So some of you may be familiar with our story and what’s going on with my son, for reference:
Anyway I put in a call to my pediatrician after hours number yesterday because of some weird numbers. The person from the practice who called me last night was concerned and helpful however… when one of the practice heads called me this morning to “check up” on our call from last he told me there was no concern over Avery, everything is fine and what’s going on with him is definitely not type 1 diabetes…
I am at a loss for words. He didn’t even entertain a possible early catch of onset, he said the numbers we’ve gotten are perfectly fine and his A1C of 5.r is perfect so we should just leave it all alone. Now I don’t know what to do or think.
I read your update elsewhere, and I think the only reasonable thing to do at this point is monitor and wait for developments. If he hits 200 mg/dL, take him to the ER, period. If he doesn’t, wait for the results of the auto-antibody tests.
If he ends up going to the ER, or he ends up testing positive for two or more auto-antibodies, then I would change both your pediatrician and your pediatric endo and find some competent medical help (which isn’t always easy). Maybe ask around in the juvenile diabetes community in your area to see who is trusted and trustworthy?
FWIW - I was diagnosed Type 1 at the age of 34. It came on very suddenly. My Mom was Type 1 also. We found out I was after several days of my Mom testing my BG (we were on vacation, visiting them in another state). Went to the doc when I got home. My very first A1c was under 6 (don’t remember the exact number, but it wasn’t in the “diabetic” range, it was “normal”. They treated me as a Type 2 because of my age. I lost 25 lbs over the course of the next 3 weeks (I was already very thin). Went back to the doc, and they put me on insulin.
So, one can have a “normal” A1c and still be diabetic. I just caught mine early. Like the other poster said, monitor him on a constant basis, test often. If his numbers go up and your pediatrician won’t take you seriously, find another one.
Good luck and keep coming here. Wonderful folks here!
Thank you so much for the advice and caring, kind words. My husband said that IF he does end up diagnosed we are definitely switching pediatricians too.
Just for more info, about half hour after I spoke with the pediatrician Avery woke up so I checked his fasting glucose and it was 137… he hadn’t had anything to eat or drink aside from water in over 12 hours, and I checked it twice!
He ate breakfast immediately after so I will check him again at the 2 hours mark.
So update, he’s at 156 2 hours after a breakfast of 6 ounces of milk, 2 eggs scrambled and 2 pieces of toast.
One thing to keep in mind with all of this that while it’s super frustrating to not be taken seriously, if his blood sugars stay in the range they currently are, while he isn’t in normal ranges, he also isn’t in current imminent risk. Those are numbers similar to what many kids achieve once diagnosed and on insulin, and while some blood sugars are a little elevated, no damage will come of that unless they stay there for a very long time. So you’re absolutely right to be concerned and pursuing this; however, also important to note that you are also doing a great job monitoring it like you are and will be able to head off any crises well in advance (even going to the ER at 200 is way before anything dangerous starts happening). I do hope you find a better/more responsive doctor soon!
Often in medicine, the loudest danger signal is not a specific reading, but the rate of change (doctors call it “velocity”). For instance, if a BG reading goes from 100 to 200 in an hour , that might be cause for concern but not panic. If it goes from 150 to 275 in 20 minutes, that would be. (I’m making the numbers up, just an example.)
IF the docs are wrong and this IS early onset, things could go to you-know-where in a handbasket very quickly. That’s what would be my greatest concern while in limbo without a diagnosis. It’s very much a personal judgement call, but if he hit 200 under any circumstances, I would head for the ER to head off the possibility of a sudden loss of control and rapid excursion into never-never land. The cliche for this is “better safe than sorry”.
Sure, not suggesting they shouldn’t go to the ER then—just pointing out that it’s still a very conservative threshold (which is fine), so to keep that in mind with all of this. It’s a lot to be worrying about, so important to have that perspective.
Thank you all for all your words of wisdom. I am glad I found this community!
That is one of my biggest concerns and while his numbers aren’t scary high today is definitely an off day for him, I haven’t gotten a reading below 127 since 1 this morning… usually he goes up and down but I will get some in the normal range…
This has been all his readings today, and yes there’s a 12 hour difference and that’s because he was asleep, didn’t wake up until almost 1:30 pm. So it’s odd today, I wonder if this will be a trend or just a weird day.
Have you checked for Ketones when his BG is high? (You said your husband is Diabetic so you probably have Ketone strips.)
For example, BG of 180+ with medium or large Ketones would probably be a pretty good reason to make the trip to ER. A Children’s Hospital ER would (in my opinion) be the best choice. No Ketones (or small/trace) but 200+ would still be a good reason to go to the Children’s Hospital ER. Once you are admitted to the ER you are there for the duration. The time to pick the ER is before you go in.
I would also respectfully disagree with some of the previous suggestions to switch your child to a low carb diet. He has not been diagnosed as T1 so there is no telling if a low carb diet would be good or bad. Obviously there are conditions other than T1 - not trying to scare you. But that is why you want a really good Children’s Hospital that will evaluate, test and diagnose whatever it is. You (as the parents) feel that something is going on and you probably have pretty good instincts for your child. Don’t let any stupid Docs make you second guess yourself. But at the same time you don’t want to jump to any conclusions about what the actual diagnosis might be.
You need to get your child properly diagnosed. Not masked. If he is T1 then he is T1. My opinion is to save any (potential) diet changes for later after a possible diagnosis. If going through the ER is how you get it done then sometimes you have to do what you have to do.
Sorry for any confusion. By no means is this medical advice or based on any scientific study.
This is completely my opinion. Sorry if that was not clear.
Additionally this is my opinion for an undiagnosed child as the OP has described. Certainly NOT for a diagnosed T1 child under the proper care of a competent Pediatric Endocrinologist.
I know this is several years after the origional post but how is your son doing? What was the outcome? MY daughter is headed down this same road, her numbers look very much like your son’s, she was high as 275 but came down to 160 within 30 minutes. I have had several readings that look just like yours. No one wants to even talk to me about T1D, I am afraid I will find her unresponsive one day if I truly stop testing her the way the doctors want me too.
I scanned this too, can you take her to a children’s hospital? I think a bunch of them don’t even charge. It could even be worth paying for a plane trip to get her into one. You might call and try to talk to them and see what they say or if they have any recommendations?
I can hear your concern. You aren’t the first mum to be in a panic. T1 is your fear. To drop 100 points in 30 min sounds like the pancreas is working fine. Kids can have a slow response sometimes. The wild ride of post meal or sweets, spikes before the pancreas kicks in, will send you to your grave. You are also using strips with a +/- 10-20% error rate, with allowably some to be wildly out.
A fasting BG once a week, using 2 strips from one prick, till you reasure yourself that the FBG is fine. This will also show up T2. Then go 2 weeks, then 3 weeks. We are trying to get your anxiety levels down about this. It is a gradual onset, you don’t go from normal FBG to T1 FBG 500 overnight. Don’t do any meal or bedtime checks any more.
There is no way you are going to find her unresponsive, You are tuned in to this. Without any testing, you would notice the weight loss in the early stage first.
I was instructed by a diabetic educator not to test fasting because that is the last glucose reading to spike in a T1D. I was advised to test 2 hour post meal because even a child’s blood sugar should never spike above 180, even better it should remain below 140. I appreciate the words of wisdom and trying to decrease my anxiety, unfortunately until i have a definitive answer i will remain a nervous wreck haha. But thank you anyhow
She didn’t eat much that night, she was cranky and irritable, she just wanted sleep. Her last real meal that day was lunch and she had ham and cheese wrap with apple slices. But if i remember correctly the daycare worker said she only ate half as she wasnt herself during the day either.
You are getting occasional spikes, that could be just strip error. If you get a bad reading use another strip.
I’d question the opinion of the DE. If the child is at 200+ after 2 hours, it’s a different story. Kids can have the occasional short spike, it’s not happening all the time. I know don’t want to hear this, I’d listen to your doctor and leave the kid alone. Or at most, a weekly FBG. The FBG, A1c and bg at 2hr is the definitive answer to any treatment.
It’s not needed, but to reduce spikes. You reduce carbs. cut the simple sugars like fruit juice and such. Have carbs with fats and protein to slow absorption. Don’t have an all cereal breakfast, add an egg and such.
I just found it interesting.