarely gives me an accurate result although I have found traces of ketones not sure what the means :frowning:

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From a T1D perspective, we ignore any ketone results unless it is large ketones.

I would have no idea how that would apply in your situation however - only stating for us.

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Is it possible to get another doctor? You need more help. So sorry for you and your sweet little girl.

I asked about ketones only to get a sense of the fluctuation of her bgs. If the highs are being sustained, then ketones could develop. This is when the increased urination starts to flush them out of the body.

You have an endo, which is good. I see you were told not to worry bc her A1c is good. I agree that’s not exactly comforting when you are seeing the bgs and behavior from your daughter. Is the endo reviewing her current bgs with you/do you report her numbers periodically?

Yes, but we have to get approved for a second opinion. I live 4 hours from the next endocrinologist which is rough but I am willing to do whatever I have to for my daughter. Thankfully her pediatrician is fairly reasonable and understanding, I have an appt to discuss everything with on the 30th but I don’t have high hopes. I feel like more times than not the primary doctor always just blindly agrees with the specialist, although I hope this isn’t the case here statistics show otherwise. I have seen this happen often, they don’t “want to step on any ones toes.” All I ask at this time is someone really hear me and maybe monitor her A1C for awhile, I dont think I am asking to much. She was accepted into the Trial Net research program but they won’t see her or test her till she is 30 months old, so we need to make it till April. Thats when they will do the autoantibody test

Her endocrinologist wouldn’t even look at the numbers, she didn’t want to discuss the elevated glucose at all. I even charted all the glucose findings on a chart to make it easy to read. The doctor refused to look at it. Just kept saying its not T1D and to come back in November