Stacey Simms Blog

Dream a Little Dream / Diabetes Snapshots

Finishing up Diabetes Blog Week - and combining the last two subjects into one.  Dream a little dream - life after a cure. & Diabetes snapshots. 

Thinking about a cure is odd for me.  I'm not the one with diabetes - my five year old son is.  Because Benny was diagnosed at 23 months, we don't really talk about a cure. I think that would be hard for him to understand (he just got the concept of the day after tomorrow) and I don't want to get his hopes up.  Right now, when we talk about raising money for JDRF or Walking for a Cure, we talk about making diabetes easier to manage, and having less pain and poking.

To be honest, I have always had his Bar Mitzvah date in my head as a significant milestone.  I'd love to at least see the artificial pancreas by then (mark your calendars, Benny will be called to the Torah in 2018!).  And by the time he goes to college, I'd love for him to be able to sleep late and eat poorly as his friends will likely do.

 (Dude can't wait for his snack!)

Here's a small part of my dream for a cure: that we won't have to go through crazy ups and downs like we did this past weekend.  I hate when Benny feels bad and I often feel that, as his caregiver, I caused it.  I know, we can just do our best, but you talk about Mommy guilt! I would like (selfishly) to see that go away. 

Saturday was hot and late in the afternoon the kids and Slade went outside to play.  When Benny came in hot and sweaty, I gave him a drink and an ice pop, and a bolus. I had just checked him before he went out and didn't think to do it again. Little while later he wasn't feeling so well. Hmm, wonder why?

He wanted to eat everything in the fridge (lows can make you very hungry) so we went from a snack right into dinner. But we rode the low pretty well and he never went above or below the 100s - which is great.

Next day - we were up and out early for a charity project - great morning of outside yard work to help Hospice House. The pump starts beeping... because we forgot to refill the insulin cartridge. I always have stuff with me, so it should have been easy.  However, we're testing the Animas inset right now and I only had Cleo tubing with me.  A brief moment of panic, then I thought to re-use the inset tubing and just change out the cartridge. Slade said something to me about that, but I didn't tune him in. I was just feeling mighty clever about MacGyvering the thing. 

Especially after Saturday's crazy low, I was a little worried - Benny was shoveling mulch, pulling weeds and running around a lot.  I let him have some full test lemonade and assumed we'd be in the low 100s.  But when I checked him, this is what we got:

Over the next hour I checked the "click" (what we call the inset connection to the tubing), the inset itself and thought about what Benny could have eaten.  Finally, I took the pump off and checked the tubing itself.  It was full of air! There were a few drops of insulin, but not much. There weren't any bubbles in the cartridge, but apparently there was a little pocket of air in between the new cartridge and the old tube.  Grrrr. I re-primed the tubing and we were back and pumping.

Later in the day I remembered Slade's comments as I had changed out the cartridge. He laughed when I asked him about it.  Turns out, he was trying to tell me to watch out for air bubbles in the old tubing. It was perfectly logical to him that it could happen. Have to say, that never occurred to me! So exciting when diabetes teaches you something new (did that sarcasm come through?).

A Body In Motion...(will probably go low)

Day 5 of Diabetes Blog Week - we're talking about exercise.

If you ask Benny what his favorite sport is, you'll get a different answer every day. Football, baseball, soccer, swimming, golf. A typical 5 year old, he never stops moving. Benny is full tilt boogie from the moment he wakes up to the moment he flops back into bed at night.

Of course, some activities are more strenuous than others, so we try to run Benny's bg a little on the high side when he swims, for example, or anytime I know he's going to be playing hard. It can get a little tough, not right after the exercise, but overnight. He's gone low a couple of times after swimming all afternoon, but usually we're able to anticipate it.

Sometimes we do have to laugh. Benny was diagnosed at 23 months and I was very fearful of lows, especially since he couldn't articulate how he felt.  That was me at playground yelling, "You can't play anymore unless you eat this cookie. Get over her and Eat This Cookie!!" The moms probably thought I was nuts, but the other toddlers were totally jealous.

I can't wait to see what sports Benny enjoys and decides to concentrate on as he gets older. He keeps telling me football. I'm hoping golf.  Either way, I'll be cheering him from the sidelines - and you know I'll have a package of cookies in my purse. (You never know!) 

To Carb Or Not To Carb?

Still going with Diabetes Blog Week. Today's topic - food!

Last week at Carowinds, I used my phone to look up the number of carbs in a corn dog.  That tells you a lot about the way my family eats (and also about why I love my new phone). The fact that I let my son have a corn dog and that I had to look up the carbs. It's not as though that's an every day food for us! But I bet you would never know by our diet that Benny has diabetes.

 (56 carbs, by the way - although I didn't believe that. That's no low-fat Hebrew National beef frank in there.  I went with 70 carbs and a one-hour combo bolus. Perfect. This time.) 
 

Early on we learned that a low-carb plan doesn't work very well for a little kid with diabetes.I wrote about our attempt to put a two year old on the Atkins diet here. Upshot: bad idea. In an attempt to keep his carbs and insulin injections down, we started eating all sorts of high fat meat and cheeses that we'd never eaten before. Yuck.

We do like to try to have the whole family eating the same kinds of food, the same meals and snacks. Right now, Benny's favorites include any fruit - especially watermelon and strawberries. He loves broccoli and carrots, roast chicken, turkey meatballs, hard boiled eggs and grilled cheese.  Because we live in the real world, he also loves hot dogs, tater tots, cookies, brownies, frosted flakes, milkshakes and ring pops. And don't forget banana splits!

So, yes there are treats and of course there are limits.  I have an either or policy for cake and juice boxes at birthday parties, for example. My friend are always pleasantly surprised when they ask if they should provide a sugar free alternative for Benny, and I can so no (although it would be nice if someone served water or even flavored water once in a while)

We also own an Italian restaurant and my husband is a great cook.  We love pizza and it's fun to have the kids try calamari and eggplant parm! (Yes, that's us, Rotelli Pizza & Pasta, corner of Carmel Rd & 51 in Charlotte.) 

Overall, I still can't believe the flexibility of eating for type 1 diabetes. It's not at all what I expected and I am so grateful for all the research that's come before to lead to insulin pumps, etc.

We do have a new food adventure for us coming this fall: school lunches!

Diabetes Blog Week - Your Biggest Supporter

Continuing as part of Diabetes Blog Week...

I've written about some of my diabetes heroes before, here and here. It's fun to look back on both of those posts - they were written in the first year after Benny's diagnosis. 

It's been three years, now, and I have to say my biggest supporter is my husband, Slade. I hope I'm his.  We are very much a team - and not just symbolically.  Usually with a chronic condition like diabetes, one parent ends up taking the lead role.  That's not the case for us. I'd like to say it's because we're such a modern-thinking, sensitive and caring couple.  Truth is, it's because our schedules are crazy!

I work very early morning hours (I leave home at 4am) so he gets the kids every morning. Slade owns Rotelli, an Italian restaurant here in Charlotte, so often he's there in the evenings. Sometimes we even see each other.

How does he support me? My favorite is when I get an email or a text with "you're a machine!!" telling me about how I took care of this, that or the other. We also work hard to have a sense of humor and a realistic attitude about type 1 diabetes - and we try to talk to Benny about it in the same way.  Slade also backs me up - and often leads the way when I'm frustrated.

Slade truly does the heavy lifting: Benny likes to be held upside down sometimes to change his inset. At 65 pounds and growing, he's getting just a little bit too big for me to do that.  Okay I never did it - some things are just for dads!

(Slade & I show our support for JDRF at last year's Charlotte Gala. We may be as lit as those glow sticks!)

Making The Low Go

Day two of Diabetes Blog Week. But before I go any further, I really have to thank Charlotte Parent Magazine for a great article this month on kids with type 1 diabetes. It was nice of them to feature us, but I'm really glad they talked to our doctors. You can read it here.

Today's posts are supposed to explain how we treat low blood sugar. Here's what I tell my kids' friends when they come over to play. In my house, juice boxes are medicine.

Benny was diagnosed at 23 months, and we didn't give our kids juice boxes pretty much as a rule (I have a daughter, three years older than Benny). But the little ones are 15 carbs - perfect for treating most lows, and they act quickly on Benny.  We tried sweet tarts for a while, but he always wanted one when he wasn't low!

 

You can see that I keep ours up high, out of the kids' reach, although they never try to drink them anymore.  After 3 years, they know! That grape one is clawed open, 'cause I did after Benny woke up low at 3am Sunday night. Oh, I mean Monday morning. Lovely.

A Day In The Life... With Diabetes

I just found out about Diabetes Blog Week. More than 100 bloggers with a different subject every day.  How cool is that? Today is "A day in the life.. with diabetes." As you know, for us, it's a day in the life with a 5 year old with diabetes (diagnosed at 23 months). So here goes:

Sleeping. Hear a noise. Up. Check? Yes, just in case. Good number. Back to bed.

Breakfast. He checks his own blood sugar.  Feel proud that he can do it. Feel sad that he's five and he has to. Feel guilty that you ruined feeling proud with feeling sad. What? Oh, breakfast.

Count the carbs, give the bolus.

Off for a family day at the park. Pack extra test strips and lancets. Driving there, realize you forgot extra pump supplies, just in case. Remember you stashed a couple of insets in your purse last week when you had to drive to preschool because his came out.  Feel grateful that preschool takes such good care of him. Worry what will happen this fall when he goes to Kindergarten. Remember other kids in school with type 1 and tell yourself he'll be fine. Deep breath, feel better. Realize extra insets are in your other purse.

Test bg. Eat snack. Bolus.

At the park, see a child with a disability (or with dangerous food allergies, or hear about a child with cancer). Feel thankful that diabetes management has come so far. Feel terrible and guilty about feeling thankful. Feel sorry for the other family. Feel stupid, 'cause you don't want anyone's pity. Settle on: everybody's got something.

Laugh and enjoy the time with your family.

Test bg. Eat. Look up carbs in ice cream treat you've never seen before. Spider-Man has gumball eyes?Bolus. 

Test bg.

Playing hard, number comes up low. Juice box - back in action. Should we suspend the pump for an hour? Remember that worked really well a while back.  Remember it didn't work so well that other time. Wonder if he should have an extra cookie. Will test again in 20 minutes. Eat the other extra cookie yourself.

Test bg, test bg, test bg.

Are the numbers going up this week? He's growing again - look at those pants! Probably have to adjust basal. Call the doctor tomorrow. Feel grateful for our incredible doctors. Hope they think we're good patients. Remember the fit he pitched when they drew blood last year? Remember they need to do that again, next visit. Mental note to ask husband to take him. Erase the note, want to be there to hold him while your heart is breaking.

Home. Eat. Bolus. Bedtime. Test.

Sleep. Dream of a cure.

Misinformation - What A Pain

I'm so happy to hear Bret Michaels is out of the hospital, but troubled by some of the reports. Specifically, that there was something about the Celebrity Apprentice contestant's type 1 diabetes that kept him from getting pain relief.

I'd never heard diabetes can interfere with pain relief and, as a mom of a little boy with type 1, it made me worry.  What happens if Benny - heaven forbid - ever needs that kind of help? Will he have to suffer?

Here's what I read in People Magazine:

"In addition to the side-effect hyponatremia, which can lead to seizures (Michaels's doctor said he has not had any), the rocker has been suffering from back pain and increased spasms – because as a diabetic, he has not been able to take certain medications. (Doctors say they'll) usually give patients steroids to lessen the pain but they can also "make glucose levels go out of control so unfortunately [Bret has] had to suffer."

I know, it's People - not the Journal of the American Medical Association - but millions of people will see it and take it at face value. I read the same thing in some other publications and in blogs, so I emailed my fabulous pediatric endocrinologists for their take.

Dr. Mark Vanderwel wrote back:

"The only thing I can think of which could even remotely limit pain relief is if he already has microvascular complications from poorly controlled T1DM, but even then I don’t know how this would limit pain relief.

If you’re talking about glucocorticoids like prednisone or hydrocortisone, the answer is yes, if absolutely needed.  Glucocorticoids will cause significant insulin resistance, and people with type 1 may find that they need to double or more their insulin doses while on glucocorticoids.

But Dr. V was clear, there is no reason to assume that type 1 diabetes means pain can't ultimately be treated.

His associate, Dr. Mark Parker's response was a little more direct. I can't print his actual wording (this is a family blog) but he called the report erroneous and mistaken. Just with more, um, colorful language.

Did I mention I love my docs?

 

Type 1 TV (follow up)

I still haven't see a full episode of The Celebrity Apprentice, but I know I'm going to have to start.  Apparently, last week's episode was a love letter to radio.  The task even included making spots for a client that is a major advertiser on WBT. (Hi, Benjamin Franklin Plumbing!)

I'd mentioned here that many of my friends have been pushing me to watch the show ever since Brett Michaels talked about having type 1 diabetes.  It's strange to see him running around on the show when we all know he's been in the hospital. Some very good news on that front this week.  Apparently, he's been released and his doctors expect him to make a full recovery.

I'd still like to know more about how his type 1 diabetes affected this situation. USA Today reports Michaels will "...probably continue to suffer from severe pain for another seven to 10 days as blood pooled under his brain dissolves. Michaels is a Type 1 diabetic, which limits the available options to ease discomfort." 

Why? I've never heard about type 1 interfering with pain management.  I'm going to ask my endocrinologist (you are warned Dr. V).  I'll let you know what I find out. I'm guessing this is another example of the media not understanding what type 1 is all about (I'm looking at you, Dr Oz) but that may be wishful thinking.  Easier to believe they got it wrong than to add another thing to worry about!

Type 1 TV

Reality TV this year has turned into a primer on type 1 diabetes. 

I can't tell you how many people have asked me if I watch Celebrity Apprentice this year.  Not because I'm a big Trump fan (although I did meet him a few years ago!).  It's because contestant Bret Michaels has type 1 diabetes. He's shared what it was like to grow up with diabetes and got very emotional when he learned his daughter was being tested for type 1.

 

Over on American Idol, front runner Crystal Bowersox hasn't talked about it as much, but she has type 1 as well.  Of course, it's not like she's going to sing about it, but early in the competition she wasn't well enough to perform one night and that got a lot of attention.  Last week she partnered with her church to donate money to the diabetes camp she attended as a child.(click here to read about it)

As a parent of a child with type 1, I'm always grateful when high profile folks share their experiences with diabetes.  Of course, now Bret Michaels is going through a terrible time, in critical condition still, days after a brain hemorrhage. I can only wonder how diabetes is affecting his body and his treatment.

Like many people, I can't say I had a single thought about Michaels until just a couple of weeks ago.  Now I'm hoping and praying for his recovery and for his daughter's health. 

Proper Texting Posture, Please.

We had a great discussion while taping Health Headlines: The Show this week. (That's my weekend show, airs Sundays at 11am on WBT).  While you've probably heard of blackberry thumb, turns out many of us are doing a different kind of damage to our bodies by using our phones.  (This came up because of a Baltimore Sun story reprinted in the Charlotte Observer recently)

It's not about electromagnetism or anything like that.  It's about posture! I co-host the show with Dr. Russ Greenfield and Alan Tyson, a physical therapist with Architech Sports.  Alan says most of us use our phones while we're looking down, all hunched over.  That may be okay for teenagers, even if they send an average of 50-100 tweets a day, but as we get older (ahem) it can lead to aches and pains.

Alan says he's seeing evidence at his gym that texting and smart phone use is causing neck, shoulder and back problems.  The fix? He says use your phone at eye level - try to hold it up instead of down. He says we should read books like that, too. I sort of laughed at that, so Alan gave me a few easy stretches to help. 

Sit on a chair that doesn't have arm rests and let your arms dangle.  Stretch on arm down and tilt your head in the opposite direction.  Hold for 10 seconds and repeat a few times.  Then switch to the other arm and tilt your head in the other direction. If you text a lot, Alan says you need to do that stretch just about every day.

You can hear the whole discussion about texting and neck/back health this Sunday at 11am on WBT. Or download the podcast.