Hang Low-ver

Thanks to Diabetic Danica for the term.

Angelina got sick a week ago.  Nothing major just a cold.  Yeah, right.  Every illness seems to be major when you have T1D.  She woke up last Thursday complaining of congestion and had a very low grade fever, but it was only a half day and she had her endocrinologist appointment anyway so I kept her home from school.  She just kind of hung out with me in my bedroom all day as we are having workers replace all our pipes and I have been sort of barricaded off in my bedroom while they are in and out of the house. Blood sugars were okay up until it was time to go to the endo and then, of course, she was high.

The endo appointment went long because I was going off about what has been going on with her school and that subject is something that just sets me off lately.  On the bright side, endo has agreed to attend a meeting at her school so we can get everything squared away and the endo can write orders that meet everyone’s needs, and the school nurses needs for everything to be phrased just so.

A1c result was lower than I was expecting since we have seen quite a few overnight highs lately – down to 7.2 from a 7.8 in November.  Turns out the overnight highs that I was attributing to growth spurt/hormones/delayed highs from dinner was really that her midnight basal rate was MUCH lower than her evening basal rate, and I never really noticed since her settings report (and trend lines) are all linear starting at midnight and running to midnight without looping back around.  So, I didn’t notice that midnight setting was so much very lower than the evening setting before it.  Dr also tweaked her carb ratios a bit and jumped her daytime ISF from 100 down to 75 (!).  I can’t really tell how well any of it is working yet though because with illness (even minor ones) comes the need for much more insulin and/or lots of highs, and then possibly lows and yo-yoing blood sugars from trying to figure out just how much extra insulin she is going to need at any given point during the day or night while she is sick.

The last time she had a cold she was still in honeymoon and we saw her insulin need increase by about 50%.  She was not on a CGM at the time so I didn’t feel really comfortable being more aggressive than that as I was afraid of her going low, especially at night.  Since she is on the Dexcom now (which is amazing, btw!) I can see what her blood sugar is doing every 5 minutes so I felt free to increase her insulin to my heart’s content and was able to get her into her target range for a good portion of the day.  I started her out with the 50% increase, but she was still up in the 300’s, so we went to 75% increase- still high.   100% increase (so twice as much insulin as usual) and still not able to get her below approximately 225.  Since the temp basal program on her pump only goes up to a maximum of 100% increase (or 200% of normal) I had to program in a whole new basal program for her.  To be safe, I programmed it at about a 50% increase and then did an additional temp basal on top of that.  About 70% extra at home, and a 20-30% increase when she finally went back to school on Tuesday.

Well, the problem with this is that a temp basal can only be set for a maximum of 24 hours and it doesn’t give an alert or anything when it’s finished.  On Tuesday night I forgot to reset it for the higher amount before bed so I got woken up at midnight to a “HIGH 300 mg/dL” on the Dexcom.  It was at that point that I realized I had forgotten to reset the temp basal.  So I did correction, set the 70% increased temp basal and went back to bed and figured the Dexcom would wake me up if there was a problem.

No alarms during the night, and at one point I woke up and her blood sugar was hovering around 175 and I though “Great! She came down nicely.  The correction should have finished by now so we should see an in range number first thing in the morning.”  And then around 6:45am, shortly after David had left for work I woke up out of a sound sleep and grabbed the Dexcom.  It said she was 87!  Now, 87 is a little below range for her, but still a perfectly acceptable number.  It was just a little surprising to see her blood sugar had continued it’s downward trend so many hours later still.

I got up to go check her blood sugar and meter says 60.  Okay, well, that’s a bit unexpected.  I try waking her up and she just kind of pulls the blanket tighter.  So I grab juice since it’s the easiest thing to try to get a sleeping child to swallow.  It took a little coaxing but she finally drinks the entire juice box and we settle in to wait.  Keeping an eye on the Dexcom I’m starting to get a little concerned because it’s going down instead of up.  I have seen the Dexcom have some trouble coming up from low readings to I am just hoping that it’s that.  But, after the 20 minute wait I check her BG again and it is now down to 53, 1 point off of the 54 that Dex is reporting.

20140213-101935.jpgWell, it seems the juice didn’t work so well…  She’s still sleeping but maybe I can get her to chew a few glucose tabs.  I grabbed another juice box, just in case, but tried to wake her again.  I ask her if she will chew a glucose tab and she nods so I put it in her mouth and she makes an initial chewing motion, but then nothing.  When I tell her to chew she just looks kind of bewildered so I say “Okay, let’s try more juice.” and have her spit the unchewed glucose tab into my hand.  Waiting game is on again and I start to see the Dexcom finally creeping up…72, 83, 96. Yay! It seems we’re in the clear.  Finger stick reads 124, and Dexcom is only a few points behind.

Of course now it is actually time to get up for school.  We go through the usual “I don’t want to wear that.  Why aren’t XYZ pants clean? (maybe because mom isn’t a mind reader and didn’t know you wanted to wear them today?)  I don’t know what I want for breakfast”, etc.  And then she says “Why do I feel so terrible?  I have a headache and I feel sick to my stomach.”  I said, “Well, you were low.  You just had 2 juice boxes and you probably need to eat something.”   She just blankly stares at me and says “I was low?”  She then notices the glucose tab, in pieces, sitting on the entertainment center and says “What’s that?”  To which I reply “That’s the glucose tab you wouldn’t chew.”  She had absolutely no recollection of being low, or drinking juice, or not chewing the glucose tab, even though this had all happened just 30 minutes before.

She says “I feel terrible.  Can I have ibuprofen?  Is this what a hangover feels like?”  And, thanks to Diabetic Danica, I replied “You’ve got a hang low-ver”.

I don’t know what it feels like to experience hypoglycemia in the way Angelina does.  I’ve had a handful of hangovers in my life (usually from wine), and I can’t help but feel incredibly sad that at 10 years old my daughter knows what that feels like, and not from alcohol.

Her blood sugar levels were amazingly in range the rest of the day, except for another brief excursion into the upper 60’s after lunch, which then resolved itself (she didn’t even notice it until I said something after reviewing her Dexcom when she got home from school).  So, for now, I have discontinued the extra temp basal, but she is still on the basal profile that is giving her 50% more insulin than usual.

Today she is on a field trip.  I am hoping that everything goes smoothly and she has a great time.  Next week: school meeting with the principal, district nurse and the endo.

Apparently It Took Diabetes To Help Me Make Friends

I am going to have to finish Angelina’s diagnosis story later.  So much has been going on that I want to focus on more recent events for now.

When we were in the hospital our diabetes educator had me fill out a JDRF form to sign up for the family mentor program.  It was optional, but I figured it couldn’t hurt and if it didn’t end up working out we wouldn’t be any worse off than we already were.  I am SO GLAD that I filled out that paper!

Angelina had her first pediatric endo appointment last Thursday and her dr asked what kind of support system we had in place locally and I told her it was pretty much just us.  Me, my husband and Angelina.  We don’t really have any friends or family in the area.  My mom did live locally, but recently moved about 5 hours away and while she usually has great intentions a lot of times I just get frustrated with her off the wall advice.  Anyway, the dr said that she knew someone who was involved with a local support group and she would get back to me with the person’s information.

Later that evening I got an e-mail from the dr with the person’s facebook contact info and I was able to add her.  I didn’t hear anything that night, but I figured not everybody lives on Facebook like I do. 😀 I looked around her page a bit to see if there were any groups or pages that were obviously T1 related that were public that I could browse through in the meantime.  I found our local JDRF chapter page and went through their events and discovered they were having a parent’s coffee the next evening so I signed up to go.

Then Friday David and I went out to lunch and my phone rang.  Turns out it was our mentor mom from the JDRF program and she wanted to touch base with me and invite me to a JDRF parent’s coffee that evening that she was hosting. (The same one I had already signed up for on facebook.)  When I got off the phone with her I realized that the other woman on facebook had sent me a message with the same invite for coffee, but that she wasn’t going to be able to make it and also told me to contact her friend, who happened to be the mentor mom I was just on the phone with!  Talk about serendipity!    It was just one more of those weird moments since the beginning of this journey where there are just so many coincidences or the timing on things is just uncanny (I’ll get into that more in a later post).

We went to the coffee and met up with our mentor mom (I’ll call her C).  We were the only ones there for a little while, then another mom from the group showed up as well.  It was a nice cozy little gathering and it felt really good to talk and ask questions of been there, done that moms. Angelina was pretty well-behaved but was getting antsy so she and David took off for a little while and went to the sporting goods store to get a new tube for his bike tire.  We ended up being at the coffee shop for almost 2 1/2 hours total.  It was another serendipitous meeting though because there is a local group for type 1’s who organize a lot of outdoor events like hiking, kayaking, etc and they were having their monthly hike on Saturday.  David (hubby) has been trying to get me to go hiking for a few weeks now but I am not a huge fan.  He wanted to go hiking this weekend and I wanted to meet more T1 parents and have Angelina have the opportunity to meet some T1 kids so we decided to go.  Again, the timing was uncanny because David was planning on hiking over the weekend and this group just happened to be having their monthly hike the next day.

I went home and found the outdoors group on facebook and signed us up for the hike.  Saturday was pretty overcast and a little chilly but we decided to go for it anyway.  It ended up just being us and two other families, so 6 adults and 4 kids total.  It was honestly perfect!  Of course all the other kids were boys and 2 of them were older than Angelina (I think they’re both 11) and 1 was younger than her by a couple of years, but she still had a great time.  It was pretty interesting to see how her blood sugar levels changed so drastically with the exercise too.  Part of the group “ritual” is all the t1’s check their blood glucose before starting the hike so if they’re on the low side they can eat some carbs beforehand so they don’t get hypoglycemic during the hike.  Well, in anticipation of her burning off a ton of sugar I had given her about 15-20 uncovered carbs(meaning I didn’t give her insulin for them) for breakfast about an hour before hand.  Her BG (blood glucose) was 351 before the hike!  I knew it was artificially elevated because of the uncovered carbs so we were good to go.  We did a pretty gentle trail through some foothills and it was about an hour and a half total time there and back.

After the hike we decided to grab some lunch downtown near where the trail was.  When she checked her BG it was 89!   Of course, part of that could be because she is in what is called the “honeymoon phase” of her diabetes.  Basically the beta cells in her pancreas are slowly being killed by her immune system, and in the beginning when her blood sugars were really high the beta cells that are still alive get so overwhelmed with the glucose in her system that they stop working for a period of time because they just can’t keep up. (At least that is my understanding at this time).  After a couple of weeks of being on insulin and her bg levels getting back down to a normal level the remaining beta cells start working again, except she’s also getting artificial insulin so it’s more likely to see lower numbers and have hypoglycemic (low blood sugar, less than 70 mg/dl) episodes because you can’t really calculate how much or when the beta cells are going to produce insulin.

Luckily her dr had told us to watch out for it and that we might have to lower her insulin dose around now, so we were prepared.  Her BG was under 100 all of Saturday (with the exception of the 351 reading from uncovered carbs) and then only slightly higher on Sunday so her dr emailed me Sunday afternoon to lower her dose of Lantus (which is a long acting insulin given once a day before bed and is supposed to mimic the natural release of insulin over the day, to keep bg level not accounting for food consumed).  She is already on a pretty low dose of her fast-acting insulin (Humalog) as well, so we are just keeping a close eye on her numbers and I have been in email contact with her endo on a regular basis so if anything needs adjustment, we’re on it!

Then Sunday there was another JDRF event (this one mostly for the kids) at a local trampoline place.  We almost didn’t get to go because we were cleaning house in preparation for family visiting in 2 weeks and Angelina also had some homework from earlier in the week that needed to be completed.  Her ADHD was in high form which means she looked busy for 2 hours, but got only a minimal amount of work done.  I finally set down with her when it was time for lunch and told her she needed to make up her mind about whether she really wanted to go or not because if we were going I was going to give her less insulin so she wouldn’t get low while we were there, but if we weren’t then she needed her normal amount to prevent a high.  She did her normal sulky thing and finally said that she was really going to try to get everything done.  So I gave her some uncovered carbs and let her finish her work.  The event started at 3pm and was about 15 mins away from home.  She got done with her work at 3:30pm after putting in supreme effort.  So she and I went and had a great time.  Her bg was around 165 I think on the way there so I gave her a glucose tablet to bump her up a bit because I knew she would rip right through those carbs jumping on a trampoline and running around for an hour or so.

She also ended up eating an uncovered sandwich (which was maybe 30-40 carbs) around 4:30pm which also was pretty much completely burned off by the time we left.  She had a great time though and seemed to really hit it off with C’s daughter, which C and I had discussed probably being the case.  The girls are a month apart in age and just seemed to have so many personality traits in common I figured they would either end up being best friends or worst enemies, lol.   I was glad to see that so far it seems to be the former and not the latter.

I also got the chance to chat with C a little more, although it was pretty crazy in that place (as you can imagine) so mostly small talk.  I also briefly met a few of the other parents, although I don’t think I could name them.

All in all, we had a great adventure filled weekend and I am starting to feel like I might actually make friends here in CA.  And not just friends, but friends with kids who are like mine and can relate to what I’m going through, even though we may not be the same age.