We are on our own this weekend. No calls to our case worker are needed. Riley is on a fixed carb plan for now nph/novolog. She gets the nph twice daily and the log only before dinner. We adjust her insulin based off her numbers I guess and possible activity. Anyhow last night for dinner her numbers were actually in a normal range not something that we normally see at dinner time.She has been on 11 nph and 4 log. We dropped both last night by one unit. My husband thought we were wrong to drop the nph. I was sure we should her 2 a.m. check the night before she was in the 130's and by breakfast high 70's. I didnt want her as low at 2 a.m. so she wouldnt drop as low before breakfast. at 2 last night she was still in the 130's so yay for me calling it right.
As for the patterns she seems to run really high during the week at school 200-300's and normal to low here on weekends for us. I know her insulin needs to be adjusted for each but I am not sure by how much its safe to drop at once. I am not really asking just stating I am not sure. We call our case worker tonight to check in and we will ask then.
Her numbers were so great I am wondering if she might be honeymooning or if its just the pattern of good numbers on weekends because she is way more active here than at school.
More just sharing this time that any questions. It feels good I am getting whatever wacky plan our case worker has us on. Which will be changing as soon as we get a endo.
Congrats! It sounds like you are starting to have more of a partnership w/ the case worker when making adjustments. It sounds like you are starting to know how your daughter's body reacts.
I hope once you get an endo, they'll put her on a more modern long-lasting insulin. NPH has more ups and downs which can lead to more variability in numbers.
I don't know much about honeymooning b/c we didn't have home monitoring yet when I was first diagnosed, so who knows what my BG's were. But, I'm sure other people on here can tell you how it worked for them.
P.S. I'm always higher on the weekends b/c I have the extreme urge to sit on the couch doing nothing but reading the paper. (: Good for you for being active on the weekends!
lol I would rather sit on the couch or just sleep all weekend. I mostly clean on weekends and have them do there rooms fold and put away their laundry. They go outside more too on weekends. During the week she just sits in class most of the day.
Yeah when we get a endo I am going to tell them what we want and to be trained to do it that way. I feel stuck with who we have and how she does it right now.
I was right to drop it too her 2 a.m. was about the same as the night before but her am was low 61.
I dropped her day time nph down 1 unit as well. about half way through her lunch I remembered to test her oops and she was at 96 ish. Her dinner numbers will really count today if I was right or not to drop it. She has only been normal twice for her dinner numbers so we shall see.
My husband and I are now struggling with knowing how much to dose. Our daughter appears to be honeymooning. We don't know for sure, but she has had a number of lows in the last several days. She is on Lantus (Long acting) and Humalog (rapid acting). We try to gauge how much to dose based on her previous reading. Her lows appear to happen in the evenings, but they have happened once or twice in the middle of the day. Lia, our daughter, sounds like your Riley. Very active on the weekends. During the week she sits in class all day and has her recess at the end of the day (go figure). We are trying not to dose her too high now and we are trying to figure out what foods interact best together. Whenever we think we have it right, she'll have a low and it's very frustrating. My biggest fear is for her to have a low during the night.
What is an endo? Being so new, I see things on the forums and often don't know what people are talking about.
We heard Dan Hurley on NPR. He was on Jan 5, but we just heard it tonight. Steve got his book from the library. I want to read it, too, but like you on the weekends am trying to catch up on laundry, house cleaning, etc. It never ends.
Thank you! Feeling like a dork right now, because of course! it is endocrinologist...we have one of those, too! We've actually not met him yet, but have met with everyone else on his staff. Our girl goes back on April 5th.
a few weeks after our son's diagnosis we had to lower his insulin a couple of times. Then we stayed at the same dose and had fantastic numbers til about 7 months in. That was due to honeymooning. then it was goodbye honeymooning, hello rollercoaster.
For the first few months of his life with diabetes he was in day care where the mornings were fairly active and on weekends we kinda laid around during the mornings (afternoons being active both places) and we had one insulin to carb ratio for breakfast for daycare days and another for weekends. We don't notice as much difference between school and home now, but he is only in school half days.
As far as making adjustments we have always been told to wait for about 4 days until there is a pattern as stress or illness or apparently so can any random thing or nothing. that being said if most of the days over a week have come in high (or low) they will also say to adjust the dose as it is happening most of the time. If the morning number is high (or the high numbers are appearing all throughout the day) we increase the lantus. If it is lunch, supper or bedtime we increase the insulin at the meal before.
Riley didnt really honeymoon much. Her doses went down and down and down then slap she had a day of us fighting lows the doses started going back up from there. Now she is taking 30 units of nph in the mornings and 10 at night. I am actually going to bump up her nph to 32 today her numbers have been way way to high. I am having some issues with the new syringes that will hold 50 units. They dont push as smoothly as the 30 unit ones. Anyhow leak back is the problem. I am waiting a good 10 seconds before removing it and still getting it so I have to find a way to slow down injecting her.
I'm not even really sure if this is a honeymoon. Yesterday she had some low numbers and by the evening before bed she was 82. So we gave her some food and before she went to bed she was 212, so we decided not to dose and thank goodness we didn't because at 1:00 am she was at 137. If we had dosed her, she would have surely had a low during the night. We aren't giving her huge doses like you are--our highest dose so far was 10.5 units. We don't usually have problems with leak back for humalog, just lantus. Our dosing method is a pen...can your doctor maybe switch you to that? We aren't sure what nph is? We've heard it before at our JDRF retreat last week during one of the lectures.
NPH is her long lasting but its more like a 12 hour not 24 like the lantus. Its junk we are going to switch her to lantus soon. We can mix the nph and her novolog so its just the one injection and we dont bolus meals right now. She just gets two injections perday. I guess they like to do that to avoid lows during the honeymoon phase. I am interested in the pens as well but I am not sure if our insurance will cover them its something I have to find out. Or we might just get the inject ease for her so she can start doing her own injections.
oh and nph does does different than nph. When we switch we will add her daily total of nph which is 40 and reduce the amount of lantus we give her by 20% then adjust from there. Oi so we will start her at or around 32 units of lantus. Her pancreas is not helping out at all anymore.
Just a thought...my endo never has me make two changes at the same time...change one and wait two days. That way you know what insulin is doing what. I am glad you are seeing more controlled numbers!
We've only been to one appointment so far and the Nurse practicioner said to change one thing and see how it goes. But maybe nph is different. Not sure. We changed the Lantus dose at the beginning because she was having such high numbers. They increased her from 5 to 6 and we saw her numbers come down. Now we are making the adjustments ourselves from meal to meal. So far, increasing her insulin to carb ratio from 1:15 to 1:20 has helped, but we are still seeing lows in the evenings.
we have not had one appointment yet with our NP. We go the 8th. We dont have a endo yet and I am not sure if we will. My insurance shows no peds endo's with in 100 miles of us taking new patients.
It sounds like you are really getting a hang of this! Congratulations. One thing I learned (probably about six months after dx) was that looking for patterns is really important, and that often patterns fail me, and i need to go with gut instinct.
If there are endos who are not taking new patients, it might be worth it to call in and beg. Most doctors have a heart and can keep you in mind, in case someone cancels an appointment. Good luck with your appointment in a week - I have also never met with an endo (except in the hospital at diagnosis, and i wasn't really in the right state to appreciate meeting him), but have met with NPs, CDEs, etc who work with him. They are lifesavers.
Thanks Ajax. I am also paying attention to how different foods affect her. Chips are horrible for her numbers so I would have to give her a tad more on meals that have chips. Which we do not have often but sometimes. Or her ratio would be different with those meals that have chips with them. However you want to word it.
We've only been to one appointment so far and the Nurse practicioner said to change one thing and see how it goes. But maybe nph is different. Not sure. We changed the Lantus dose at the beginning because she was having such high numbers. They increased her from 5 to 6 and we saw her numbers come down. Now we are making the adjustments ourselves from meal to meal. So far, increasing her insulin to carb ratio from 1:15 to 1:20 has helped, but we are still seeing lows in the evenings.
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You may have a different insulin to carb ratio for every meal. Might try to knock the supper ratio to 1:25 or 1:30 and see if that helps the evening lows. Also, we had to add a snack to my son's schedule on shots, because even though Levemir (similar to Lantus) is not supposed to have a peak, in him it kind of did. He had to have a mid-morning snack or he was low at 11 am. Didn't matter what is BG was at 9, normal or high, he was crashing low at 11 unless he had a snack at nine. You might need to add a bedtime snack to prevent something similar overnight.