Our daughter was diagnosed a month and two weeks ago and her blood sugar isn’t regulated yet. I’m very concerned cause if it’s not high it’s to low and we are very worried . When I check it early it’s in the 500s and sometimes 600s . But once the three hours has past it’s mostly in the 300s or 200s. Throughout the night it gets very low. Her endrocrenolist has been changing her doses on her insulin . But we are very scared . Is there anyone out there that has been through this scenario with a 14 month old Thank you concerned parents
@HeavenlyFaith Hello Leah, I don’t know if I said Welcome to TypeOneNation but welcome anyway!
Everyone goes through a very long time of upset after diagnosis, it’s just the way it is. When you say very low are you talking about less than 40mg/dl?
Before I say anything else, I am not a doctor and I have diabetes, not my child.
It takes a very long time to figure out a little one. Some are very sensitive and some need an impressive amount of insulin to have reasonable blood sugar. If no one told you: higher is better than lower at first and when very young, because it’s not all that easy to get sugar into a very young child and you never know when they are going to not eat or burp up half a meal.
you are doing everything right… so keep going. Diabetes isn’t a disease where 1 shot of the right amount and you’re good. This is an endless “little more, little less, oh they are running around, oh they are sitting down” kind of thing. You will be an expert in 10,000 hours (14 more months) - I promise you. The other thing is that I have had this for 40 years, and every day is a challenge, not very many of them are ever really “regulated”.
keep up the communication with the CDE or pediatrician or pediatric endo. Learn what you can - get the “Think like a Pancreas” book. and hang in there.
It’s been low has 46s . Pretty scary, the endrocrenolist is trying to fix her lows for the past month. Thank you so much for getting back with me about this matter. It’s been very overwhelming I wished I could take it from her. It means a lot to us to be able to talk to others. You take care and God Bless
Hi Leah @HeavenlyFaith, you ARE following the right path for your daughter - you are closely observing her, doing frequent BG Checks [ probably more than she wants] and staying in touch with her care team - and on top of that you are learning how even just a little bit of insulin affects her.
Regulated"??? whatever that is! I was diagnosed 62 years ago and I still have some days when I’m either very high or so low I’m needing to practically eat another full meal [well that amount of carb in 15 - 20 gram increments] and all those carbs without insulin. And those days happen when I’ve taken my usual amount of insulin, not eaten anything ‘strange’ and had my usual activity.
As you may already know, the one thing upon which we can depend, is CHANGE. Yes, our bodies are constantly changing and any change will affect BGL - soon, you will be able to anticipate her BG going way high and know if you should, and how to make corrections
I’m not a medical doctor but I do know that a young child, like your daughter, will often have what others would call “high BG”; and it may be safer, like @Joe said, to maintain a higher BG.
Hi Leah, it’s going to be okay. My daughter was diagnosed at 3.5 years, I can imagine what you’re going through at 14 months and that it is hard. Spikes will happen. Blood sugar will be high at times and that’s okay. Lows are more concerning but you seem to be on top of them and working with her endo. You’ll get this figured out as best as possible. I highly recommend getting a continuous glucose monitor as soon as you can, they are so helpful with little ones.
My only addition would be be to demand a Dexcom CGM and pump ASAP. The cgm will tell you a lot about what’s happening and help you learn in so many ways. A pump will allow small, precise insulin amounts.
I would if the lows happen in the middle of the night, then basal needs to be adjusted. It’s very challenging to know if basal or carb ratios need to change without a CGM, especially with a child that small.
I understand what you are going through. I have all three children with type one diabetes. My youngest was diagnosed at age 16 months. It is impossible to get perfect blood sugar levels at this age…or any age. There is no perfect.
His levels change with his activity, how much he eats, if he gets sick, if he is on a growing spert which usually happens during the nighttime hours …the dr has told us. Some days his sugar seems to be steady for no reason and then it’s up and down for a few days even though he eats the same food and he otherwise is the same.
You can only do the best you can do. When your daughter gets older…even just 2-3 yrs old age will start telling you when she feels low and sometimes she will be and sometimes she will be really high. Children that young just know when their sugar feels really off …whether it is high or low.
We still get up twice a night to check blood sugars…and do corrections when needed. My oldest son with diabetes is 25 and has moved out which is worrisome. My other two are 5 now and 15 so diabetes is just part of our new normal.
Things will get easier …there will still be crazy hectic days but there will also be many joyful one as well. And with one diagnosed so young…she won’t know any different than the diabetes lifestyle …so she should have much better understanding later than one who is diagnosed in their teens. Ive seen this in my other two children.
Just remember youare exactly who your child needs…you aren’t perfect but you are enough.
I’m so sorry for you and your family, definitely not a easy thing to go through! , but you guys can do this , get as educated as you can about diabetes, it’s a discipline disease and don’t let the statistics scare you ! I’ve had it for 40 years and not one side effect ! But I’m am always striving for better discipline! You gotta realize that it’s up to you to help her , your endocrinologist probably wont do much , check her sugar as much as you can there were times I checked 10 -20 times a day to get my pump adjusted, with today’s technology, its easy to get good control, but I’m not a baby and I’m sure it’s scary for you guys 500- 600 is way out of control , study the peak times when that insulin is working its gonna be a full time job !! But like Christ teaches the strong take care of the weak ! I’ll pray for you and your family ! You can control this disease !!!
HeavenlyFaith - something that might also help, that I have found helpful, I have joined a couple of groups on Facebook. T1D Moms and POKED (Parents of Kids Enduring Diabetes). I am just a member of each of those groups but they have helped. My daughter was diagnose 03/09/18 at 9 years of age. I don’t think I would have made it this far without their kindness and guideance.- it is free you just answer some questions. My daughter’s blood is OUT OF CONTROL!!! We have a Dex G6. Now we are really seeing it. They have taken her off of NPH and just increased her Lantus again. Best of luck to you, hang in there.
I can totally relate to this. Our 3 year old was recently diagnosed at the end of March and we have the same issue. Blood sugars are all over the place and he also drops low at night as well. Me and my husband feel so guilty and at first it’s so hard not to feel like you are failing your kid. I connected with another parent and the best advice was just to take it day by day or hour by hour and do your best. I assume your daughter is probably on long acting and short acting and we are limited with dosing and how often we can give it. Every day can be so different and even if you tried to do the same thing every day you would get different results. Just know you are not alone!