Take good care of him. It certainly is nice that you have your husband to help out. No point in both of you being awake all night - then tomorrow you are just both tired.
Perhaps one of you takes a 4 hr shift to monitor your boy while the other (really) goes to sleep. Then swap. If you are both zombies tomorrow that doesn’t help anybody. And it doesn’t take two people to do a fingerstick. (lol)
I would also suggest that tomorrow during business hours (assuming no BG 200+) that you call your Pediatrician and explain what the Endo has said, how the Endo has acted and how you do not feel that the Endo is putting the welfare of your child as his priority (which should be a GIVEN for any doctor). Your Pediatrician sounds like a good doctor. She may be able to provide alternative paths to testing, diagnosis, treatment, whatever as opposed to having to deal with the (useless) Endo.
Just an update, I did test him a couple times throughout the night and he stayed elevated but never reached 200 so that was good.
I am a little disheartened this morning though because I called to try to get him an appointment with a different endo and they said since he hadn’t been diagnosed they would evaluted him for “pre-diabetes” and the earliest appointment is August 10 since he’s “not in any danger right now”. If for any reason something like what happened yesterday were to happen again to call our pediatrician.
So it looks like, at least for the time being, no second opinion and we’re stuck with the first eno but at least we have the other labs scheduled for next week so that’s the only light in our tunnel at the moment.
I think that could be a pretty bright light since it may tell you if he’s actually in the early stages of T1. Once you have that information, the next steps might be clearer, possibly including a quicker appointment with an endo. In the mean time, it sounds like you’re doing the best you can with a difficult situation. He’s lucky to have parents who are so on top of things.
I am just upset that we can’t get anything any quicker because he doesn’t fit in their box and present with textbook symptoms so there doesn’t seem to be any urgency from the providers, and I get it, I do but at the same time he’s symptoms are becoming more frequent and yesterday they made him sick so I am just wanting answers sooner rather than later. But like everyone says we’re doing everything in our power and if he ever really.spikes we’ll take him straight to the er, I just hope it never gets to that point and I really am trying to maintain hope that something else entirely is going on and he won’t end up with the diagnosis but the last few days aren’t helping that…
@Momof_35 - It would be an option for your Pediatrician to order the suite of diabetes related antibody tests which you could get done at a lab like Quest Diagnostics or LabCorp. It would be a fast turnaround. It does not have to be an “Endo” that orders the tests, only a “Doctor”.
Just another option but totally it would require your Ped to be on board.
Remember what the Ped said however… a BG of 200+ and go to the ER. That would be following your Doc’s orders and would also be quite reasonable.
Decide in advance (if the ER trip becomes necessary based on your Doc’s orders) WHICH emergency room you would want to go to. This way, you don’t have to think about it “on the spot”. My suggestion is better to drive further for a better facility. If you have a nationally ranked Children’s Hospital, then absent any contrary information, that would be my choice over a closer local facility.
Yes, we’very already discussed that. We will go to the ER with the group we’re trying to switch to. However one of the heads of our pediatric practice just called and told me to leave it alone that he definitely doesn’t have diabetes and all his numbers are completely normal. And right after that call Avery wakes up with a 12+ hour fasting glucose of 137…
I would suggest that you stick with the last official orders you received from your Ped which was to go to the ER if his BG hits or exceeds 200 while waiting for the labwork to be run for the antibody testing.
With my child, when she eats simple carbs like frozen waffles or any sort of cold cereal with 1% or skim milk her numbers spike within 45 minutes of starting to eat. (Protein and Fat slow food/carb absortion so would decrease a spike). So if your child eats any foods similar to these and you wanted to check his BG you might want to check around 45 mins after and depending on the food (and all kids are different) you might catch a spike towards the high point.
As you are obviously aware, a fasting glucose of 137 is hardly what one would consider typical.
Just out of curiosity, as far as taking our child to the ER with a spike above 200. In our case the closest ER is 40 min away. With the way things seem to go by the time we got to the ER his numbers would certainly be lower. Do I just take the glucose monitor? When my son hit 235 I thought about going to the ER but worried about this exact scenario.
Thank you for this discussion. My 8 to new endo said she’s pre-diabetic. Also said spot readings over 200 (after consuming carbs), were no reason for concern.
I do not agree with her conclusion. However fortunately, following typeonegrit approach her sugars are mostly below 160… And her a1c dropped from 5.9 to 5.4. So I am OK to continue this approach with close monitoring for now.
We’re waiting for trialnet to get more comprehensive antibody testing.
I hope you get some definite answers soon. I love this blog (because of her great writing and sense of humor) and her situation is/was similar to yours, with 2 sons, now both diagnosed with type 1. They were in TrialNet and if you go back a year or so, you’ll find some similarities in her stories.https://bigfootchildhavediabetes.com
I agree with so many, that having doctors who speak with respect and who will listen to our concerns is vital, and I’m glad you’re seeking out some alternatives. Best wishes to you!
I have also followed Katy’s blog for many years. Her situation is so unusual where she and one son have essentially watched themselves move into Type 1 diabetes after another son was diagnosed. Katy may still be getting by without insulin but the other son did pass the threshold for treatment this year. The research coming out of TrialNet is fascinating. One of my sons was tested but none of the grandchildren so far.
This absolutely sounds like my 12 year old daughter )father is T1D). I caught a 14.7(264) on Sunday after she stopped eating and complained of nausea and feeling weird. We’ve been seeing even high 160’s 2 hours after meals for about 6 months, with headaches, increased thirst, increased toileting obviously, unexplained dizzyness etc. I took her to the emergency in Melbourne Australia where the doctor bsiclly acted like your endo. Telling me she was fine because when they did her blood it was 5.4 (97)with only 0.1 ketones. during her GTT on Monday just gone she was 10.9 (196) at the 2 hr mark.
Waiting very impatiently. My husband is in the US and not home till Friday our time. We’ve had everything tested from autoantibodies, c-peptide, coeliac, thyroid, etc etc
14.7 is not “fine”. That’s well past the threshold for diagnosis. A nondiabetic person shouldn’t ever see a number like that.
You need to be the strongest possible advocate for your daughter . . . but you know that. Good luck with the doctors, and please let us know how it goes.
Wow… sounds like you may be in a similar situation however you’re catching much higher numbers than we are. Highest we’ve gotten is a 196 2 hours after meals. Sounds like you caught it early (6 months ago perhaps) and since her numbers are going up she’s progressing. We’ve only been noticing and monitoring Avery for about a month. This week in particular I have noticed all of Avery’s numbers are creeping up. 3 days in a row I got a fasting reading 130+ and his after meal numbers are averaging 150-165. He’s had a c-peptide done, still no results on that and goes for a gtt and antibody labs tomorrow morning. Hopefully we’ll get more definitive answers soon, as I hope you do as well! Keep me updated on your daughter please!
Thanks David, I’m deff trying my hardest I’ve complained to the hospital- waiting for their reply. I said in the complaint that testing her bsl and ketones should have been step number one upon arrival to hospital, not 2.5 hrs after arrival.
Momof_35, good luck with Avery’s tests. My gut says we may both be T1d parents soon but, hopefully with our knowledge here we can avoid DKA for our babies xx
Will update when I get results
Ok so my daughter’s blood work is back EXCEPT the antibody testing which takes longer.
So her CPeptide was normal, as was all the other bloods, except for the GTT.
Her fasting bsl was 4.7(85)
1 hour was 11.6 (208)
2 hour was 10.4 (187)
Which puts her in pre diabetes if it were type 2.
However I have found a document which says that cpeptide doesn’t usually go low in a type 1 diabetes until 3-6 months before diagnosis. So it still could possibly be T1?
You need to wait for the antibody results. Those are the most relevant tests. It is surprising those tests were not run overnight and resulted back to the doc the following morning. There are about five relevant tests for antibodies. Do you have the breakdown of exactly which tests where scheduled? (“Diabetes autoantibodies” must be a panel comprised of individual tests)
I’ve complained to the hospital- waiting for their reply. I said in the complaint that testing her bsl and ketones should have been step number one upon arrival to hospital, not 2.5 hrs after arrival.