I fear change

I just wanted to thank everyone for their comments. I truly appreciate all your advice and prayers.

I should have explained that one of the reasons we don't want to change insulin is because things are going so well right now. Except for a few blips due to illness, Elise's BG numbers have been really good. And for the first time I feel like I have a handle on things.

Going back to square one really frightens me. With NPH, I know what I'm doing. I have an understanding of how the insulin works. Switching means starting over and the memory of those first months are burned in my brain with such intensity, I actually start feeling sick to my stomach thinking about it.

I know that you guys all know what I'm talking about. Trying to find the dose that works and the completely crazy numbers that follow until you do. It's all too fresh for me to want to go back and do it again this soon.

And like I said before, what we're doing now is working and I'm enjoying that wee bit of normalcy in our lives. I think if we were not having good numbers on the NPH, I would be more open to change.

As for the pump, I just don't feel ready for it. One day; but not right now.

Elise does seem to be feeling better; she woke up with a BG if 155, but on a whim I checked for ketones and she was at .8. Weird. They were gone by 10:45, so I have no idea what that was about. Can you have a relatively normal BG and ketones at the same time?

I just don't know how to make it work...

I found out some sad news today. In August, the church we've been going to for the last 7 years is moving their 6:00 pm service to 5:00 pm. Which, for most people, is no big deal. For us it means we'll probably have to find a new church.

With the insulin Elise is on, neither of the other two services (9:00 am, 10:45 am) work for us. Elise gets her shot and eats breakfast around 8:20. We've tried making it to the early service and we could never get there before 9:15, and we're usually so frazzled and stressed out, it was hard to even focus on what the pastor was saying when we actually sat down.

The 10:45 doesn't work because Elise is on NPH, which peaks at around noon. The service ends about 12:15... most days. The other reason this service doesn't work is because I test Elise's BG around 10:30/10:45 and figure out her snack based on that number. This is NOT something I feel comfortable letting her Sonshine Pal do.

The 5:00 won't work because that is the time Elise eats her dinner. Our church will be doing a community meal after the 5:00 service (around 6:15), and Fred and I talked about seeing if we could move her dinner to 6:00 (just leave the service a bit early). But that doesn't work because it puts it too close to her bed time.

I just don't know what to do. Before Elise was born, we were very involved in our church, and know so many people there. It would be so hard to leave. Plus, we have been very blessed to find two people that stay with Elise one-on-one in the nursery (her Sonshine Pals; they alternate weeks). One is a very dear friend of ours, and the other is a nurse. Without them, we wouldn't be able to leave Elise in childcare at church.

People say that we shouldn't let this disease run our life, but our day with Elise is so structured (between meals, snacks, naps and bed time), it's almost impossible to change things up too much.

On top of this awful news, I have a feeling something is up with Elise. She had a total meltdown in the nursery tonight, and we just checked her BG a few minutes ago it was 315 with .4 ketones. She just had a vaccination on Thursday, could this be a delayed reaction? Something else completely?

Sigh, I hate this disease.

Vaccines and Diabetes

I'm a bad Mom.

My daughter is almost 22 months, and I'm still getting her caught up on her 12-month vaccinations.

All during my pregnancy with Elise, a little war waged inside my head... the should I/shouldn't I vaccinate debate. After I had looked through all the research, talked to Moms that I trusted, and questioned Elise's pedi-to-be, I settled on a compromise; I would vaccinate Elise on my own schedule.

And that's what we did. And it worked fabulously, until Elise's 12-month appointment. Because two days later, she was diagnosed with diabetes, and my whole world turned upside down.

At her 15-month appointment, I realized how behind we were, so I allowed them to give Elise one vaccine (I can't remember which it was). The next few days were horrible; her BG shot through the roof and she was irritable and didn't want to eat. Thankfully she was back to her charming self three days later.

At her 18-month appointment, I nervously agreed to her Dtap vaccination and awaited the the high BG and crabbiness that was sure to ensue. But to my surprise, there wasn't any. Huh.

On Thursday, I took Elise for her Prevnar (pneumococcal) vaccination, and besides a little soreness on her leg, and some irritability, it hasn't been that bad. Her numbers may be a wee bit high, but we're talking upper 100s/lower 200s.

We also experienced high numbers with the flu vaccine. I write all this to say; has anyone else experienced high numbers after vaccinations? Any stories to share? I'm curious how this has affected other kids with diabetes.

Welcome to Holland

A dear friend of mine, who has a chronic illness herself, sent me this. It resonated with me so much, that I wanted to share it here on my blog:

WELCOME TO HOLLAND

by Emily Perl Kingsley

“I am often asked to describe the experience of raising a child with a disability—to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip—to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands.

The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around … and you begin to notice that Holland has windmills … and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy … and they're all bragging about what a wonderful time they had there.

And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away ... because the loss of that dream is a very, very significant loss. But ... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”

[Note: Author Emily Perl Kingsley wrote "Welcome to Holland" in 1987. She has been a writer for Sesame Street since its earliest years. When her son, Jason, was born with Down syndrome in 1974, Emily and her husband Charles became activists, educating the public and developing resources to help Jason and other kids with special needs fulfill their potential. When asked why she thinks "Welcome to Holland" has had such resonance for so many people, she replied: “It's about a lost dream, any lost dream. Any change from the original plan. It says that it's okay to continue to feel the pain of the loss; that it's legitimate pain. It says that you're entitled to be disappointed, which then allows you to go on and enjoy what you did get.”]

Yes, yes, yes! How wonderfully this articulates how I feel, and has reinforced a very important point. I have already seen a few of the windmills of Holland; other, wonderful D-Mommas (and one very special D-Grandma!) out there that have been cheering me on from their very own corner of the internet.

As I walk through the tulips, I gaze in wonder at the precious beauty that is my daughter. A baby who has been dealing with this adversity before she could even walk, or got her first tooth. She has already been an inspiration to me. Who knows how many others will hear her story and be changed by it?

As for what other precious sights this trip will bring, who knows? I think the Rembrandt on the wall would be my very own daughter, driven by this horrendous disease, discovering the cure for diabetes.

At the age of 5, of course... because I can't wait that long!

Bed time snack ideas?

I'm in the market for some good bedtime snack ideas; reasonably healthy, and combine the carbs and protein needed to get Elise's BG up and keep it steady through the night.

The carb amount she gets depends on what her bedtime BG is, but she rarely gets anything above 8g of carbs. If her BG is too high, we give her deli chicken and some cheese. Her usual bedtime snack is goldfish crackers and banana, with some cheese for protein, but I want to change things up a little. I just need some good ideas.

She's on 2 units of NPH before bedtime, which brings me to another question... since we can piggy-back our Humalog in the same syringe as the NPH, is it reasonable to assume we could give her some H in her bedtime shot, so she can have a higher carb snack? Or is it a bad idea to give fast-acting at bedtime?

Thanks for any ideas you can give me!

A new record low

These are the types of records we don't like to set. Today Elise came in at a low, low 38 this afternoon. And what is so crazy is she woke up from her nap at 202 a mere 90 minutes earlier. And I even gave her a small snack too (only about 5g, but still!).

She was acting completely normal a few minutes earlier... we were playing on the floor and she was laughing away as I tickled her. We then went to get the mail, and when I saw yet another bill from an ER trip about 3 months ago (that insurance should have already taken care of), I decided a call to our carrier was in order.

My first warning should have been her asking for, then drinking a whole glass of water in one sitting (on a side note, does anyone else's child get really thirsty when low?). I was talking to someone from our insurance company when she started to whine. And she had that look.

So I got out the meter and continued talking to the guy as I checked her BG. When it came up as 38, I blinked a couple of times and was very tempted to shake the meter. Like it was one of those magic 8 balls, and I didn't like the answer it gave me. I told the person I was talking to that I had an emergency with my daughter and had to hang up.

And what is so amazing isn't how calm I was during the whole process, even though I felt like freaking out on the inside.

The amazing part is not how during all of this, the dog managed to throw up 4 times.

It's not even amazing how I managed to step in said throw up in my bare feet.

The amazing part is that as it was happening, I just shook my head and laughed. I didn't get mad. I didn't get sad. I didn't even get upset at myself.

It's this new thing I'm trying; don't let the D get you down.

I'm sure I will have my moments, but I'm hoping they will be few and far between.

In case you're wondering, Elise was an almost normal 81 when I tested her 15 minutes later. I was afraid that she would rebound really high, but came in at 180 right before bed. Nice.

All that I need

I went for my annual check-up with my OB/GYN on Monday. I know... fun, right? I was coming off a pretty rough weekend with Elise. Not so much Diabetes-related (although it always plays a role), but dealing with her sleep. Rather, lack of it.

Saturday night I went in to check her BG because she was a bit lower than we like to see her when we put her to bed (even after her snack and nursing). I went in around 11:30 to check her, and she slept through the whole thing; the opening of the meter case, the click of the lancet, the actual poke... everything. On my way back down the hallway, a floorboard creaked and all of a sudden she's wide awake, screaming. Seriously???

It took until after 2 am to get her back to sleep. My husband was at a movie with some guy friends, so I had the first shift until about 1:30. When he finally got home, I was about to lose it. I had had enough of the screaming and crying and just wanted to walk away and never look back (we have these episodes where she wakes up screaming about twice a week). He told me to go to bed and turn off the monitor; he'd take care of it. Yes, he is the best.

I think part of the problem is of our own making. When she wakes up screaming, we always go in and check her BG (or course), but we stay in there until she's asleep again because if we try to leave, she gets so worked up. And we're afraid of how that affects her BG. As long as we're in the room, she doesn't freak out. But if we try to leave before she's completely out; we're back to square one. This whole process usually takes 2 hours.

Anyway, back to my appointment. As soon as my doc asked how I was doing, I lost it. Just started sobbing. And I'm not really one of those people who cry a lot. I went on about how tired I was, how stressed, how completely spent I felt. It went on for about 10 minutes; she just listened.

And it felt wonderful.

I don't have too many opportunities to just vent like that. People will always ask me how Elise is doing, but hardly anyone says to me, "how are you doing, really?"

Of course, my doc asked all the right questions, trying to determine if I was depressed. I told her that it wasn't that bad; and it's not. I really have a lot to be thankful for; an amazing husband, a sweet and wonderful daughter, a roof over my head, a car to get me where I need to go, we can afford our daughter's meds, food in my cupboard, a fantastic group of bloggy friends, and most of all, a God who loves me.
I'll be okay, as long as I'm allowed to emotionally vomit for time to time!

Update on sugar-free meds

If you read this post, you'll recall that I decided to contact the makers of Infant's Tylenol and Infant's Motrin Ibuprofen about not having a sugar-free product for infants. So far I have only heard back from Johnson & Johnson (makers of Motrin).

They sent me an email about two days after I contacted them; asking me to call their 800 number so they could talk to me personally. I took this as a pretty good sign, but didn't call right away and even got a follow-up email. So I called them yesterday and think I confused the heck out of the customer service guy.

I explained my issue, and he started asking about what happened when I gave the drops to my daughter. I told him that the only time she had received the drops was in the ER when she had a fever. He asked me if I'd ever actually purchased Infant's Motrin.

Sighing, I explained that I don't purchase them because they don't have a sugar-free product which is why I'm calling in the first place. He really seemed perplexed that I didn't own the "product in question".

He then started asking about how much it raised her BG when she was in the ER, and I think I made his head explode when I tried to tell him that it's impossible to know how much the Motrin raised her BG, because she was ill at the time which makes her BG high, anyway. He wanted to know how I knew it affected her BG.

Sigh.

I explained that the flavouring in the drops had sugar, and that sugar will always raise my daughter's BG because she has diabetes (he already knew about the diabetes). I seriously thought I was going to have to explain to this guy all the inner-workings of the disease.

After a good 15 minutes of questioning, he mercifully let me go, promising that my email had been forwarded to the marketing department. So that's something... I guess.

FDA Issues Public Health Advisory Regarding Levemir Insulin

Just wanted to pass along this info a friend sent me. The press release was taken from the FDA's website. Elise isn't on Levemir, but I thought it was important to let people know. You can click here to be taken to the website.

The U.S. Food and Drug Administration has learned that some stolen vials of the long-acting insulin Levemir made by Novo Nordisk Inc. have reappeared and are being sold in the U.S. market. Three lots or a total of 129,000 vials of this product were stolen in all. These stolen insulin vials may not have been stored and handled properly and may be dangerous for patients to use.

The FDA has received one report of a patient who suffered an adverse event due to poor control of glucose levels after using a vial from one of these three lots.
The agency is advising patients who use Levemir insulin to:

1. Check your personal supply of insulin to determine if you have Levemir insulin from one of the following lots: XZF0036, XZF0037, and XZF0038. Patients can locate the lot number on the side of the box of insulin and also on the side of the vial.

2. Do not use your Levemir insulin if it is from one of these lots. Replace it with a vial of Levemir insulin from another lot. If you must switch to another brand of insulin for any reason, first contact your healthcare provider as another insulin product may require adjustments in dosing.

3. Always visually inspect your insulin before using it. Levemir is a clear and colorless solution.

4. Contact the Novo Nordisk Customer Care Center at 800-727-6500 for what to do with vials from these lots or if you have any other questions.

To check or not to check?

This is just an informal poll; how many of you regularly get up in the night to check your child's BG?

We only do it if Elise is below 150 when we put her to bed, if she had a lot of activity before bed that might cause her to go low, or we've recently upped her bedtime insulin. Or, of course, when "Mommy intuition" tells me to.

We don't regularly get up because #1, we don't correct for highs except at meal times, and #2, Elise has been pretty good at feeling her lows at night. She'll usually wake up and cry if her BG is below 70.

I'm just wondering what other parents do, and if I should be more vigilant.

More crazy weather

Whew, what a crazy day it has been here! I thought we were in the clear after the huge storm we had early yesterday evening, but it turns out that wasn't the case. We finally got our power restored around 10:30 last night, only to be pummeled throughout the night by storm after storm.

Thankfully they weren't as severe as the first one, but we had some more wind damage and a whole lot of rain. Elise woke us up at about 1:30 in the morning after some big thunderclaps. When we checked her BG it was a whopping 359! My husband settled her back to sleep and she stayed asleep the rest of the night; waking up with a BG of 157. Nice!

So this morning I thought we were done, and decided to go to an indoor playtime at our rec center. Just as I arrived and walked to the door, the heavens open up and the sky once more was lit up by the most amazing lightning display. You could not see for all the water that was pouring down.

Usually it only rains that way for about 20 minutes, then lets up. But not this time. It just kept raining and raining and I actually was worried that I wouldn't be able to go home, which REALLY freaked me out because I didn't bring food for Elise's lunch and her NPH was set to peak around noon. I checked her BG and she was 157 (two hours after her shot), which is a nice number, but we usually see numbers in the high 200s at that time in the morning. I rummaged through the diaper bag and found some cheerios for her to munch on.

Finally, around 11:30, it let up enough for me to run to my car. I could actually see some blue sky, but inexplicably the deluge started again as I drove home. I was amazed my car didn't float away! I made it home, checked Elise's BG and she was 61. Made it home just in time! Note to self; be better prepared next time and bring food, just in case!


some pics of our tree from yesterday's storm. Poor tree, I'm going to miss it!

Scary Evening!

But don't worry... it's not D-related!

We just had some pretty severe storms here in the DFW area; a tornado or two (or three!), 70+ MPH wind gusts, power outages, and a fallen tree. When we inspected the tree a little closer, we could see it was charred! YIKES! Lightning struck our tree that sits a mere 15 feet from our house!

Elise handled the whole thing like a trooper; cheering on the thunder and lightning throughout the storm. We had one tense moment when we thought we were going to have to high-tail to the bathroom to take shelter, but in the end all was okay. Save for our tree, of course.

And, due to all the excitement, a bedtime BG of 250. But at least she had a good time, right?

Tip O' the Week

When is a diet drink, not a diet drink? When the restaurant you're eating at has screwed up. Not that Elise is drinking anything but water these days, but I thought this was important to pass along.

Apparently, people that work in restaurants sometimes either just don't listen when people order a diet drink for their child, or the wrong drink container is connected to the diet line.

So what you can do is carry a package of diastix (test sticks that are used to test for sugar in urine), and put a drop of the drink onto the stick. If the pad changes colour, you'll know that there is sugar in your not-so-diet drink.

Crafty, no?

Question...

If I give Elise apple juice to bring her up from a low, will diluting it have any effect on raising her BG (either how quickly, or how high)?

The reason I ask is because I don't give Elise the full 15g of carbs for a low. I find it overshoots her and we wind up chasing high numbers later on. So, I usually give her about 2 oz. of apple juice. The problem is, she drinks it so fast that she starts screaming for more. I was thinking that if I do 2 oz. of water and 2 oz. of juice, it would take a bit longer to drink, but also fill her up a bit more.

But if it slows down bringing up her BG, or has an effect on how high it goes, then obviously I don't want to do it.

Anybody have thoughts on this?

Babies need sugar-free too!

As a mother of a small child with diabetes, there are many things that frustrate me about this disease. But the one thing I'm going to harp on today is the fact that they don't make sugar-free Infant's Tylenol or Motrin.

I'm not a huge advocate of drugging my child when she shows the faintest sign of being ill, but there are times when I need to give her something. Like in April when she was fighting a fever of 104. The ER doc told us we needed to give her something to bring down her temperature, but my choices were either the drops or a suppository.

I chose the drops.

Elise was also a late teether. She didn't get her first one until 16 months (which made the food situation very difficult). She's finally getting more teeth in, but seems to be in a great deal of pain. I try all the natural remedies. namely giving her ice, but I think the teething thing is why we're having so many sleeping issues lately.

I have noticed that Elise's BG does spike up a bit when given the drops. I know there aren't a lot of carbs in them, but Elise is also very small (she only weighs 23 pounds), and I find that even a few grams does make a difference.

I did write both companies and I'm waiting to hear back from them. I'm interested in what they'll have to say, but I'm sure it will be some canned response about how there just isn't a big enough market out there for them... blah, blah, blah.

It would just be nice to have a sugar-free option.

You know you want one, eh!

Just wanted to show off the Team Elise Canada shirt for this year's walk! My husband's family will be donning these beauties when they take part in the JDRF Walk for a Cure on June 14th. Thanks again to designer Josh Wiese for all his hard work! (click on the t-shirts to see a larger image)

The Chicken or the egg Conundrum

One of the things that really bugs me about diabetes is that I have no idea if the behaviour my 20-month old daughter is exhibiting is "normal" (for a toddler), or due to diabetes. When other Mom's see a hiccup in their kid's behaviour, it's easy to figure out if this is something most children that age go through, or if there's something else going on.

For me, it's always a choice between normal behaviour, diabetes, or something else. Here's my example:

Every day for the past five or six days, Elise has been waking up just 30 - 45 minutes into her nap, absolutely screaming. I don't have the luxury of letting her cry for a bit to see if she'll go back to sleep, so when I go in to check her BG, it's usually in the high 200s ( I do calm her down before I take it). Up until this time, she would sleep for about 90 minutes, and wake up generally happy with a BG anywhere from 90 to the mid 100s.

So my question is this, is she waking up screaming because she's high? Or is she high because she's waking up screaming? Or is there something else entirely causing both the waking up and the high numbers?

And is it normal for a toddler to have such a hard time staying asleep? She's definitely not getting enough sleep, and it's really starting to affect her disposition. When do I call the pedi about this? Or do I?

All her numbers are pretty normal across the board, otherwise. I am completely mystified by this.