When to go to doctor?

My husband is diabetic and last summer we noticed my son was peeing a lot. Took a morning blood sugar and it was 125 sonwe took him to our doctor and he ordered OGTT. That test showed a drop in blood sugar at 1 hour, which he said wasnt typical and sent us to a pediatric endo just to be safe. Endo ordered another OGTT because with the first the doctor only ordered glucose levels be checked and they wanted to also look at insulin and c-peptide in correlation to glucose. This time he dropped significantly at 1 hour and showed super high insulin release at that time. More tests and doctors later showing he has random (often post meal and night time) hypoglycemia, but occassional highs as well. His endo then referred us to a new Endo that he was hopeful would make sense of it all.

The new endo had us taking blood sugar 6-8 times a day and after looking at the random highs and lows she felt he was in the “very early stages” of type 1 and ordered a dexcom g6 for him as she was concerned about hypoglycemia unawareness. But considered him pre-symptomatic so the dexcom and glucometer are our only “tools” in this journey so far.

He has had the dexcom for 2 months now, with a typical week having 3-4 lows below 60, and 4-5 highs, not crazy high but above 180 and only ataying above 180 for 5-15 minutes.

The past 2 weeks we have seen a huge increase in highs. He is now going over 200 with everything he eats or drinks (meals and snacks) and staying there for 30-60 minutes. His morning fasting numbers were typically between 100-125, and in the past two weeks have been 135-150.

I have emailed his clinic, but my question is… at what point do we stop just watching these numbers go up and get a sooner appointment with his endo or when should we just take him to the ER? I dont want to overreact and waste anybodys time, but i also dont want to ignore it until hes super sick. My husband was in DKA when diagnosed and in ICU for 6 days, so I am kind of terrified of that process!!

They were seeing him every 3 months, but had to reschedule his next appointment and its not until mid November.

Thank you if you read this whole novel and for any advice you can give!!

Are you keeping an eye on his ketones? He sounds like he is definitely starting to progress but unless his BG’s don’t come down in reasonable amount of time and or he has significant ketones then most Dr.s are hesitant to prescribe insulin since it stays in your bloodstream for longer than it takes for him to come back down on his own. It may be beneficial for him to start taking a small prebolus of fast acting insulin before meals in order to mitigate those spikes but he probably wouldn’t benefit from long acting insulin yet.

When is your next endo appointment? If it’s still months out then you should probably try to get a sooner appointment but unless he starts showing high ketones or he doesn’t come down on his own then the E.R. shouldn’t be necessary yet. Of course if he starts feeling sick and his BG is high or he has ketones then better safe than sorry.

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While those numbers aren’t nice or great, they happen with a type 1, especially when you first start developing it. It’s hard to control even with insulin. It’s called the honeymoon phase and you keep making insulin until you don’t. So one day your pancreas decides to work and not so much the next day. This can take years in adults but in children it can be weeks. So once he starts hitting the higher numbers it might start changing fast. But staying for only 30-60 minutes and then dropping back down means he is still producing some insulin. The rise in the morning numbers means his insulin production is probably slowing down. It’s harder to judge how much and when to take insulin when your body is still producing it too.

Make an endo appointment for him. At the very least it will help that the endo can keep track of his progress and let you know what they think is the best course of treatment. Test for ketones pretty regularly and keep testing BG’s. If he starts not feeling well, loss of appetite, nausea or vomiting or other DKA symptoms you need to take him to emergency right away.

I was thinking the same - checking ketones. Using a blood ketone meter may be helpful for showing trending, but is more expensive (about $5 a strip) but the meter is cheap - about $25. Also not waiting too long. I was in DKA when dx too, and in ICU for 3 days. Since you know what’s going on, I’d hope your endo would be supportive of avoiding it.

I’d recommend testing ketones in morning when fasting and post-meal after the prolonged high.

Agree should be seen again if numbers are progressively higher. Maybe the peds endo has seen similar situations with a parent or sibling with T1D. Good luck!

You cannot wait until November to get in. Things can develop quickly, like over the course of two weeks. There is some research that the sooner a diagnosis is made, the better people do long term. I dont know, for sure, if that’s true, but some people take that position.

You are not wasting anybody’s time. Certainly go into the ER if something seems wrong, but they may not be able to give you everything that you need. You can always call the ER triage nurse and ask what you should do. Urgent care will be able to get you in sooner. I think you ought to go in this week. If Urgent care is the only way, then that’s a good place to start. Your kiddo wont feel very good at 200. Expect that they will hook you up with a diabetes educator and have a better long term plan than just ‘keep an eye on it.’ If they dont, get a 2nd opinion.

I hope you’ve gone to the doctor! My son was pre-symptomatic for over a year. Once he was waking up at 200 for a few days I called the endo and took him in. She went ahead and put him on insulin. Your doctor may decide to wait though if your child is still is still making insulin on his own. That was basically what happened to us. My doctor told us that since his blood sugar was coming down on its own it could be very dangerous to start insulin. It is a hard place to be! He ate low carb for a year and a half in order to keep his blood sugar from getting too high. Here is something interesting that I found out from all of this - in the early stages of type 1 it is the first phase insulin that is compromised. There is no stored insulin as a normal person would have so when they eat something there is nothing to immediately swoop in and do whatever it is that insulin does. Which is why the blood sugar spikes but then comes back down if someone is still able to make insulin on their own.
One other thing - we did not have to go to the hospital. We just sat down with the diabetes educator for a few hours a couple of times and went on our merry way. That is huge. He didn’t even miss any school.

Keto Mojo strips are only $1 each delivered. Not sure where you are paying $5/strip

I never heard of those. I was referring to Abbott/Precision brand. 10 count is $49.99. The nice thing is they are individually wrapped so helps with shelf life - but I totally agree, $1 a strip is way better especially if using a lot of them.

The Presision Xtra Blood Keytone Strips are also available at Amazon for about $1.00 each

The Keto Mojo have a 2 year shelf life for an un-opened container. Once the container has been opened Keto Mojo recommends they be used within 6 months. So looks like there are a few options available.

I only measure my Keytones once or twice a week so a container of Keto Mojo 50 lasts me almost 1 year and I have not had any go bad after 6 months.

I might be missing something but I get Ketostix and have used them. They run $12. for 50 and you can also find them at some of the various pharmacies. I would call first because it is sporadic who carries them.

The Keto Mojo or Abbott strips give you an actual keytone mmol reading on a meter. Keto Mojo can do blood glucose or Keytones on the same meter but need different strips for each. Just much more accurate and easy to use correctly than the urine strips

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