Monday, February 27, 2012

What a Difference a Little Protein Makes

We have mentioned in other posts our difficulties with managing the post-breakfast glucose spike. The fact that breakfast choices include so many high sugar foods, especially when considering those options that most young kids prefer, makes this a very challenging time of the day. There was a time when BGs over 300 happened more often than we would like to admit, and readings in the mid 200s felt like success. We have recently made a change to Emerson’s breakfast that has allowed us to make significant progress towards putting those days behind us.

During a trip to Emerson’s endo in early October we talked a bit about this period of the day. She asked if we had tried incorporating more protein in with breakfast, as she thought this might slow the absorption of carbs and reduce the magnitude of the spike. She suggested maybe a turkey sandwich for breakfast or including some other high-protein foods, such as peanut butter. While the sandwich certainly wasn’t going to go over well with Emerson, we got the idea.

Since that time we have simply added 1 TBSP of peanut butter to her breakfast every day and it has made a significant difference. Here are some stats to illustrate. In the 4 months before adding the PB, Emerson’s average pre-breakfast BG was 177. Her average mid-morning BG during that time was 241. We couldn’t seem to find a formula that would control the spike without sending her low by lunchtime. Since we have made the change, her average pre-breakfast BG has been 176 and her average mid-morning BG has been 200.

This has been a significant improvement, but we don’t think it has all been directly the result of the additional protein. The lower spike has allowed us to further tweak our formula and not have to worry about her going low later in the morning. So this is an indirect benefit of the change. Can’t say this will work in all cases but it is certainly something worth trying if you too are losing the battle against the post-breakfast BG spike. Emerson many times will eat the PB with a banana but has gotten to the point where all she needs is a spoon.

Wednesday, February 22, 2012

Insulin Pump Site Change

Over the weekend, we took a video of Emerson’s pod change (see video below).  We created the video for a few reasons.  When Emerson first started podding she was a bit apprehensive of pod changes.  We think this was mostly due to an audible “click” that occurs during the automatic insertion with the OmniPod.  In addition, the insertions can be temporarily painful depending on if the cannula contacts a nerve when entering.  This also likely contributed to the worry early on until she realized any discomfort was the exception and is generally short-lived. Helping us get to that point was a video of Caleb that shows him happily going through the pod change process.  Watching this video during our own pod changes for awhile helped us quickly get to where Emerson has no anxiety whatsoever.  So we wanted to do the same in the hopes that it can also be helpful to other T1Ds, especially any other princesses out there that would benefit by seeing another young girl get through the experience unaffected.

We also wanted to give anyone thinking about becoming a pumper and considering going with OmniPod an idea of the process – particularly how quick and easy it becomes after a few instances.  Finally, for those using other pumps, we thought this might be helpful to make comparisons between site changes.  I know we sometimes wonder how things are done with other pumps and figured others are curious as well.

Hope this is valuable and don’t hesitate to let us know if you have any question for us.

Thursday, February 16, 2012

Playing a Small Role in Extending T1D Awareness

Last fall we were fortunate to have the opportunity to get involved with Riley Children’s Foundation and their fundraising efforts. They invited us to be a part of a video production that was played at their Annual Luncheon, where donors and supporters are invited to hear and see the impact that their generosity has. Each year at this event they highlight a few diseases by interviewing families impacted by it and doctors and researchers treating and studying it. This year, T1D was one of the diseases being emphasized so we were asked to participate. While not the camera loving type, we didn’t hesitate to say yes. We considered this to be a great way to help extend awareness of the disease and how it impacts our families. We also saw this as another opportunity for Emerson to get more comfortable with having the disease and others knowing about it. The more she realizes that she is normal, even though she may have a couple more devices / tools than most kids, the better prepared she will be to deal with kids that try to make her feel less than special as she gets older.

The video was recently made available to us and we have posted it in case anyone is interested in seeing it. At the event we were also happy to see that T1D research was one of the featured articles in their Annual Report, and our story was part of that story. The more eyes focused on this disease the better – both for our kids and those that haven’t yet been diagnosed!

Wednesday, February 15, 2012

Detecting Pod Issues

When we gave a review of the OmniPod in a recent post (here), we mentioned that things can happen with the pods that are not necessarily technical failures and that these can be relatively easy to detect depending on BG consistency.  In our case, the types of things that can affect pods are they’re being banged into things (yes banged – the normal bumping into or rubbing against things that we all go through every day certainly don’t cause problems), and the cannulas becoming slightly kinked, either from being impacted or even the initial insertion.  Both of these occurrences can result in insulin delivery becoming less effective, but not in a way that triggers an alarm.

If a pod is affected by being hit or pressed against something, it might not necessarily result in the pod looking or feeling as though the adhesive is becoming loose.  Since we have been using Skin Tac the pods remain secure no matter what.  What can happen though is the impact, which will likely force the pod against the body, can result in the cannula becoming loose.  Think of it like a candle in a cake.  If you were to push down or against the candle it will force it down further in the cake.  When the force is removed the candle will now be loose from the hole being made bigger.  We believe this can potentially result in a portion of the insulin not making it into Emerson’s system and creating high BGs.

We had this happen just this past week so wanted to outline it here as an example to illustrate what we were talking about in the prior post. 

BGs for a couple days prior:

AM Snack
PM Snack

You can see that there are some out-of-range readings, but none of those were particularly alarming to us the overnight period has been a challenge for us all along (her desired range is 100-200).  However, now have a look at her BGs the following day…

AM Snack
PM Snack

Things remained relatively consistent through breakfast, but then a significant spike occurred.  Emerson’s pre-school calls us every day at lunch to tell us what she is eating so that we can tell them how many carbs to dose for.  They told me she was at 331 at her pre-morning snack check.  They were a little surprised but I was very surprised.  We wondered immediately if something had happened to her pod but decided to see what future readings showed before determining if we needed to go to school and change it.  We ended up not going to change it and decided at dinner that she was close enough to her desired range that we would see if another bolus got us back in business (during the week her mid-morning and mid-afternoon snacks are covered by brief increases in her basal rate that we estimate based on the snacks they eat – so this was going to be her first real correction since lunch).  We never made it to the next check to see if the dinner bolus did the trick.  Emerson was playing and at one point layed down on her back, where her pod was at the time.  She got up quickly and said her pod hurt.  She then told us that early in the morning she ran hard into a chair with it and that it had been sore all day.  A quick look revealed that the cannula was a bit loose.  When we removed the pod, there was a small bruise on her back which indicated that she did bump into something with it.

After the change it didn’t take long for her BGs to get back to where we wanted them.  Her readings to start the following day were 144, 131, and 185.  Obviously our early suspicions were correct.  This was the first time that her BGs didn’t stay extremely elevated so it was a little bit more difficult to be completely sure until Emerson complained of the discomfort.  Normally you would see the BG be much less responsive to basal and boluses and even continue to creep up or maintain its elevated level.  We assume this is much easier to detect in little ones that have very low basal rates, as higher rate doses probably result in more insulin being delivered even when there is a problem.

We hope this provides a better sense of what types of things can happen and how the BG can quickly be an indicator of a problem.  Sometimes you may wait a bit to be sure, but you are quickly aware of the need to take a close look at the pod for any evidence of a problem.

Wednesday, February 8, 2012

Special Treat

Well, here it is - our 1 year anniversary of Emerson’s diagnosis. So far it has gone much like the previous 364 days, but we decided to change it up with a special treat. We have kept Emerson on a pretty healthy diet over the last year, except for the occasional birthday party or rare splurge. We do usually allow her to have a small, not so healthy treat on Fridays. Today isn’t a party or a Friday but we surprised her with a trip to Dairy Queen to commemorate this day. Why Dairy Queen? Their menu, including nutritional information is available online, making for easy pre-planning!

Tuesday, February 7, 2012

1 Year Anniversary

It is hard to believe but February 8th, 2012 will be our 1 year anniversary of joining the T1D world.  We thought time flew before, but it was nothing compared to the last year.  Must be all those good night sleeps we have gotten since the diagnosis and all the free time we now have to fill, right?  In any event it has obviously been a difficult year at times but we have certainly learned a lot, made some progress towards BG consistency, and now have a better appreciation for the challenges faced by the many people dealing with this and numerous other diseases.

It is amazing to us how, after a full year, so many things about that day are still so clear in our minds.  It is tough to re-live that entire day but to avoid thinking about it on almost a daily basis is impossible.  We know we were truly lucky to arrive at the ER when we did and to have had so many good people care for her during her stay in the hospital.  On several occasions in the beginning we asked ourselves “why her?”  It just didn’t make sense that this sweet, loving young girl would be dealt such a challenging hand.  We all spent many nights lying in bed, allowing the darkness to hide the tears running down our faces.  It was just heartbreaking to think about our baby having to deal with T1D for the rest of her life, or at least for a very long time.  But the fact is - no child deserves to have to go through what this disease inflicts and requires.  And no family deserves to see their child or children have their life impacted by it.

As we have gotten more involved with Riley Hospital for Children, it has become clear that it could be much, much worse.  There are many kids that would give anything to trade places with Emerson.  While we still have those moments where the emotions get the better of us, we no longer ask the “why” questions.  We are fortunate that Emerson is such a great patient.  She still tells us at times that she doesn’t like or want diabetes.  We completely understand and agree.  But we also see how strong she is in dealing with all it has to offer and can’t help but think there are so many other kids that would have such a harder time coping with the disease – and understandably so.  We see how unaffected she appears to be when others ask about her pod or watch as she gets her blood tested or insulin delivered.  It has just become part of her.  For the way she has handled this entire situation – she is, and always will be our hero.

So how has T1D changed our life?  Well, outside of consistently getting less sleep and conducting extensive analyses of historical glucose readings to determine the necessary insulin dose adjustment, it hasn’t changed all that much.  Of course this is a bit of a stretch, but we did already stick pretty closely to a routine and schedule on most days, so we didn’t have to make a big change to how we go about our lives.  We also maintained a relatively healthy diet for the most part, so we weren’t required to dramatically alter what she eats to have a hope of finding consistent BGs.  We didn’t, however, always count carbs and measure foods….and boy were we missing out.

What do we hope changes in the coming year?  One of our biggest concerns still to this day is our ability to detect when Emerson is low.  We are fortunate that she doesn’t have frequent lows but when she does we have rarely been able to tell.  She actually seems to be at her best many times when she is low – her mood is usually good and she plays very well on her own.  The only characteristic that we have noticed on some occasions is her color becoming pale and dark circles appearing around her eyes.  We have not always been correct in using this as a predictor but it has been accurate more than a few times.  We are interested in hearing how others pick up on lows so if anyone is willing to share their experiences we would welcome them.  Another change we would love to see is for her pancreas to finally decide to discontinue the intermittent insulin production…unless of course a true miracle is in order and it wants to become a fully functioning organ.  It’s still okay to dream right?  We look forward to the day when we are no longer surprised with a series of lows after thinking we have made great strides in finding consistency, only for things to get back to normal after a few days.  Finally, we are hoping to find enough consistency in overnight BGs that we can reduce the number of checks and corrections that we currently perform.  We have made good progress recently but still do checks, and more often than not give corrective doses, at 12:30 and 3:30 a.m.  Depending on what those BGs reveal we sometimes find ourselves having to do additional checks throughout the night as her glucose refuses to cooperate (the flashlight is obviously a frequently used tool for us!).  Her endo is still surprised by how much it fluctuates while she sleeps.  We had no idea we would be re-living the newborn phase and have to function on only short naps for this long.  At this point, a night of uninterrupted sleep might put us into hibernation.

While we have only gotten through the first of many years, we do think we can offer some words of encouragement for those just finding themselves thrust into the T1D world.  We know how devastating the diagnosis can be, especially when you are completely unfamiliar with the disease.  If you are just going through this experience and feeling completely overwhelmed don’t lose hope.  While it isn’t by choice, you will quickly gain a level of comfort that you never thought possible and will become a very effective healthcare provider. 

Throughout this first year we have found the community of T1D bloggers to be extremely helpful.  Keeping up with the various blogs is very therapeutic, as it makes you realize that you are not in this alone, and that can be very comforting, especially in the beginning.  It would be great if there were some way that newcomers to T1D could be made aware of the DOC following the diagnosis so they can get acquainted with it as soon as they are able to catch their breath.  The community is a great source of valuable information, advice, and experiences and is one of the things we have been most amazed by.

Well, one year down and many more to go.  It was obviously a difficult year but one we are glad to have behind us.  The highlight of our year was an easy choice.  It was when a couple of her pre-school friends had their families bring them out to join us in the Walk to Cure Diabetes when it was in Indianapolis last fall.  It will be experiences like these that will allow for brief escapes from this challenging disease going forward, and there can’t be enough of those.

Monday, February 6, 2012

T1D Doesn't Slow This Girl Down...

A few pictures of Emerson's fun-filled weekend...

Getting ready to check out all of the activities surrounding Super Bowl XLVI

Hanging out at Monument Circle

Checking out Lucas Oil Stadium

Catching a nap in the car

Cartwheeling with her gymnastics team

Ice skating at a Super Bowl Celebration Site

Testing out the slide

Hanging out at the Super Bowl Celebration Site

Thursday, February 2, 2012

Spreading Awareness – One Friend at a Time

In a prior post we talked about how Emerson took Rufus (the JDRF diabetes bear) to school on a recent day and talked to her friends about diabetes. This was a great opportunity for her but not an entirely new one, as her school friends have been exposed to this disease through her for nearly a year now and have been truly great, with some even participating with her in the JDRF Walk for a Cure last year. Those same opportunities have not always presented themselves in other settings though…but that is beginning to change.

Emerson has been taking gymnastics for a little over a year now. Our house has become her second gym as she makes use of whatever furniture she can to practice what she learns each session. Her hard work has paid off as she has steadily advanced through the different class types and levels, with her most recent move occurring just in the last couple weeks. She is now part of this gym’s pre-team program, which is made up primarily of 5 and 6-year olds (she is not yet 4 ½). Something we noticed immediately is how much more inquisitive this age group of kids is. At the time of Emerson’s first class her pump site was on her bottom. We are “podders” so the pods create a noticeable bulge under her leotard when they are on her back or butt. During the first session she was paired up with another kid and as they were taking turns we saw the girl stop Emerson for a moment, turn her around, pat her butt and begin talking to her. We were not at all surprised to see Emerson respond immediately with a quick response and shrug of the shoulders before continuing on with the activity.

From the first day she was diagnosed we have always made her feel as though she is special and that she has an opportunity to educate others about this disease (not that she always got that but we feel she is beginning to). When we made the Omnipod our lifeline of choice we again made her feel like she had a cool device that other kids would ask her about and that she should be proud of. Every session at gymnastics as she has interacted with different kids we see them inquire about what is under her leotard or armband (we use the Bands 4 Life armbands for extra protection when she wears it on her arm). We watch as she responds quickly and naturally to make them aware of what it is and what it is for without any signs of embarrassment. She is not ashamed at all about her condition or extra “equipment” and just takes it all in stride. We couldn’t be more proud of her and hope that going through these experiences at such a young age will make it easier on her when she gets to the age where kids may try to make her feel different and not so special. Even more we hope that these types of interactions are happening everywhere, so as today’s young T1Ders get to that age, other kids will be fully aware of the disease and realize that it doesn’t make those with the disease any less normal than they are.

Wednesday, February 1, 2012

Insulin Pump Review…our thoughts on the Omnipod

We mentioned at the end of a recent post that a trip to the endo in early January revealed that Emerson’s A1C had increased slightly since her last visit and that it wasn’t due to us allowing her to deviate from her normal diet over the holidays but rather to issues we had with her pump. We didn’t go into any detail in that particular posting because we planned to write this one – which is our review of the OmniPod.

Emerson has been podding since June 13, 2011 – so for 7 ½ months. We felt fortunate to be approved by insurance for a pump just 4 months after her T1D diagnosis, as we had heard that isn’t always the case and they actually denied the request initially. We attended an insulin pump information session put on by Riley Hospital for Children and listened to the pros and cons of many different pumps. We also did our own research but mostly found websites that simply compared the functionality of the pumps, and read blog postings from fellow bloggers and the Children with Diabetes forum. While we didn’t find any real deal-breakers with other pumps, and our pump nurse felt that we couldn’t go wrong with any of them, selecting the OmniPod wasn’t a difficult choice for us.

We loved the fact that it was tube-free and watertight. We assumed that the tubes on the other pumps would have the potential to get caught on things during play. We were sure though that the pods being watertight was a big deal to us. We live just outside of Indianapolis, so our pool activity is limited to a relatively brief timeframe. But during those few months Emerson does love to be in the water and not having to interrupt her insulin delivery while she swims is a big plus. In fact, we took her to the pool several times the first week on her pump to test it out.

This is true for baths as well. While we don’t think it is necessarily a huge risk to stop and restart insulin delivery for short durations, we like the peace of mind of knowing that basal insulin is always flowing, the convenience of not having to remove and replace the pump, and avoiding the additional manual insertions that would come with those additional applications.

That brings us to another significant benefit of the OmniPod – the automatic cannula insertion. After adhering a new pod, the insertion is accomplished by simply pushing a button – no seeing or handling needles. This is all managed through the Personal Diabetes Manager (PDM), the handheld device that wirelessly programs insulin delivery, calculates suggested insulin doses based on the settings and inputs provided, and contains the built in Freestyle blood glucose meter. We think the meter is a significant plus over those that don’t have an integrated meter as it is one less device to carry and it eliminates the potential for errors when transferring the reading from a meter to the pump. We also love that it is a Freestyle meter as the test strips require significantly less blood than other strips, meaning the lancet can be used on a much less invasive setting. In addition, the pods are relatively small and very lightweight in comparison to having to wear an entire pump, and even smaller pods are in the not too distant future according to Insulet. We have heard and read concerns by some parents about the size of the pod, but we do not feel that the pod is too big for Emerson’s small body, and she isn’t bothered by its size.

There are obviously many other features and aspects of the OmniPod that we like, but this is just an overview primarily of those things we believe are unique to this pump.

We believe the OmniPod is the best option for us and expect to be podders for a long time. But we do acknowledge that there are some negatives that, while we see them as minor, we want to explain for the benefit of others that may be preparing to make their own choice. Firstly, the smallest increment of insulin (both basal and bolus) that the pod can deliver is 0.05 units/hr (compared to some others that allow for 0.025 units/hr). We suspect this will be a non-issue for most users and would only affect those receiving very small doses. In our case it has not been a significant issue but we have experienced an occasion or two where going from one increment to the next was almost too big of a change. However, by tweaking the basal rate and the bolus formula we have always been able to manage through this fairly easily. The other drawback that we think others should be fully aware of is the periodic pod failures that do occur. When this occurs you simply contact OmniPod Customer Service, which has always been great to deal with, and they will send out a replacement pod free of charge. While we were obviously worried the first couple of times this occurred, it has become just a minor inconvenience. We do want to point out though that this isn’t always the fault of the device. The pods will fail due to technical issues but more frequently in our case, can simply work less effectively due to issues with the site and/or placement on the body. This is identifiable through suddenly elevated glucose levels that normally remain high until a pod change occurs. This is not something that OmniPod can control or predict and is obviously not a product defect. We were slow to react to this in the beginning but as consistency in Emerson’s blood glucose has increased it has become much easier to detect and mitigate. We cannot explain what specifically drives this and believe that simply being aware that this can occur and flexible enough to address it when it does is a small inconvenience in comparison to the pros of this pump. Static, from things like plastic slides or plastic school chairs can also interfere with the pod and cause it to fail, but this is an intermittent issue and something that can easily be mitigated by tucking a small piece of a dryer sheet in the pod cover or nearby clothing.

We hope anyone that comes across this that is looking for their first pump or is considering switching pumps finds this helpful. We believe that the availability of more thorough reviews that cover both the pros and cons of the different pump options would vastly improve the decision making process for folks. Given that, we invite and encourage others to comment on their pump of choice to give readers the ability to conduct a more in-depth comparison of alternatives. If you have questions on the OmniPod that are not addressed here feel free to let us know and we will certainly be glad to answer them for you.