Ok so I posted in another post about how I was worried about my daughter well after labs and daily finger pricks her sugar level has reached 200 or close multiple times and her fasting levels are higher than he would like so off to a pediatric endo we go. However our insurance requires a referral so another days wait. I am still monitoring her and keeping journal of all she has eaten Thur out the day. But my question is has anyone here ever had the same issue. From most of the stories I have read type one present super fast and child sugars are normally at dangerous level before the parent finds out. The highest hers has been was 203. 3 hours after eating. And from time to time she will get ok results. Her pediatric doctor told us between 70-110 120 max after eating for a child who is not diabetic as they tend to run lower. Sometimes hers are close to 120 such as 128 and soemtiems hers are 150,183,174,144,130, in the morning they can be 110,96,83, 133. Her fasting lab draw 2 weeks ago was 77 but the doctor wanted us to continue at home until we saw the other doctor. So again I guess what I’m asking is has anyone else experience this where they I guess they caught it early? Or it’s progressing slow? I’m so confused by all this. And I’m waiting for endo. But I just wanted to know if anyone else has gone Thur this where levels where high but not rush to ER high. ?
I can’t say I have experience with this (I was diagnosed at 40 myself), but it stands to reason that Type 1 in children is sometimes slow(er) onset than “typical.” Everything about diabetes is far from typical. Some of us have slow-onset T1, some rapid-onset T2. It just varies enormously. There are also some types of rarer diabetes that match your daughter’s symptoms pretty closely: Maturity Onset Diabetes of the Young (MODY). It’s a terrible name, but it is a collection of genetic disorders that presents like Type 2 in young children.
The most important thing, however, is that diabetes is almost always manageable, regardless of type. It is of course challenging, and it’s difficult to see our children suffer. But we have really good tools to manage diabetes. There is a ton of experience here in this forum, and elsewhere online.
As to the last question: I’m not a child, but I am Type 1. I have had only one BG over 200 that I know of, I’m not currently on insulin, and my case initially presented as “mild” Type 2. It is slowly but surely getting worse, and I’ll probably start insulin this summer (after I finally see an endocrinologist). So Type 1 can definitely be slow in onset. Does that happen in kids? I don’t know, but I don’t know why it wouldn’t happen in some kids. Could be the case with yours.
Oh wow I never knew there was anything other than type one or type two. I’m goning to have to do some reading on this MODY. But thank you for you answer. I was just only seeing the fast onset scary type one stories so I wasn’t sure. So far 3 of her readings have been over 200 but more than 4 have been really close like 174,183,169,190. I am a stay at home mom and she just started acting unlike her self. Peeing in bed at night. Drinking cup after cup. Not wanting to play. Like asking for naps when she didn’t take naps. Haveing accidents when she had been out of diapers for a year accident free and zero bed wetting then her stomach would hurt and she was super cranky like all the time! And a fever for 3 weeks and still has one every once in while. First dx was stomach bug. Let it run its course 4 weeks later here we are.
Well, I had the classic saw-doctor-and-sent-directly-to-emergency-and-hospitalized scenario when I was nine, so I can’t help with direct experiences. But my understanding of Type 1 is that the antibodies that cause the autoimmune attack are present years before symptoms actually occur. I’ve heard of some cases of kids being monitored very closely (e.g., through TrialNet) who catch Type 1 before it gets to the emergency stage. And @David49 is right that Type 1 isn’t the only type of diabetes that can happen in kids, it’s just the most common. If it is Type 1, I’m glad you’ve caught it so early. Good luck with upcoming appointments. (And if it is Type 1 or another type of diabetes, you’ve definitely found a good place here in TuD!)
When we suspected Caleb had diabetes, we called his pediatrician and had an appointment the next day. When I later learned the dangers of undiagnosed diabetes, I thought they should have sent us to the ER that night.
The next day at the pediatrician, he had a fingerstick of 293 and off we were sent to the Yale ER. We were told not to even stop at home - just go.
That was 10 years ago. I know one of Caleb’s former CDE’s often treats newly diagnosed patients from home. So things have changed at least in her practice. You are monitoring her very closely and her bgs are pretty reasonable. But a diabetes diagnosis seems more dire to me. How long will the referral take?
We seen doctor yesterday. Referral should be sent today. I called pediatric endo office staff was super helpful told me if they get the referral today then they could squeeze her in this week. Which I’m beyond thankful for. I hate this hurry up and wait. And everything a reading is normal I’m like ok this is good then next reading will be up again. We haven’t experienced any lows yet knock on wood. Just a worried mom.
For what it’s worth, I would suspect part of why T1 often presents in kids with very high blood sugars is people don’t catch it early enough to observe the early stages. I was 10 at diagnosis, and I was definitely feeling off for a while before I became very sick (started dramatically losing weight and all of the other symptoms intensified much more) and ended up testing at that point at 750 mg/dl. In retrospect, when we looked back, it had likely been happening for months but no one had thought to check it out.
That makes sense in all honesty I most likely would not have either I would have settled with stomach virus and went on even for few days after the vomit and upset stomach had stopped I was like it’s just her getting back to normal but 2 weeks later I was no longer feeling that. Then I thought maybe UTI or kidney infection bc she is very prone to getting them always has been. Last kidney infection she has her suage was 150 she had not eaten or drank anything all day except water she was beyond lethargic fever 105.6. We were already at ER. Trace ketones in urine. They never said any of this to me at time I just found out when we were given her records today to take with us. And now not even year later here we are. Doctor ran labs and stated her symptoms suggested possiable diabetes and asked about family history which is pretty strong. On both sides. They never checked her other than lab. I started running log of what she ate and what sugar levels were. And that’s where we are at right now. Just waiting for endo. Her pediatric doc felt very strongly she should see one he did not want to make the dx without a consult first.
I agree with cardamom. Looking back my daughter who was 5 at the time was experiencing symptoms for probably over a month before we took her to emerg. In my defence though we had bigger problems going on at the time, like being away from her and living at the Ronald MacDonald House is Toronto with a baby at Sickkids in critical care recovering from open heart surgery.
They say that most cases of type 1 are diagnosed when around 80% of your insulin producing beta cells have been destroyed, and that accounts for high blood sugars they find. But you may have caught this early and maybe she is just at the beginning stages. It can takes years for all of the beta cells to be destroyed.
But the true test of type 1 still is finding antibodies in the blood as type 1 is an autoimmune disease. There will be an antibody to islet cells, and then another for insulin and then more antibodies to other things as time goes on. Apparently it’s the number of anitbodies they find that helps them determine if someone really is type 1.
Lows–hypoglycemia–are mostly an issue after starting insulin. The general issue with untreated T1 would be hyperglycemia leading to DKA (diabetic keto-acidosis). It sounds like you’re a long way from that as yet, and I have some trepidation about saying this because I know how you can freak yourself out as a parent and see things that aren’t there (been there myself). But there are a couple of indications to be aware of, particularly rapid heavy breathing, along with stomach pain/vomiting and grogginess/lack of awareness. That’s what DKA looks like coming on and you don’t want to mess with it–straight to the ER with that stuff. With all the testing you’re doing I don’t think this is likely to sneak up on you unaware, and it’s not even clear whether this is some kind of incipient T1, but if you end up having to wait a week or more before seeing the pediatric endo you at least should be aware of what to look for.
Thank you leena I’m sorry it runs in it family but in all honesty I’ve never paid it much attention more like oh yeah my grandmother has type 1 or whatever when asked family history never learned anything about it or how it works. So now I’m having do research. I see where it can make sense for it to take longer and miss the signs. Like I said I most certainly would have had the doctor not mentioned it it never would have entered my mind. And thank you drBB I will definately keep my eye out for any of those signs. And yes they have me checked her around clock until we can get in.
Well, and if you really want to be careful re: DKA, it’s easy enough to get some ketone strips (urine ones are slightly less accurate than blood, but should be good enough for this and are OTC) and check daily. If she starts running elevated ketones (I’d prob get worried if they hit moderate, myself, although that’s because then you still have some time before it gets really bad), that’s probably the best indicator of when to go to the ER.
I wasn’t aware you could test that at home. Do I need go to a pharmacy like cvs or Walmart? And what section would I locate them in? Just kestone checkers? Sorry so many questions at once
Ketone blood meters (they can also check blood glucose) and ketone urine strips can be purchased over the counter at most pharmacies (Walgreens is where I get the urine strips). You can ask a pharmacist if you have trouble finding them. Most pharmacies have a “diabetes section” with all kinds of stuff (much of it junk supplements), but “ketostix” and blood meters are usually in those spots. The ketostix are cheap; the testing strips for the blood meter are not cheap (NovaMax’s are $2.00 per strip it looks like).
An example of the kind of meter: http://www.novacares.com/nova-max-plus/
you can get them at any pharmacy - ask the pharmacist, there’s usually a “diabetes” section with meters and dextrose tabs etc. Walmart has their own brand “Relion” that are good.
keep asking questions!! we want to help you, and also, you never know when this conversation could be helpful to another parent going through the exact same thing.
Thank you! So much. I’ll get some today. I’m trying not be to paranoid but at same time I really don’t want to miss big sign so to speak. Finger crossed we get in soon
Yeah, I’d just get the urine strips, which you can buy in the pharmacy—they are over the counter and probably either with the diabetes stuff, diet stuff (people use them when on low-carb diets, since then they are actually aiming for very low levels of ketones, which are safe), or just ask the pharmacist. They are super low tech—you just dip them in the urine, wait a little and compare the color they turn to the bottle (similar to a pH test strip like you may have used in chemistry class).
Thank you! I’m going to pick some up. I have read a couple of stories searching for one similar to mine that’s what made me post this I couldn’t find one I may not have asked question right tho. I kept reading all these super scary stories of these poor babies whose sugar was at crazy level. I felt so awful for those parents. Here I was panicking over 203 and some kids were in the 500-600. So until we go back I’m trying not be to over board but at same time we are 2 hours from closest children’s hospital. Our small town and small hospital I’m not sure could handle it.
Finally we have an appointment!!! May 9
A lot of good responses here already, but I will add another one. My T1 son was probably exhibiting symptoms (the peeing and drinking) for about 1 months before I tested him. There were lots of other possible causes (teething, a bad cold he had) so I didn’t clue in right away. What made me test him was that one day he started to be less active. I tested him and he was in the low 200’s both before and after a meal. I booked a Dr.'s appointment, but then for some reasons I then tested for ketones. There were ketones so we went to the ER. He was not in DKA but because he was so young, they put him on a drip overnight anyways to re-hydrate and we had the whole hospital fun thing…
Good luck with your appointment. If it is T1, it is good that you caught is soon without having to go through he DKA sickness route that a lot of young ones have to deal with.
…and test for ketones. If they are high, best to go to the ER.