Diabetes Awareness: But she's too skinny to have diabetes......

We have been extremely busy the last few months and I have gotten behind on my bloggin'.....A lot has happened in the Dean house since my last post so I have plans for several posts over the next few weeks!

However, with this post I want to discuss type 1 diabetes misconceptions.  I've touched on this topic in the past, but this issue has been coming up a lot more lately.  I used to get defensive when people would make these types of comments, but then I realized its because they don't know any better.

There are many misconceptions about this disease, but I've put together the ones I feel strongly about.  Here is my top 5 list of type 1 diabetes misconceptions:

1. "But she's too skinny to have diabetes." Although diet and weight are factors for type 2 diabetes, it is not the cause of type 1 diabetes.
2. "She can't eat that cupcake." As is should be for us all, moderation is key.  Also, there are times when sugar levels can drop too low and sugar is needed to raise it.
3. "She can't play sports because her sugar will drop." Exercise is important for everyone including those with diabetes.  Precautionary measures like eating snacks and frequent bg checks can help avoid hypoglycemia.
4. "She'll never be able to have children."  Diabetic pregnancy require closer monitoring, but there is no reason,  with excellent blood sugar control and diabetes management, that mother and baby will remain healthy throughout the pregnancy and birth.
5. "Taking insulin will cure diabetes." Insulin is not a cure, it is their life support.  Unfortunately there currently is no cure for diabetes.

Enjoying the summer!!

What's been going on.....

Whew....well things are going well with Alyssa!  She is healthy and active and enjoying the summer!  Life is busy and hectic for our whole family and I haven't had the time to catch up our blog!

Before school got out Alyssa's elementary school held a Kid's Walk to Cure Diabetes (JDRF) and Alyssa raised the most money out of the entire school!  She was gifted a huge care package from Chick Fil-A as well as many other prizes from JDRF!

On June 15th Alyssa celebrated her 10th birthday with a party with her friends at the park!

Now we are preppy for walk season and looking forward to taking part in all the activities!  In the meantime Alyssa is working hard at the thing she loves the most, competitive cheer and enjoying the summer!!

Our insulin pump is the best!

We are approaching our six month mark since starting on the pump.  I have to tell you that getting used to the pump did take some time, but I honestly feel it was the best decision we could have made.  Alyssa has adjusted nicely and honestly knows how to work it better than I do.  Site changes have become much easier and we have had little problems.  I still get up and check her blood sugar between 2 and 3 am, depending on what time she went to bed.  She sleeps right through this check and this makes me sleep much better.  This has helped me catch a couple of lows as well as make corrections for any night time highs. 

In our case the pump has also helped with lows that are the result of exercise.  We disconnect during cheer practice and performances and have had only 2 or 3 lows.  This is because with the pump, Alyssa no longer needs her long lasting insulin that's peak can be unpredictable.  We check blood sugar levels before and after and correct accordingly.

Fall happenings and pump update

Well, Alyssa has been using the pump for a little over a month now.  We've had some ups and down, highs and lows; and tears and laughs....I would be lieing if I didn't tell you there have been times I thought I had made a mistake by pushing for Alyssa to get on the pump....I'd be lieing if I said I had not thought about disconnecting it and going back to shots.  But I keep reminding myself why this will be best for her in the long run. 

The hardest part....the first several site changes were a nightmare.  Alyssa's anxiety about them got her so upset leading up to it that it took at least an hour to calm her down to put in the new site. Fortunately that has gotten better.  The problem now is that she'll only let me put the sites on her bottom....we are alternating cheeks.  We have done the stomach once but she hated it.  Alyssa is so petite, her bottom is the only place she has any extra meat. 

We have also had a few scary high and low bgs that seem to have come out of no where.  There were also a few night time lows, but I think we've worked out those kinks with basal rate changes.  In the beginning I was checking her bgs every 3 hours while she slept, now I'm only checking once in the middle of the night.

I do finally feel we are getting the hang of things.  There definitely are many pros of using the pump.  Alyssa has much more freedom with when and what she eats....if she wants something to eat at any time, we just bolus for the carbs.   Its so nice to enter her carbs and the pump figures the amout of insulin...all of this without another injection.  This made Halloween and Thanksgiving a lot less stressful!  One site change every 3-4 days versus 12-16 injections over 3-4 days.

 Also, besides a few spikes and lows, her average blood sugars have been really good.  During cheer and tumble, we disconnect and honestly have had fewer lows during exercise because she's no longer on the long lasting insulin, Lantus. Since she's given little amounts of fast acting insulin every hour through the pump she no longer needs the long lasting.

Overall, even though I've had some moments of doubt, I believe the pump will afford Alyssa more freedom and as she gets older, more independence.  As with any change, adjustments should be expected.

Diabetes stinks....

This morning while I was straightening Alyssa’s hair (today is picture day at school), I asked her, “If someone asked you what it was like to have diabetes, what would you say?” She replied simply with, “Diabetes stinks.” Now, for those of you who know Alyssa, you know that she can be quite dramatic. For instance, if she’s has a headache, her head is “killing her to deathhhh” or when she’s told to clean her room, she‘s been known to lay out in the floor explaining she‘s way too exhausted to take on such a task. So, as you can imagine, I was expecting a much more elaborate answer….like “diabetes is horrible!”, or “diabetes is the worst thing ever invented!”

Now most would think that this reply was a good thing. That Alyssa has adjusted to having diabetes, and that although it’s not great, it really isn’t that bad. Instead, her answer saddened me at first. What child should have to endure this? What child should not be able to eat a piece of candy without thinking about it or be able to eat a piece of their friends birthday cake without looking to their mother to be sure it’s ok. (Side note: at a recent birthday party she told me that she wanted to give up eating pizza so that she could have a slice of cake.) What child should have to prick her finger so that it bleeds before each meal, before physical activity, after physical activity, before she goes to bed, in the middle of the night, and every time she doesn’t feel just right. That’s any where from at minimum 4 and up to 8 times a day. What child should have to have 2 SHOTS in her bottom after breakfast, a SHOT in one of her arms after lunch and a SHOT in her other arm after dinner and sometimes a SHOT before bed if her glucose levels are too high.  What child should have to face the risks of heart and kidney disease, blindness, amputations, and early death?  More simply, what child should not be able to go to a sleep over or anywhere without their mom?

I know there are many diseases out there, and each one of them sadden me….especially any disease that robs a kid of the childhood they are entitled to. Diabetes is a disease that can do just that….if its allowed to….. My husband and I refuse to let this happen. The day Alyssa was diagnosed, I prayed that God would let me take this from her. I think in a small way He has because she has no fear or anxiety about the future of her disease.  I think she sees how diligent we are in advocating for her and researching for new treatments as well as preparing her to be able to manage this on her own one day.  She notices all the people who love, support, and push for finding ways to improve her life.  She knows that without research insulin would never have been discovered and meters wouldn’t be improving each time a new one comes out. Without research insulin pumps would not have been invented (We are so excited that Alyssa’s first pump is on the way and how its going to make life a little bit easier. And instead of 4 SHOTS a day, it will be a new infusion site every 3 days!!) Through all of this she believes living with diabetes will get a little bit easier over time. Most importantly, she trusts my words when I say there will be a cure one day.

I’ve said this many times….Diabetes is the first thing I think about in the morning and the last thing I think about before I go to sleep, and I will gladly take that on for her.  In Alyssa’s eyes diabetes is just a small part of her life and I‘m happy in that.


*This year our team, Alyssa's Army, will be walking in JDRF's event, Walk to a Cure at Elon University in Burlington, NC.  If you would like to make a donation to our team, you can do so through the link below.

Alyssa's Army Walk Page 

 

 

It's walk season.... Fundraising ideas

We have so many fundraising events that will benefit this year's walk. Of course we have the online donating through JDRF's walk page. We had a fundraising yard sale a couple weeks ago that was successful. Currently, we have 2 catalog/online shows going with Pampered Chef and 31. Next weekend some friends of ours are hosting a pig pick in' fundraiser. We asked one of our company's suppliers and they agreed to sell JDRF sneakers and another hairstylist friend is donating a portion from each client for the month of September. Our church also has been extremely generous with love offerings and donations for our yard sale.

With a little less then two weeks to go, I do not see how we can not reach our team goal of $3500!!

The D-O-C

When your child is first diagnosed with diabetes your world is set into a spin, especially if you have no previous exposure to the disease.  In my case, my step dad was diagnosed when I was in my early teens and I had gestational diabetes when I was pregnant with one of my children.  So, I had a little understanding of the physiological aspect of type 1 diabetes.  However, when my daughter was diagnosed I still felt like a steam roller had flattened me.  My new job was going to be her artificial pancreas.  I was going to have to measure and calculate what she ate.  I was going to need to determine the amount of insulin she needed based on her blood sugar levels and consumption of food; all while being sure to account for her physical activity.  I wasn't sure if I was the best person for this job.  What if I messed up?  What if I made a mistake?  And then there was the fact that our entire lives were flipped upside down.  This disease affects the entire family.

We were and are very fortunate to have a supportive "village" that immediately jumped in to help us make sense of this situation.  But what we needed too were other families who lived with this disease, who had been where we were.  I began to search the Internet for more information about living with this disease and stumbled across a mother's blog, D-Mom, The Sweet Life with a Diabetic Child.  I read her current and older posts.  Her blog led me to another d-mom's blog, and so and and so on.  Their blogs also led me to Facebook groups and Twitter events.  This is the Diabetes Online Community (#DOC).

Connecting with the DOC helped me know what to expect when my daughter returned to school after her diagnosis, helped me figure out what a 504 plan was, and led me to volunteering and advocating...they led me to start this blog.  From the DOC I've gotten advice, support, and understanding from other parents who live similar lives.  From the DOC, Alyssa has built relationships with other children who are like her....who have to prick their fingers and take injections and who feel bad when there sugar levels aren't just right.  (And they've helped us choose what pump we will get)

If you or your child is newly diagnosed, my advice to you is to connect through blogs and social media with others who have been where you are.  I'm sure glad I did!

Dawn Phenomenon and Pump News

Alyssa has experienced high blood sugars in the morning for the last two weeks or so.  High for her morning level is anything over 150.  As I have mentioned before, Alyssa's blood sugar usually drops about 100 over night.  So my goal is to have her sugar somewhere around 200 at bedtime.  If her glucose level is below 200, she'll have a bedtime snack and if it is close to 200 she will not.  What was odd, I was seeing high blood sugars in the mornings and even after the nights she didn't have a bedtime snack.  Could this be the 'dawn phenomenon' I've been hearing about?

Dawn phenomenon is the term used to describe early morning (usually between 2a-8a) high blood sugars in diabetics.  It is thought that the body releases hormones over night, like the growth hormone and cortisol, that cause insulin resistance.  Alyssa takes Lantus in addition to Novolog, which is a slow release insulin that normally works for 24 hours.  I've heard though it can often be unpredictable with schedule changes.  Of course other reasons can be incorrect dosing of insulin or eating too many grams of carbs before bed.  In my opinion, I think it is tied to activity level as well. 

What this means?  I will again be waking at 2 in the morning checking blood sugars to see if there is a rise in the middle of the night for a few days and see if adjustments need to be made to her diabetes plan.

Pump news: We looked at 4 insulin pumps the other night.  It was really cool because Alyssa got to touch them and see how they worked.  After the pump class, I read all the information and narrowed down to either the Omnipod or the Ping.  We have chosen to go with the One Touch Ping.  I really thought Lu was going to push for the Omnipod because it is tubeless and stays on, but she liked the Ping best.  The cool thing is that it is 100% waterproof and Alyssa also liked their infusion sets the best, which are easily inserted and come in different colors :).  So yesterday, I faxed all my insurance info over the the rep and we have started the process.  Next step will be to see how much they will cover!

http://www.animas.com/