There is what the doctors and the stats say, and then there is what your kid actually does. Jack was diagnosed at 1 and is just turning 3. We run him higher, and he does feel lows, but only when he is sub 40 or when dropping fast. He has dropped fast and dived low during the night and he *has* woken up. I was with an adult type 1 diabetic for 10 years who always woke up with lows as well. My ped endo said that it is their experience that kids will wake up with a low, but no one wants to take that chance - especially in a kid who can't talk or express himself. We use the Dexcom CGM and when he hits 100 in the middle of the night we turn off the basal on his Omnipod for 30-60 minutes. Unfortunately, only experience with your kids diabetes through nightime BG's or a CGM will let you know what's going on with them. Plus honeymoon and post-honeymoon were two very different modes of operation for us.
Let me know if you want to see photos of Jack with his pump and CGM when he was a baby - it's helped some kids in our area get used to the idea more - although some say "well he didn't have a choice!"
Definitely for safety's sake, I'd rather deal with the lack of sleep and know he's OK. I've only had two lows at night when I've gotten up to test him at 2am and we've had to get up and treat him. Mostly his lows are during the day at school always at the same time in the morning around 10:30am. We had a follow up appt at the hospital this week and ended up lowering his Novorapid in the morning (his NPH stayed the same) so we'll see how it goes. So far the last three days he's been low twice a day. So frustrating :( We've also made a few other changes so we will see how it goes. I'm still new to all this so not comfortable just adjusting the dosages on my own yet. I'm sure it gets easier but my son swears he never wants to wear the pump.
The honeymooning stage is killing me :(
I do have a great diabetes team and when we changed his dosages last week I thought it would help but now he's having more lows at night and still around the 10am mark. I talked to one of the members of our diabetes team today and we changed it again. He will be taking Novarapid: 7 units (down from 8), NHP: 23 units in the morning and then at dinner has 6 units of Novarapid. At bedtime/snacktime he is having 12 units of the NPH (down from 13). I still don't think he's getting enough carbs. He is supposed to have 45 (breakfast), 60 (lunch & dinner) and only 15 for morning, afternoon and evening snacks. I had increased the morning carbs and was giving him an extra 15 grams because we get up at 6am and I was giving him the extra 15g around 8am. I don't know it seems to be so much trial and error due to the honeymooning stage at this point. I'm so exhausted though and don't know how to keep going like this and still function normally while working full time. I'm a single mom and Ty's dad has been involved while he was in the hospital and at all the follow-up appts but is too scared to have him overnight and leaves it all up to me. I am just hoping it eventually gets easier....I would LOVE to have 1 day with no lows :) If the doses that they just changed Ty to don't work I may increase his carbs similar to what you mentioned above and see how it goes for a couple of days :) The other thing is Ty really feels his LOWS at around the 4.5 mark and starts to shake really bad. I'm guessing that it's different for everyone?
I would love to see some photos :) My son swears he doesn't want a pump at all.
I would totally be happy if the possibility of a Dexcom CGM was even an option in Canada but from what I hear it isn't available here yet :(
I'm in Abbotsford, BC, whereabouts are you (secretly hoping you are close by) :) I spoke with our team yesterday and they decreased two of his doses so we will see how that goes. Last night he was close to being low (4.2) but not below 4 which he had been the last few nights. I figured they would have had me lower it more due to all the lows but they didn't. I figured I would see how it goes over the next few days and then if it's close to the same I'll talk to them about it again. I would much rather lower the insulin then start feeding him more carbs. It always seems like so much food already. It's so helpful to hear from another parent that is going through the same :)
OK I was trying to cut and paste photos in here, but it wasn't working out so here is the link to the facebook album where I posted photos of him with his pump and sensor:
http://www.facebook.com/media/set/?set=a.1716822837020.97114.113169...
He was 18 months old when these photos were taken (he was dx'ed at one year). As you can see from the other pictures, you don't notice he's wearing either device. It also doesn't slow him down at all.
The honeymoon state will kill you, and the time immediate after diagnosis will kill you, but it WILL get better. Every day gets a little bit better. I tell people all the time we spent the first little while surviving, and then you move to adapting. NPH though? Lantus is very smooth and forgiving, although I have no idea what you can get in Canada ... it was very useful for me to read "Think Like a Pancreas" - I adopted a lot of stuff for Jack from there. So sorry you can't get the Dexcom, it helps deciphers diabetes in you particular kid. Good luck, we are here for you.
