My son doesn't tell us when he's low!

My 5yr old son was diagnosed July 22, 2009 with T1. It has been almost 2 years and he still doesn't tell us when he is low!! Sometimes we don't realize until he is literally falling over! It is very scary for me. I am also a T1 I usually start to feel low in the low 60's. We have tested him as low as 27!!! I don't know what to do! I am afraid every time we have to raise his insulin. He is in school and has gym 2 times daily. I'm so afraid that hes going to drop low and they would never realize it because he doesn't tell anyone! If anyone has some suggestion I would love to hear them :-)

Are you sure that he even knows the feeling of going low, can he recognize the difference between not feeling well and having low blood sugar?

If he does know that he is low and just doesn't want to tell him I would find something that is rewarding to him. Maybe it's a favorite snack or a toy and use it as a reinforcer when he can tell you that he doesn't feel good or that he thinks his blood sugar is low.

I work with children with autism so I know this works really well to get positive behaviors out of them. But it also works that way with any child. They want to be reinforced for behaviors that they do, so if it's a good behavior that you like and you reinforce them they will know that hey I get something out of doing this behavior. For instance you're son may think, "hey I just told them that I was low and I got to play with this really cool toy". And use a reinforcer that you know he likes but only let him play with it or have it when he's told you he was low and try not to let him have it at other times.

It's worth a shot, hope it gets easier!

Have you talked to your endo about a cgm? I know he's only 5, but I have heard success stories with children on cgm's, even that young.

My daughter was just diagnosed with hypoglycemia unawareness. She doesn't know she's going low. She was 34 at recess a couple weeks ago and she was hyper and talking and being extra silly at 34! She was low yesterday too. It's just a small sign in her face for someone to recognize, as she doesn't recognize the feeling even when we try to tell her, this is what a low feels like, what you feel right now..  We also have the cgm and it does catch some of the lows, but not all or before they get too low. It is better than nothing in my opinion though.  It is set to alarm at 100 and still we don't catch them all, but more than we would without it.  It's very possible that he doesn't know he's low either. Or that if he does, that he's so busy he doesn't take the time to really notice that he's low. 

Does HE know he's low? I don't always realize it.

My 5 yr old was dx'd May 28, 2009 and is very similar to your son - he never tells us when he feels low. We have just resorted to doing a lot of BG tests. When we test and find a low, we always ask - how do you feel? If he mentions ANY symptom, I tell him to think about that and if it happens again, that is a feeling of being low. I have no idea if it is helping or not since most of the time he says 'I feel fine.' My son also rarely looks or acts any differently. It usually is just the normal time for a check that we find lows. His teachers call me when he is below 60 and they always say, "I"m so sorry, I had no idea, he looks totally fine." I have told them it is not their fault, I usually can't tell either. It is just a problem with young T1 children. My son has been as low as 32 and was just playing and talking as normal!

My son is on a pump, so we have been able to keep his numbers pretty steady after doing quite a bit of tweaking. So fortunately, he does not have daily lows like he did on shots. Still he does have random lows and most are associated with physical activity. To manage gym or recess, I would just have his teacher have him test 15 min or so before gym. Then if he is below a certain number (whatever you set) he should have a snack. I say test 15 min before instead of right before because then he will have time to raise BG if he is low AND he doesn't have to miss any gym due to treating a low - which for a 5yr old would feel like punishment for having a low BG - something he can do nothing about - so he shouldn't feel punished for it.

Since my son's recess follows his snack, we just are testing before snack and he has a really high I:C ratio (1:55 units) for morning snack to prevent lows during recess. For a while we tested before going outside but eliminated that when were were comfortable with the numbers. Then he is tested shortly after recess before going to lunch - so we feel we are catching lows associated with playing. Also if he needs a correction at morning snack (due to being high), then I have his teachers check before recess, just to make sure there wasn't an over correction. This has caught a few lows or almost lows. We are fortunate that he is able to test in class - the teacher keeps his meter on their desk and I just call him over to test at our predetermined times.


Kylie03mom, My son does the same thing!!!! We cant always telly if he high or low because we get the same reaction for both. Hes jumping around and being silly and running all over the house at times!!Every time he is low we tell him this is what a low number feels like and you have to tell us when you feel like this. We do the same for high numbers as well. Ive had diabetes for so long that I always know if I"m high or low!! I am not sure if he would tolerate the CGM. He is very funny about stickers and constantly wants to take them off. I don't know a whole lot about the CGM. How is it used? I heard that its like a pager and you put a sticker on that transmits the blood sugar to the pager. 

Think it's tough for most 5-year-olds to identify and communicate their feelings. 

Talk with his doctor about loosing blood sugar control temporarily.  If you aim for a blood sugar of 150, instead of 100, there is a little cushion if he drops lowers.  I think it's dangerous to have too tight of control in young kids. 


Maybe you can learn to recognize it better on him too. My wife has a good ability to tell when my daughter is getting low. The expression on her face changes, and if she is playing with friends she will often dropout of the activity to be alone. That one is a sure sign of a low. 

My daughter had been diagnosed with sensory too, so we definitely have had issues with all the "stuff" attached to her. She will only let us use certain parts of her body. It used to be only her bum. We have finally been able to get some tummy sites (per dr talking with her and giving her all the choices-leg, arm, sides, etc..) Anyway, the CGM we put on her bum and the infusion set for her pump on her tummy. The CGM literally (through waves in the air) talks to the pump and puts the reading on the pump. I highly recommend it. I know that the artificial pancreas project is in trials and that sounds awesome.. I've heard maybe in 3 years.. and that's even more advanced but two insertions still.  Feel free to message me on here if you have CGM questions.

Jennagrant (below) I agree, lows aren't good in this age group. I might have to move my child's cushion on the CGM up to 125 or something. Even tonight we didn't catch the low until she was 65.


My son is almost 5, diagnosed at 12 months. I started telling him EVERYTIME I checked his sugar if it was just right, high, low, etc. Eventually he associated his feelings with what his BG was and could tell me when he felt low. He doesn't do it so much anymore so I'm trying to get him back in the habit before school starts. Good luck with your son.

Is he on a pump? Could be too much insulin, But I would have to say that his body is so used to the lows that he is not feeling them.  That's what I hear.  High's or Low's if your body is used to it, it will not react.  My son is always hi in the 300's or 200's and doesn't feel a thing even in the 400-500 range!  His body would feel low's at 150-180.  Now the Dr. has him working his blood sugars to 100 so his body can get used to the lower numbers so he won't feel low until he is actually 60 or less.

Hope it works out for you.


Oh and the school should be testing your son before and after gym or any physical activity.

My 8 year old has very rarely been able to feel her lows, even when in the 30's. Honestly, I can't tell either. Her look and behavior don't change when she's low. Our endo worked with us for months to adjust her pump settings and made her targets a little higher. Even with that, she would still have lows in the 40's that she didn't feel. Back in December I was frantic because of the lows she would have (usually due to physical activity or emotions but the low might not surface for 4 to 8 hours later). Finally, her endo put her on a CGM. It has been the saving grace of my sanity! Like others have said, it's not 100% at catching the lows but, for my daughter, it catches 85% of them. I also sleep so much better between night time checks because I know the alarm will wake me up if she goes low. Before the CGM I had a hard time sleeping between her checks because I was always afraid she would go low and I would have no way of knowing it. Our endo has told us that she frequently sees younger children who are unable to feel their lows. She said that many of them do start to recognize them when they get older.

I hope you can find a way to prevent his lows. By the way, gym 2 times a day! That's wonderful! So many schools are cutting gym classes out.

I agree that I don't remember being able to tell my parents I was low at that age. My Mom noticed little things, like my lips getting white, and treated me. It was great when we got a home meter (around '83 or '84?) so she could test me and check... Now, with cgm's it's even better!

P.S. When I got married, Mom made sure to tell my hubby what to look for if I got low, as if I was still little, so he'd take care of me. It was so cute! lol