Thank you for shareing. That’s kinda what’s happening here. Like I said we thought stomach virus and then I thought was taking longer get over but this previously very active child spends more time sleeping or laying down. And I’m going to pick up some strips first thing in the morning and I will be testing her to be safe.
My 8 yo is being investigated for type 1. I monitor the kids occasionally because I have diabetes (diagnosed in my first weeks of pregnancy, though in retrospect looking through old medical records, I had slightly high fasting glucose for years before that)… My 8 yo has actually had abnormal numbers for a few years, but based on Hba1c slowly rising over the same time, it is progressing. We also see numbers over 200 after eating high carb meals. My 5 yo also has a higher than normal hba1c for a child and she is also now being monitored. We see numbers for her around 180 after high carb meals.
In our case slowly developing type 1, or some variant of mody are on the table. Though no conclusions as of yet.
We are currently managing with insulin for me (I’ve been using low dose insulin for nearly 9 years now), and low carb (aka. Dr. Richard Bernstein) for all of us. If you are interested in this approach there is a great and very supportive group called typeonegrit on facebook.
We’ll be seeing the endo again in June and see what the next steps are… but she is very supportive of the low carb approach and we’ll be using it as long as possible and to delay requirement for insulin also as long as possible.
I am a long time T1D and have 3 friends that have kids that were newly diagnosed within the last year. If you suspect your daughter is diabetic go to an emergency room that either specializes in kids or diabetes. One friends kid was sent home 2 times until the 3rd visit the on call doctor figured out what he had, now he is on an insulin pen for a year until he “stabilizes” and then they will put him on a pump.
Oh wow that sounds like what my daughter is doing. Her numbers are high around 200 other times they can be 150-160. After meals. I didn’t know it was possiable to develope slow bc you only ever hear of the scary cases. It only stands to reason you could but I wasn’t sure. But I am super happy to know that for cases like this they can possiable delay insulin and just switch diet as long as levels stay controlled. Thank you soooo much for shareing!
Our ER is far from a pediatric anything. They barely hold it together for adults. He closest one to us is a 2 hour drive. So we are trying to hold out we have an appt may 9th with the only pediatric endo close to us and even he is hour away. I have been constantly monitoring her to ensure her levels don’t go to high.
Sounds like you’re doing great given what you have to deal with. Keep it up and keep us posted
Hi. From what I’ve seen and read the best bet to delay things are 1. Maintaining normal blood sugars (this means low carb diet following Dr Bernstein - for kids his approach is high protein). 2. Check and optimise vitamin d levels (we supplement). 3. Epa (supplement) may be beneficial for some. No guarantee, but no harm to try.
I am on a closed facebook group called prevent autoimmune disorders. Basics are reduce inflammation, focus on gut health, keep blood sugars normal. The other great group as already mentioned is typeonegrit.
Plenty of great experience here too on tudiabetes.
Ok while awaiting for the doctor I’ve seen some pretty scary numbers but none above 203 and none lower that 83. Until today she was 125 before breakfast around 830. She had some grits and part of a biscuit. Well fast forward to our 2 hour check. She was feeling super awful fell asleep in my arms I laid her down checked her 61. I thought that was way to low so I gave her some cheese crackers and little bit of half tea half water. Then it shot up to 152. Anyone else had this happen?
wow. I was wondering how you were doing today. that seems so confusing - eat carbs (grits & biscuit) and have your bg go down. and you still have days to go until you see the endo. keep checking and logging - the more info you can bring with you will only be a help.
That’s what I thought. I never expected to see 61 so I cleaned another finger on her other hand to check again and it said 62. So I was like ok so that’s right. I started checking every hour after that. Because it really scared me to go so low after eating. Was very strange.
Could be reactive hypoglycemia. If her beta cells are failing the heavy carb load could have caused a larger than needed insulin release. Personally, I would be careful with heavy carb meals. I’m not saying go low carb, but do tread lightly. Offering some protein &/or fat with the carbs can help slow carb absorption.
I’m so sorry you’re having to go through this, particularly with a little one. My daughter was 11 at dx.
Wow! I had no idea that could happen. Thank you so much for shareing. Guess I’ll have do more research on retro hypo. I’m trying not to change her diet yet doctor said feed her like we have been so endo can get accurate results? But I am definately going to pay more attention. And will be adding protein. Because that number really scared me. I’m still new and learning something every day.
The endo needs to see the variations in the numbers, so sticking to what she normally eats is a good idea.
I see you mentioned getting ketone strips. A couple of things to consider:
Everyone spills ketones after fasting, so checking first thing in the morning won’t be much help. I wouldn’t worry about checking unless she has high BG readings (>200) a couple of times in a row, & then only if it’s not within a short time after a meal.
Make sure you’re keeping her hydrated well. Lots of low-/no-sugar liquids throughout the day.
FWIW, it’s been 8 yrs & I’m still learning. Whatever the outcome, you’re already a step ahead.
I did get some strips just invade she goes back up to the 200’s. Yes this kid drinks like k fish. She mostly loves he milk. And if we do give tea which our tea isn’t very sweet my husband doesn’t like it to sweet I half water half tea that mainly lunch or dinner. When she doesn’t want milk. And when she is outside and it’s hot it’s water water water. Wanted have them on hand since we have wait till Tuesday. Her pediatric doctor said child’s “normal” levels should be 70-110 no more than 120. This little one is all over the place! More in the above range than anything. That 61 today was really the only low she has had well that I’ve caught I’ll say. I check when she first gets up, before each meal, and 2 hours after each meal and at bed time. I will also check her if she is acting different. That’s how I caught the 203 that day. She was 200 that morning after breakfast then came down on a recheck to about 150 and then about 11:30 she took two very small bites and I say that bc she has a very tiny mouth I mean so small when she was little we had buy premie sized nipples and pacis. By anyway she fed rest to dog. And went outside and actually played and was running around till about 3:30-4 when she was screaming and crying and so thirsty. I made her come in washed her off gave her water and she fell right to sleep. Something told me check her and so I did. I’ve recorded everything from what she ate drank, and what levels where and how she felt I want this doctor to have all information I can provide. I’m very nervous. And scared for my little one who already is no fan of doctors.
This might be helpful.
It’s a good source for nutrition info. The database is searchable. It’s also available as an app & a pocket-sized paperback.
I said low/no sugar drinks but I should have said low/no carb drinks. It’s good that she likes water.
61 is in normal range for a non-diabetic kid (based on Dr Bernstein, what I see in the typeonegrit group for their non-diabetic kids, and what I’ve seen in my own daughters in the past, though unfortunately not any more). However, the fact that her blood sugar is swinging around would make her feel terrible.
In early type 1 the pancreas can work in fits and starts. Thus sometimes it will bring sugars down, and sometimes it wont.
You can correct a low blood sugar with sugar or a small piece of candy. This will get blood sugar where you want it to be, without wild up and down swings, and will be a useful skill for you as you progress in learning how to manage this. You can use the table below, adjusting for your daughter’s actual weight. This is from Bernstein.
IMHO, you already have enough abnormal data to show the doctor. GIven your daughter is feeling so bad and having sugars swinging around like this, you may want to start controlling how much carbs she eats at a meal.
For example: decide (maybe arbitrarily as a starting point), that you are going to eat 15 - 20 g of carbs at each meal, maybe 5 g of carb for each snack (does she snack?), then add protein (she should be eating about 3 - 5 g of protein / kg of body weight per day, spread out, as per my daughter’s pediatric endo).
Note that weight of fat, protein, carb is not the same as the weight of food. Ie. 1 egg may weigh 50g but contains 6 g of protein. 1 oz of meat also will contain approximately 6 g of protein, depending on cut. You then eat enough fat (and choose naturally fatty foods for her) so that she is not hungry. Knowing this you then work backwards for meal planning at each meal.
Document what she’s eating and her blood sugar response to various foods will also be helpful. At least start counting carbs so you can quantify her responses. Certainly increase protein and monitor how much to make sure she is getting enough. Make sure that you never give carbs alone (always combined with protein and fat, to slow absorption).
Myfitnespal is alternative application you can look at for working out the nutrient content of foods.
Hope these are some useful ideas for you. Going to be a steep learning curve and everything may be chaotic for a while. But you have your daughter’s back, and we’ve got yours here to provide as much support as we can, and you and she will be ok regardless of her coming diagnosis.
Thank you for all this amazing information. And I’ve been checking out typeonegrit group. Yes she does snack Thur out the day. She is either constantly hungry or will eat few bites and refuse to eat anymore. guess it’s a good thing I was going grocery shopping today. I’ll be doing some research on meals first thought.
I’m very overwhelmed and trying very hard be patient until Tuesday. But her levels are being so strange yesterday she was pretty good day. That morning they stayed pretty good work up at 99 and was 119 after breakfast. But that after noon she went up to 152, and was 149 before bed. Then this morning she woke up at 86 before she ate breakfast she was 152 (she drank some Watered down tea) and two hours after breakfast was 241(very small bowl of grits and some ham and watered down tea) I know not the best breakfast but I didn’t have chance for shopping yesterday. I rechecked her hour later and she was back down to 130. Sometimes levels are normal and then other times I just don’t understand. On the upside she has perked up last few days wanted to play more so for that I am thankful.
It is overwhelming and frustrating! I’ve also got a start-stop pancreas (being early in the progression), and it can be very confusing to deal with.
One thing you might consider is actual carb-counting. I know you aren’t changing diet til you see her endo, but a “small bowl of grits and watered tea” can have a surprisingly large amount of carbs. And those carbs (starches from grits and sugar from the tea) are easily, quickly, and completely converted into blood glucose. If I were to eat grits and even half-strength tea, I’d also likely have a similar 200+ response.
If your daughter is prescribed insulin (which seems very likely), you’ll have to learn carb-counting anyways. Can’t hurt to try now, so you can let your endo know how she responds to amount of carbs rather than the meal itself. One of those things many of us have to learn: weigh food; calculate carbs; make treatment decisions based on that information.
My friend brought me over her food scale and she helped me find some recipes for low carb meals and snacks for toddlers especially sicne she is a picky eater and I am by far from a master cook lol. I’m going to the grocery store today. I’m gonna mark today in the log that we switched to low carb especially after that scare. I know we aren’t supposed to change it but I’m also not gonna watch that number climb until Tuesday. I’ve been charting sicne April 26. Today is may 6. That’s plenty of data for the doctor. So I’m going to switch her diet around just to be safe until we see Endo. Then he can see how she was before and after.