Lila is four. Caleb was just shy of his fourth birthday when he was diagnosed. In both appearance and personality, Lila tends to be more like Caleb than older brother Colin. For some reason that has always made me think that if either Lila or Colin were to develop D, it would more likely be Lila. Not logical, but it’s what I have always thought.
Driving home from preschool the other day, out of the blue Lila says, “Mom, can I have some milk?” Lila has always enjoyed milk, but with her meals. She has never been one to drink much beyond that, and if she does, it’s water. For about a month before the light bulb went on that something might be up with Caleb, he requested milk. It should have been a reg flag, but I was clueless. “Icy, icy cold milk,” he wanted. Visions of him asking for it are etched in my memory because at the time, I just thought he was growing. But it was a telltale sign of diabetes that I completely missed.
So when Lila repeated Caleb’s request, a pit formed in my stomach. I started to think about the other symptoms. Frequent urination – nope, not at all. Lethargy – no way. Weight loss – I really don’t think so.
But I couldn’t get beyond the taboo milk request.
We arrived home, unpacked her backpack as usual, and sat down at the kitchen table. We’ve done it before, so it’s not a big deal – I ask Lila if I can check her sugar. “Sure Mom.” I prick her finger, the test strip soaks up the blood and the five seconds of wait, which seem like an eternity, begin. I’m telling myself this is not a big deal. She’s just thirsty. She has no other signs.
Then the number pops up. 257. 
Well that was not what I was expecting. “Lila, let’s wash your hands.” “Okay mom.”
Another prick, another blood soak – error. Another prick, another blood soak – error. I’m trying not to panic. But I am now thinking of the logistics of calling my husband to come home. Do we go straight to the hospital or call Caleb’s endo? Who’s going to get the boys from the bus stop? Can we get her pumping right now? Will insurance drop us with two diabetics? And most of all, the flood of memories of Caleb’s diagnosis comes back to me in a wave. Lila is starting to get anxious with the pokes and now they hurt. How am I going to to get her through what lies ahead – shots, insertions, more finger sticks. I’m looking at her in the eyes, trying to stay calm, but my heart is breaking.
Another poke, another soak. 168. Not what I was hoping for.
I finally give her the milk she requested and the cookies from lunch she didn’t finish at school. We go about our normal routine although I have little ability to process thought. We are communicating, but I have no clue what I am saying because I’m still thinking about the hours and days and weeks and years ahead. I give it about fifteen minutes, pull out a completely different meter, and we do another poke and another soak.
104.
That’s more like it.
Just like that, life resumes to normal. My shoulders drop a little from the relief. I give Lila a big hug and she is oblivious to the future I envisioned for her over the last twenty minutes.
Just to be sure, I checked her sugar later that day, 84 and the following morning, 82.
All she wanted was a glass of milk.
This is Caleb... 
Just before diagnosis my daughter was drinking milk like it was going out of style. She’d wake up 30 minutes after bed time wanting another glass and would cry (unusual for her) if I denied her. When she drank a half gallon in 24 hours, I KNEW something was wrong and called her pediatrician.
Recently our two-year-old went through a phase of drinking a lot of milk. Wanting a second or third cup at mealtime. I was so nervous. But I think it was just a growth spurt.
I hate feeling like I’m waiting for the other shoe to drop.
omg sooo scary, happened to us with Cole, freaked me out for 2hrs and then it was just some fluke with him eating A LOT of fruit, i can feel your pain!!!
I know the feeling. It wasn’t that long ago that I was testing my 3 year old, scared out of my mind.
Your results seem a bit off though. I don’t want to scare you any more than this episode, but a 250 and even 160 for anyone seems too high, especially before any food. Maybe the first one at 250 was a meter issue, but is this how it can start? I’m absolutely no MD, but if the pancreas functionality slows down, like in my case, the body starts producing less and less insulin until you are forced to supplement with injections/pump.
I would definitely keep an eye on your little angel and try a few fasting tests.
It’s probably nothing and just thinking about chocolate cookies dipped in icy cold milk. From talking with you, I know you are all over this and then some.
((hugs)) I can’t imagine what it’s like for you and your husband.
Oh wow how scary!!!! It’s weird, Tristan was diagnosed at 16 months. When Connor was 16 months, I seemed like I was seeing signs everywhere. He was drinking a lot, peeing a lot, I had nightmares of him being diagnosed…. but he was fine. And hopefully he will remain fine!
I agree with Tony however. With those numbers, I would call Caleb’s endocrinologist just to run it by them. Just to put my mind at ease.
Well a) Your daughter is just absolutely gooorrrgggeeouuuusss!!! And her scarf looks just like the one I’m wearing on this unreasonably chilly day…. 🙂
b) Tony is right – keep an eye on her sugars… Better safe than sorry. Julia over at Major Bedhead had some concerns about one of her younger daughters not long ago, and got some wonky readings – that in the end turned out to be nothing.
c) Let yourself soak in that relief with the knowledge that everything is more than likely fine, fine, fine!
– Nicole
Hi Nicole, Thanks for your comment! I was thinking about Major Bedhead during that time and it actually helped knowing that someone else experienced something similar and all turned out well. We did another check today and it was 102. We are keeping a watchful eye though (as always). 😉
ug…I have totally been there! oh Lorraine…that must have been awful! it is hard not to be so sensitive to all of it. i check my other two now and then too…
i’m so glad Lila’s numbers tested in the 80s later! you are such a good mom…keep keepin’ on, friend!
Hugs and lots of loves~
Oh my goodness, Lorraine. I can only imagine what all you must have been feeling. I wonder how many times I will make my daughter-on-the-way test her blood sugar or second guess how much she’s peeing – just out of fear that I could be blind to a sign. Perhaps I’ll never have a diabetic child and perhaps you’ll be spared another diagnosis in the family, but I am consoled by something my husband said the other day after I’d gone to interview a prospective pediatrician – the fact that, of all people to help a child who does develop type 1, who better than someone like you (who already knows the ropes) or me (who has been through everything she’ll go through)? I imagine that if one of your other children faces diabetes, at least they will have Caleb’s (and your) shining example to help them through it.
I’ve gone through the same things with my kiddos. It’s always scary. Always.
Hi there. We had many of those pits in our stomach with our 7 year old daughter since the time that our 5 year old son was diagnosed 2 years ago. They were always false alarms… until August. Molly seemed unwell and low energy. After a couple of days my husband and I did the late night poke on her, hoping to make ourselves feel better. She was super high and we knew right away what we were in for. It has been pretty terrible – but not like it was the first time. She was already used to living in our home full of insulin needles and test strips. She had even been counting carbs for her little brother! We only had to spend one night in the hospital (instead of 7 with Jack), and I (and my husband) was able to do every one of her glucose tests and insulin needles in the hospital.
She is managing really well, as is her brother. I’m just really sad for her and wish that no child had to go through the daily regime that these little type 1 kiddos have to go through.
Erica Morris
Canada
P.S. Lorraine, I have often referred to your videos and wonder, does Caleb test his glucose on his forearm exclusively? We started alternate site testing 6 months after Jack was diagnosed as finger pokes really seemed to hurt him – he just had his little 3 year old fingers back then! I also test Molly this way – exclusively. I don’t tell the docs anymore because they are absolutely aghast, and therefore I always feel like I am doing something I shouldn’t. However, I could test 50 times a day on their forearms without complaint so really feel that I can manage the disease better this way – and I always bear in mind when I test that there is a potential lag time. What do you think? Thanks so much
Hey there–
Wow your post resonates with me. My 6 year old daughter Sydney was dx 2 years ago. My now 4 year old gets periodic elevated readings. A couple nights ago she hovered in the 170s and 180s for several hours. Last night she posted a 204. I don’t know what the future holds for us but we will just keep our chin up and keep swimming. She had a baseline A1C done at the beginning of Jan. It was great at 5.3. Yesterday we had another one done–2 months later–It is still fine but has gone up to 5.6. Soooo we wait. Thanks for this post.
I have been there. I am always there with Synsyre. Sometimes I need to pause, breathe and realize maybe its NOT that. But we are mothers, protectors, and its in our nature to I dont want to say to assume the worst but worry. And honestly better safe than sorry. Thank you for sharing this and making me feel “normal”…
Sidenote: I cringed when I looked at the meter..10/21 was when Justice was diagnosed…
Awww that so scary! when in turn diabetic i was very dizzy i couldnt stop drinking pop i lost balance and i was sleeping on the floor so much my mom had to carry me to the hospital i was crying in pain i wished it would get better but……no cure 😦 😦 😦 :(:(:(.! at least its over and done with! TO lila, caleb and the mom
I was on the edge of my seat reading this. It has only recently hit me that there is such a huge knock-on effect for the parents out there with more than one child. We have freinds with four and the eldest (and the father) has Type 1. The Mum is just always on the lookout for the next one to feel thirsty. Let’s hope it’s nothing. Love to you and the family and apoogies for not managing to comment much.
Thanks for sharing your story. I worry about Ellie’s little brother quite a bit. He was sick a couple of months ago and began to sleep too much…one morning I decided that something was very wrong with him, that I was missing DKA or something. I tested him and a 40 came back at me? Imagin my confusion! I tested again and got a 42…What tha??? NOT what I expected. I totally freaked out and called the Ped. Gave Jack cookies and milk and began testing and testing until he reached 80 about 3 hours later. All I could think was: great, one with no insulin and another one with too MUCH? Nothing but confusion has come of Jack’s little incident as of date. He’s had a bunch of blood tests covering all the different hormones, etc. All appear fine…No one can tell me how his body let him get that low…so I wait. But I will tell you, in the back of my mind almost always now I wonder if it isn’t the little thing that starts, where things get wonky long before the damage is full blown…The virus that starts the confusion? I wish they could pin down the cause, the trigger. Because even if they can’t cure it, or prevent it, we could avoid the sudden news of it. The meter and finger poke randomly done on a hunch…that damn feeling you had when the meter told you 250. Ugh. Loves and hugs from us to you! XXXOOO
My daughter was diagnosed one year ago at age one. Her 5-year old brother is part of a clinical trial for a diabetes prevention treatment. This treatment seems very promising. There is a vaccine approved for use in the U.K. I know it may be expensive, but I think everyone should try to be part of a clinical trial if possible, or if they can go to the U.K, try to get the antibody test. So far my son has tested negative for the antibodies, thank God, but I want to see if my nieces and nephews can get checked as well.