Thursday, June 26, 2014

The Final Descent

If you have or you have a child with diabetes then you probably know about the "Dawn Phenomenon" This is when the blood sugar has an unexplained rise in the morning due to the body releasing hormones around 4-5am. We do experience this on occasion but more commonly we have an opposite thing going on with J's blood sugar.

Around 3am every morning we start to see J's blood sugar make a VERY gradual fall, often causing him to be in danger of dropping low. Recently I have started to play with the Temp Basal setting on his pump to see if this would stop the drop and sure enough, it works like a charm! This allows me to test out the changes that need to be made to his basal rates. This gives us a little more peace of mind that we don't have to watch that number slowly and steadily drop for 3-4 hours and wondering if he is going to go low and if we should treat him ahead of time etc etc.

As you can see in the picture below, we were trucking along with a VERY steady blood sugar from 10pm until 2:18am.

Then this happens.............

You can clearly see when his blood sugar starts it's decline. Almost like a plane making it's final descent before landing at the airport. What causes this to happen? Does his body produce insulin during these hours? Does he have better insulin absorption during these hours? These are answers that I do not have, but what I do know is that his little body is up to something in the wee hours of the morning and as a result his body requires less insulin.

Today at about 3:30am I started out with a Temp Basal decrease of 20%. I watched and waited for about 90 minutes to see if that would stop the decline. It didn't level it out the way that I wanted, so I changed the Temp Basal to a decrease of 50% around 4:30am and as you can see he held pretty steady and actually started to have a little rise.

These pump settings are great tools to use. It is so much easier to test out dosages and learn how his body reacts without having to change the permanent settings every single time. This morning after we woke up and I consulted with my Diabetes Strong Co-Captain we decided to go ahead and make a change to his regular basal settings and see how his blood sugars react moving forward.

I hope that everyone has a wonderful Thursday and I would love to hear how you manage the body's many T1D mysteries!!

*this is in no way medical advice and you should always consult with your physician before making any changes to your medical regimen.

Monday, June 23, 2014

HATE diabetes. LOVE the diabetic.

These questions have come up more times than my heart can take over the course of the 17 months that J has had Type 1 Diabetes.

Mom why doesn't Ethan......
have to have a shot?
have to check his finger?
wear an insulin pump and cgm?
have diabetes?

Hearing these words come out of my son's mouth is like ripping my heart out of my chest, throwing it on the floor and stomping on it! J quickly discovered after his diagnosis that he was now different, but how do you explain it to a then 3 1/2 year old? In the beginning to help him cope we would let him pretend to give us all shots after he got his to make him feel like he wasn't alone. A little white lie that we as parents tell to protect our children. The fact of the matter is, that he is alone in this house! None of us know what it is like to live with T1D and have to have multiple daily shots, finger/toe pokes, wear an insulin pump, wear a cgm, and how his blood sugar numbers make him feel. I wish every day that I could understand what he has and will have to go through and even more I wish every second of those days that I could take it away from him and make it all better. After all, isn't that my job as his mother??

So when his innocent little 5 year old mouth asks me these impossible questions, what am I supposed to do? I try to explain without bursting into tears, that "Ethan doesn't have T1D, so he doesn't have to do the finger checks and wear medical devices." Then field the follow up questions as to WHY.....well, that is an answer that no one has. So I simply answer with "I don't know buddy." I have even heard him say "well, maybe when Ethan gets big like me, he will have diabetes too." Bless his heart, he isn't even to an age yet where he understands what having this disease means to his life.

This is the part where I start to get angry. Why does my child have T1D? Will he ever see a cure? How do I make him feel like he isn't different, when he clearly is? How do I protect him? How do I teach him to over come the odds and prove that this will not define who he is or what he does?

I hate this disease, I hate it with every ounce of my being! I hate the innocence and freedom that it is stealing away from my child, right before my very eyes! I hate that I have to watch him endure pain and discomfort! I hate that I have to make him sit out of play, swimming or activities because I have to fix his blood sugar! I hate that he is different! But most of all....I hate that there isn't a damn thing that I can do about it! We have no therapy, surgery, or treatment options! There is no regulating or controlling T1D. It is a minute by minute war going on in his body. He is on life support, constantly dependent on an infusion of insulin or a consumption of sugar to keep him alive! All we get to do is  wait, hope and pray that he will live to see the day that he has a CURE!

The cold hard truth of the matter is....I can't make it better, I can't take it away, I can't answer the questions of why he has this disease and the rest of us don't. I just CAN'T!

All that I can do is, fight every day to manage T1D the best that I can, and fight for awareness and a cure! I will never give up, because in this house we are DIABETES STRONG!

Monday, June 16, 2014

Hurry up and Wait

There has been a lot of news lately in the diabetes world surrounding the "Bionic Pancreas" or "Artificial Pancreas" and the time frame of it's much anticipated release.
Some of you might be wondering:

What is an Artificial Pancreas (Bionic Pancreas)?
The Artificial Pancreas is essentially two Insulin Pumps. One that administers Insulin and the other administers Glucagon. Glucagon is what is currently used in extreme low blood sugar situations to raise blood sugar levels. Now, this is the part that makes this system revolutionary....these two pumps are controlled by a Continuous Glucose Monitor (CGM) this relays the information to the pumps and the pumps automatically do the work and calculations and decide whether the patient needs insulin or glucagon and what that amount will be. No more counting carbs, no more multiple finger sticks. You just eat, exercise, and sleep knowing that the system is doing all of the work for you! This is as close as we can currently get to mimicking a healthy functioning pancreas!

What are the downsides of having an Artificial Pancreas?
J will have to wear THREE sites. One for the insulin pump, one for the glucagon pump and one for the CGM. That is a lot for a child who doesn't have much "real-estate" available for all of those sites. Another downfall to the system is that J will have to change his Glucagon site daily. This is a new therapy and there isn't a formula currently on the market that is viable for more than a day, but there are formulas in the works that could potentially change this status. Lastly, you are completely relying on technology to keep your blood sugars in range 24/7. For a lot of diabetics and parents this can be a difficult thing to imagine. We spend 24/7 monitoring and making life saving decisions. What will our lives be like when we no longer have to have that worry or stress?

I personally can't wait for the day that this comes to market. This will be an amazing step forward for J's health and future. He will have the freedom to just be a kid and eat whatever he wants whenever he wants without having the roller coaster spikes and drops in his blood sugar and feeling terrible as a result of it. When he is sick he won't have to feel worse because his blood sugars are also causing symptoms and worry that he will have to be hospitalized. He won't have to miss out on things because his blood sugar needs to be checked, or "fixed". He won't have to worry about the long term complications that blood sugar fluctuations can cause. Most importantly, he won't have the worry that he won't wake up in the morning because his blood sugar dropped too low during his sleep and he couldn't wake up to fix it.

Will there be complications with this system? Absolutely! After all this is not a pancreas. They are devices that can fail and will fail at times. However, it will fail a lot less often than we as humans currently do! Will those problems be worth the peace of mind and freedom that the system gives, hell yes! We have failed sites and malfunctions with his insulin pump now, but on top of that we also have to battle HIGH and LOW blood sugars daily and the complications that come along with those.

This is the first step forward to creating a life for diabetics that they could have never imagined having! This is a piece of freedom that every single T1D lost at their diagnosis. Until we have a biological cure for Type 1 Diabetes we just have to keep hoping and praying for medical advances like these. These advances will help my son to live to see the day when he can say that he "used to have Type 1 Diabetes."

So for now, we just get to hurry up and wait!

For more information about the Artificial and Bionic Pancreas updates you can look at these links :)

Thursday, June 12, 2014

"Thanks, now keep him alive!"

This week J started Summer Camp at his school. Last year we were very blessed to have both a teacher's aide and teacher with a lot of experience in diabetes care. We never had to worry about his safety because they were always keeping a close eye on him and knew exactly what to do when something didn't go as planned. Well that comfort was quickly shattered when I showed up to summer camp on Monday morning to go over the basic diabetes care with his new teaching staff.

Mind you J is equipped with all of the latest D-gadgets: A Continuous Glucose Monitor and a Insulin Pump allowing his care to be fairly "easy" and worry free. This allows you have the ability to see what his blood sugars are doing 24/7. No needles, No vials of insulin, just watch his CGM, check his blood sugars and dose the amount of insulin that we or the pump tell you! The teacher (which will be his kindergarten teacher in two years) that has J for the morning session of Summer Camp looked at me like I was speaking a different language when I started talking about his diabetes care. She will have a diabetic child in her classroom this year but she was absolutely blindsided and dumbfounded that she would actually be responsible for any of his care. J attends a private school and they are not bound by the law to provide care or a nursing staff like the public schools and they can actually refuse to provide any care at all! Immediately my heart sank and I began to panic (on the inside).

Being the type of person that I am, I had already made a binder explaining all of his care in layman terms because I knew that he would be around new people. In the binder I have a section with pictures of the symptoms to look out for during Hypoglycemic or Hyperglycemic episodes, a user manual (made by me) for both the CGM and the Insulin Pump, Glucagon instructions and a basic BG chart with the ranges in Green, Yellow and Red sections, what to do when his blood sugar goes into those ranges and last but not least our phone numbers if they have any questions. Thankfully the teacher from last year who was involved in J's care is helping out in the afternoon session of summer camp and helped assure me that she would teach them the ropes and take care of him. I felt a little better but a piece of me knows that when J is not with her, he is with someone who has no idea what to look for or do if a situation arises. I felt so terrible for the ones who had no idea what they were getting themselves into. I am pretty much handing over my child and telling them "Thanks, now keep him alive!"

I can't even begin to put into words the fear that we as parents have when we are trusting strangers with our child's life! All week I have been worried and wondering how he is doing, if they are watching his CGM, if they are reading the binder and educating themselves, if they know how truly important and serious Type 1 Diabetes is and that it must never be taken lightly. We just have to pray and trust that they do and offer any support that they need from us to feel comfortable and confident to care for J.

These situations are what make T1D so difficult for a parent. This disease is a minute by minute management with care given by normal people.....not doctors! We have to keep our son alive and teach those around us how to do the same.
It is not fair that this disease has been taken so lightly by society.
It is not fair that we have to put that stress on teachers, loved ones and family.
It is not fair that we bear the burden of keeping our son alive and healthy.
It is not fair that we have to live in constant fear and worry about what the day holds in store.

Unfortunately, we all learn in one way or another that life doesn't care what is fair and what is not. This is our reality and this is the task that we have been given. I refuse as a parent to let my child suffer because of Type 1 Diabetes! No, I will not home school my child. No, I will not keep him from playing sports. No, I will not prevent him from having ice cream or cake when all of the other children are allowed to just be a kid. No, No, No, I will not!

I will gladly feel panic on this inside and do everything in my power to educate those around him, so he can have normal life experiences. This is our reality and we will face it head on and hopefully teach J to do the same!


*If you are interested in my school survival binder I have the PDF's available, just email me and I will gladly send them your way :)

Wednesday, June 4, 2014

Are you utilizing your data?

Today is Data Analysis Day!!
This is when I download both the Dexcom G4 data and the OmniPod data to see what trends are happening and what changes need to be made. I have also discovered a little secret report that can help you potentially see where your A1C is at ;)

I will start off with the Dexcom report. This is the most in depth data that we have because it is giving a reading every 5 minutes 24/7. This allows us to see the biggest trends and it also gives recommendations based on those trends.
The report that you use to get the best picture of this is the Trend Patterns & Insights
I select the 14 day because it allows you to vividly see the trends.

As you can see I have circle the areas where there are the most concentration of data. At the bottom of the report it also tells you the pattern insight summary and gives you suggestions for changes that possibly could be made.

Before we make any final decisions about the adjustments that need to be made, I have to analyze the OmniPod data as well. The report that I use is the Two Week Glucose Summary

I use the Average row to see where the problem areas are and compare those to the Dexcom report, if they match then we have to decide if it is a carbohydrate ratio issue, basal rate issue or a correction factor issue.

Here is the little bonus report that I discovered before our last endocrinologist visit. I hate being blindsided by the A1C result so when I found this report and I compared it to his A1C result it was nearly DEAD ON accurate! Woo Hoo
*Now, since we use the OmniPod insulin pump, I am only able to help those users

When you are in the Freestyle CoPilot Health Management System. Under the Tab Reports you will select Statistics

Once that has loaded you select Last 3 Months from the drop down menu

When your report is loaded you will look in the Average Row and Total/Summary Column and Voila! you have your potential A1C predictor :)

I would love to hear some feedback on if this report was in fact close to your actual A1C like ours!

I hope that this has helped some understand how valuable this data can be and that if it utilized on a regular basis (our endo recommends weekly) then T1D management can be that much more successful!

*Please be advised that this is in no way medical advice, this is just what works well for our family in managing J's T1D. Always consult your physician before making any changes in your medical decisions and care plan.