Two boys diagnosed this week, need advice

My 7 year old and 13 year olds were diagnosted this week after the 7 year old went into DKA. We are home from the hospital and we are having so much trouble getting our younger son under 200. We are calling the doctor constantly and he doesn’t seem concerned that we are floating between 200-450. Makes it sound like we just need to keep fine tuning. Is this normal? I’m freaking out that it is so high but the doctors aren’t at all. We have no diabetes in our family and are really lost in all of this.

Hang in there. You certainly have a full plate with two kiddos diagnosed at once.

The higher numbers in your younger son, especially Since he was in DKA are normal/expected. Remember this is a marathon and not a sprint. Take each day as it comes, take a lot of deep breaths, and rely on the bad-ass diabetes community to provide you support.

Dr Mike (UF Pediatric Endocrinology)

Welcome to you @kristywuehler,

Your kids will be fine - but you will be a wreck for a while. I don’t mean to sound flippant but the bottom line is that you will be trying your hardest, studying about this mysterious condition that CAN NOT be controlled and loosing sleep. Your kids are at the age where they too will be curious to learn and will take things in stride. I say ‘can not be controlled’ because every body is different and will react differently - you will see how differently your sons respond to insulin and different foods - but T1D can be managed very successfully. Now in to 60 years with T1 and still learning; please feel free to ask this group anything you want - and yes, vent here with me / us rather than being too frustrated in front of your kids.

I agree with what Dr Mike said - after a bout of severe DKA a small body takes a while to recover; I was kept in hospital for two weeks when I was diagnosed getting my body closer to normal levels - of course in those days a ‘simple’ BS test took a day.

My advice to you - stay alert, learn and try to relax. Yes, relax and don’t forget to care for yourself - and love them while not blaming them for doing something wrong when BGL hits 250 after you fed them a ‘perfect’ meal.

Higher numbers after DKA are normal, dont worry too much about it, mine took a few weeks to get back into range! Because he is 7, after he is settled in try and get him on the pump or omnipod with a dexcom or freestyle libre, it really helped me to get mine down and since he is younger it will probably be covered on insurance! private message me if youd like to talk :slight_smile:

my heart goes out to you . the numbers will be up and down as there are so many variables . it will be very frustrating. my 15 year old daughter was diagnosed with type 1 on 11/5/16. she jumps through hoops and hurdles following the regime to the letter with exercise and diet and still has high numbers. her honey moon period is over ie does not produce any of her own insulin any more . on 5/7/16 she was diagnosed with celiac which makes absorbtion even more complicated. it takes time to adjust and you will get into ‘some’ routine in a month or two. my daughter is waiting for an omnipod where problem solving will be a lot easier. there is no sense to this evil silent sinister and suble disease that will encroach on every aspect. wish i could give you a big hug. you are not alone. be strong and dont neglect yourself as your boys will need you. the numbers have been as high as 15-26(in UK measurements, which is equivelent to 460.) we live in the uk. good news is even with such high numbers the HbA1c after 3 months was 7.4 you are in my thoughts and prayers take care. In time you will know more about diabetes more than any doctor. our medical experts can be very insesitive aswell

Right after diagnosis it is very typical for you to start making insulin again. This is another reason why endos will be insulin conservative at the beginning. Both your boys will have some kind of "honeymoon " in the coming weeks and when that happens they will only need a little insulin. Maybe no insulin for s little while. A bad low is worse than a few days high. I hope you have access to a CDE certified diabetes educator. They will be most helpful in the next 4-12 months.

My daughter was diagnosed at 9 and even though she wasn’t in DKA she was in the 200-400 range for weeks. Our doctor was so tired of my panicked calls he told me not to test her so much. Ugh! Goes to show, not every T1 is the same, some have honeymoons others don’t, depends on where the condition is at the time of diagnosis. Also goes to show that since you will be the one managing day to day you need to trust yourself, not just the doctors.

In the beginning some doctors do not “allow” corrections. I assume it’s not only in case they revert to the honeymoon phase, but so that they can better determine the child’s insulin sensitivity. I second yasssssxxx suggestion to get them on continuous glucose monitors (CGMs) as soon as possible. That way you will all be more comfortable doing corrections and monitoring the drops in blood glucose without having to test every 1/2 hour.

We must balance the need to feel safe by keeping their BG higher and preventing dangerous lows with the reality that children that are maintained at lower A1c levels through intensive management from the beginning create metabolic memory that protects them from some long term diabetes complications. See

And finally, I apologize if all this talk is making matters even more overwhelming. “Intensive Management” is not easy, and probably so much harder with two, but it’s doable. Take it all in or ignore it, everyone deals with these challenges differently and there is no wrong way to cope. Your boys will come through this and so will you. :slight_smile:

Hang in there!