Hello! I am new here and worried. I have 3 little boys. My oldest was diagnosed with T1D at 18 months and my baby was just diagnosed a couple months ago with T1D at 14 months old. My middle son is 3 and is having some concerning symptoms.
He was begging me to check him (feeling left out) one evening so I did. He was 170 3 hours post meal. So I checked him again and he was 173. I Went into panic mode and started testing. His fasting blood sugars were never below 100 but never above 120 for about 2 weeks. He was consistently 120-180 throughout the day and early morning hours (midnight-2 am) has hit 229. He stayed in the 200s for 3 hours one night, but hasn’t been that high since. His pediatrician did blood work and everything was normal, antibody negative but his freet4 level was elevated. His fbg was 83, a1c 5.3…
We were told to keep a log book and have an eppt with endo soon, but miraculously for 2 weeks his numbers were normal…never above 106! And then starting 3 days ago he has been elevated again (130-140s consistently).
Yesterday we did a 2 mile hike and played at a park. He didn’t eat much before and after the activity we had a 15 carb meal. He ate it and fell asleep immediately (4:30 PM and slept until 7 this morning). 2 hours post meal he was 183. 3 hours post meal 144. 6 hours post meal 141. And 8 hours post meal 116…he was 91 this morning after no food or drink since 4:30 PM the day before.
My questions are could this be diabetes? Could it be thyroid related? Why normal numbers then suddenly not again? Thanks for any advice. He has a blood draw again in 1 month to test thyroid levels and blood sugar.
Hello. First, as a parent to ONE T1 toddler, age 2, I can’t imagine two and my thoughts are definitely with you. I don’t have any direct, first hand, knowledge into what this could be but I did find a similar post about this same thing from 2008 – perhaps it can shed some enlightenment on the matter!
Hi there. Those numbers are definitely concerning and sounds like it could be t1d that is being caught in the early stages. I had this kind of experience when I was diagnosed about 10 yrs ago at age 18 - sometimes spiking to over 200 but could also be in the 90s etc… I spent about 1-1.5 years without insulin because I had trouble accepting a t1 diagnosis, especially given that sometimes my numbers would be normal. It is definitely something progressed over time though - within months I no longer saw normal-range numbers and eventually accepted the diagnosis and started using insulin. Now I also know that illness can cause elevated BG in normal kids but it sounds like unfortunately this is something that is ongoing. At this point I believe you are doing the right thing by monitoring this and keeping in touch with his doctors. If he does indeed have it, I am so sorry but it sounds like you are catching it early and you know how to manage it since your other kids have it… Hugs
I have no crystal ball, but based on the information you posted, I suspect this is early T1D. I’d continue occasional fingersticks and keeping a log, test more often if you observe symptoms or you son complains of symptoms, and have his A1c checked every 90 days or so. If he develops symptoms that are even moderate in severity or has minimal symptoms that don’t subside, I’d seek medical care immediately.
Another option is to enroll him in the Trial Net program, where they test for antibodies on a regular basis. They’ve collected and analyzed enough data to state that everyone who eventually tests positive for 2 or more antibodies will definitely progress to develop Type 1.
I am so mad at myself. I requested trialnet, got the kit, but threw it out after my baby was diagnosed. I should have done it sooner but was scared and then after the baby was diagnosed I was an emotional wreck and threw the kit in the trash! I regret it so bad bc I can’t get another kit until his year is up this november. I can’t believe I did that, but I was angry at anything diabetes related and I didn’t even want to fathom the thought he could be next.
Thank you!! I am beyond stressed and worried. We caught my baby’s early…he is still only on fast acting diluted insulin and has normal fasting numbers. I just pray that this is all going to just go away. I checked him a few minutes ago (4 hours after eating) and he’s 121. I’m not sure how high is too high 4 hours after a meal for a child. There is no clear research for children it seems like.
We are waiting for his endo appointment. The pediatrician did a full metabolic panel, checked for antibodies, fasting blood sugar, etc. I don’t know what more needs to be done except the glucose tolerance test (which is supposed to be done at our endo appt). Endo was sent his case on August 3rd and as of this past Friday they told me it was still under review and I should hear something soon. What more would you suggest?
A gtt is usually not necessary when diagnosing children with T1. I just don’t get why they are dragging their heels on this. Your child presents with multi symptoms…has erratic bg, the endo was given the info the first week of August, and yet here we are, August coming to a close and still no response. What are they waiting for…something dire? Keep on them. You have 2 other children with D…you’ve walked that path before.
Thank you. My oldest just turned 5 and actually had a check up today (a1c was 6.7 YAY!) but I brought up my nont1d to our doctor and she said he definitely needs seen so I’m STILL waiting to get an appt. They want to do the glucose tolerance test asap according to her as well as genetic testing on all of us.
Wow…never have I heard of a glucose tolerance test done on anyone suspected of Type 1…let alone a child. What is “asap” when you’ve been waiting since early August?
UPDATE so with direction of endo we inserted dex on my non diabetic son. I already had the suplies and my oldest son is healing from a bad skin reaction to the dex adhesive.
I am not really what to think about the data. The bottom red line is set to 80. Any thoughts?
Disclaimer: I am not making a diagnosis, and please do not take any action on anything I have to say. But this looks like early T1D to me. Unless my vision is getting worse than I thought, it looks like about 50% or so of the readings are over 100. Even if the higher numbers are post-prandial, looking at the tracing as a whole, the numbers seem suspiciously high for a non-diabetic child. (If memory serves, post-prandial BG should be under 140.) To tell you the truth, I am not familiar with what other potential causes of an elevated BG in a child your son’s age are, so I can’t comment on what else might be causing this elevation. In light of the fact that this is days (maybe a week?) after your first post, I suspect this isn’t just a “passing” thing due to something like a virus, but I could very well be wrong.
I know this isn’t what you want to hear, and I’m sorry. If your 3-year-old actually does have T1D, I know the fact that your other two sons also have T1D does not make this any easier, despite the fact that you already know what to do. It’s yet another shock and another mourning process to get through. But you can utilize TuD as a resource for both information and emotional support. Please keep us updated. We are here for you!
I am definitely preparing myself for the diagnosis. My youngest was just diagnosed in june and I’m still mourning that. It’s been a very overwhelming summer. In some places I’ve read that kids can be within 100-200 and normal but a lot of what I read is exactly what you said, nothing over 140. I’m interested to see trends the rest of the week!
I’m so sorry you are going through all this. This is so much to take on and try to manage while emotionally coping. I hope you have some support near you - to allow you to get some “me” time every once in a while. Even if it’s an hour locked in the bathroom with a good book - or a pillow - or something.
I think you are doing all the right things to be able to properly care for all three of your boys. The not knowing is probably a very difficult part of all this. You are so well equipped with knowledge of how to care for them, and there isn’t much more I think you can do, but follow through with your appointments and just staying aware. You are ready to take the necessary action should it be needed.
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