Overheard

A couple of weeks ago after swim lessons Emerson was talking to another little redhead (for some reason redheads seem to bond).  During their conversation, the young girl who was probably 7 or 8, noticed Emerson’s Bands 4 Life pump cover and asked about it.  Since Emerson always tells people that she is wearing a pod (easily confused with an iPod), I chimed in and told the girl it was an insulin pump.  The young girl said that her dad used to wear an insulin pump.  She went on about her business and chatted with her friend.  However, when she was leaving the locker room, I heard her say to Emerson “Type 1, right?” and off she went.

We are always glad when others ask Emerson about her pod as it gives her the opportunity to get comfortable talking about it at a young age and to help further awareness.  But it is great when she is exposed to other kids that have some familiarity with T1D as it helps to make her realize that she is no different than anyone else.

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.

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:

	12:30am	3:30am	Breakfast	AM Snack	Lunch	PM Snack	Dinner	Bedtime
Sunday	272	280	156	167	146	229	157	191
Monday	107	216	160	219	193	175	163	180

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…

	12:30am	3:30am	Breakfast	AM Snack	Lunch	PM Snack	Dinner	Bedtime
Tuesday	255	179	187	331	282	201	202	249

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.

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.

All Our Favorite Things….for the Management of T1D that Is!

Just as Oprah had her favorite things each year, we too have some “items” that are our favorites when it comes to managing Emerson’s Type 1 diabetes.  It is a mix of products, household items, people, or “services” that improve Emerson’s quality of life, make our management of her disease more effective, or provide a source of valuable information and the realization that we are not alone.  So without further delay, here they are:

The OmniPod:  Insulin pumps are great things in general – no multiple daily injections, but the tube-free and water-proof features of the OmniPod make it the ideal device for our situation.  Tubing we think would continuously snag on anything and everything in the vicinity of her during play and gymnastics, and the fact that she can go swimming and take a bath without removing her pod and interrupting insulin delivery is a major plus.

The “Super Bolus”:  While we still have morning BS spikes on occasion, they are certainly not as frequent or of as high a magnitude now that we have gotten more experienced with our variation of the “Super Bolus” technique, where we give extra insulin with the breakfast bolus to limit the post-meal spike, and eliminate the basal for a couple hours after to prevent a nasty crash.  It definitely took a lot of trial and error but we are seeing the results.

Freestyle Test Strips:  Compared to the meter and strips we were initially prescribed, the extremely small volume of blood that these strips require is simply amazing.  We hate that finger sticks remain the best way to determine an accurate BS, but not having to squeeze until we get a pool of blood the size of a small lake sure is nice.

SkinTac:  The aforementioned OmniPod has a pod that attaches to Emerson’s body for up to 3 days.  They have an adhesive back but that doesn’t always hold up to a 4-year-old’s play agenda.  For the first several months we also taped the pods to her body as an additional means of security.  However, this always irritated Emerson’s skin.  Fortunately we recently found SkinTac, a liquid adhesive for adhering things to skin.  We apply it to the pod site before placement and can’t believe the difference it makes.  The pods are now much more secure and better able to withstand the demands put on them, and skin irritation has been eliminated.

Uni-Solve:  The combination of the adhesive that accompanies the pod, which again is meant to hold up for up to 3 days, and the SkinTac create a bond that is very difficult to break and remove from the skin.  That is until we discovered Uni-Solve, which quickly breaks down the adhesive and allows for easy removal of the pod, no matter how affixed it is at the time.  This works better for us than baby oil.

Medical ID bracelet:  We always make sure that Emerson is wearing a medical identification bracelet, and she doesn’t seem to mind wearing pretty bracelets!

The community of T1D bloggers:  It is so nice to have blogs to visit where we can learn what others are going through, what works/doesn’t work for them, and/or to just be reminded that we are not alone in this.

The Staff at Emerson’s preschool:  They have been more than awesome and have given us a peace of mind that we never thought possible.  Let’s put it this way – a comparable daycare opened up literally next door to where we work.  It seemed like a no-brainer that we would move Emerson there so we were closer in case something happened.  We never even considered it.  The staff at Emerson’s school is like family to us and takes amazing care of Emerson, keeps us continuously informed, and makes every effort to allow her to be like every other kid there – even voluntarily going beyond what we ask of them.

Riley Children’s Hospital:  Emerson’s doctor and nurses have been great.  Luckily, we have not needed them much outside of our quarterly check-ups but we always know they are available for questions, if needed.

Measuring cups:  We have worked extremely hard to achieve some consistency in Emerson’s BS.  It has taken constant attention to detail and we would not be where we are by estimating, so we continue to measure everything that she eats.

Our flashlight:  How else could we check Emerson’s glucose twice during the night and limit the chance of disturbing her?  The light on the PDM isn’t sufficient when you are trying to check with only one eye open!

Restaurants with nutrition information available online:  Like most families that have a member with T1D, and who struggle with consistency, eating out is a rare treat.  When we do decide to venture out, it is limited to a restaurant where we know nutritional information is available.  It is always much more helpful when it is accessible online, so we can plan ahead and be prepared upon arrival.  Of course, this means that we have to eat at a lot of chain restaurants, but at least we get to go out.

Capri Sun or other juice boxes:   Perfect for those middle of the night treatments as Emerson can more easily consume them even when half asleep.  They also tend to work quicker for us than most other options.  But most importantly, they can be followed by a quick splash of water to rinse away any sugary residue on the teeth, unlike with Skittles, Smarties, etc.

Our CGM…oh wait, we don’t have one – but if we did it would be a favorite tool of ours!  We many times perform finger sticks more often than necessary to learn what is happening with Emerson’s BS, as it can be very volatile.  It sure would be nice to be able to look at a CGM to get a better idea of which direction she is going.

The Roller Coaster That No One Should Ride

Life with diabetes is like a roller coaster ride.  As soon as you start getting consistent blood sugar readings (for Emerson that would be between 100 and 200 – a pretty big target right), something happens and the ride begins again.  Emerson has been pumping since June, and we are just starting to see more consistent readings.  But then, something like a growth spurt, sudden and prolonged activity due to visitors showing up or an issue with pod (aka her pump), can drastically send her low or high in a matter of minutes. 

We experienced one of those blood sugar roller coaster rides yesterday – the details of how it all unfolded are below.  We had a similar experience last week, so we learned to act a little more quickly.

6:45 a.m. – 189 (off to a good start)

9:11 a.m. – 126 (awesome reading considering the timing – did we conquer the post breakfast spike?)

12:04 p.m. – 177 (still doing good at lunch)

3:14 p.m. – 232 (much higher than our normal afternoon snack reading – we wonder about the possible causes but hope she is lower at dinner.)

5:59 p.m. – 415 (extremely high – we begin to become suspicious that it is a bad pod, but pray we are wrong and the big bolus will bring her down quickly.  Her pod isn’t due to be changed so we hope that it will make it the full three days.)

**Spent nearly an hour on the phone with the maker of the test strips reporting bad test strips, and finally I got them to agree to replace an entire bottle of test strips.

7:11 p.m. – 469 (wondering why the big bolus isn’t doing anything - something is definitely wrong but she must have gotten a decent amount of insulin if she hasn’t gone up much since dinner; now wondering if it is something else)

8:02 p.m. – 361 (ok, she’s slowly coming down, so we will give her a bath and then decide if we need to change her pod.)

8:50 p.m. – 353 (not coming down fast enough and a trace of ketones – time to change pod) 

**During the pod change, we injected the insulin into the pod and no beep (this happened early this week and the customer service representative at Omnipod told us to try a new pod), so we took out a second pod, injected insulin and no beep.  Finally, get a third pod to prime properly but it wasn’t sticking very well.  We taped the pod and applied liquid band-aid in loose areas and the pod seemed good.

9:04 p.m. – 346 (still not coming down quickly but no ketones – small snack and bolus)

10:23 p.m. – 391

12:24 a.m. – 409 (Late night pod changes usually mean high numbers but we are concerned that we might have to change the pod again.  Give correction and check again in an hour.)

1:24 a.m. – 333 (slowly coming down)

3:24 a.m. – 151 (yeah – finally, right in the middle of our target range)

6:17 a.m. – 102 (decided to do a quick check to make sure she didn’t crash before breakfast – of course, she was on track to be  low at breakfast so we gave her 5 Smarties and let her return to sleep)

6:56 a.m. – 118 (perfect again – hopefully, the day will be filled with good readings)

As you can see, life can get crazy in just a matter of minutes.  We still do not know what happened to cause her huge highs but we are guessing that maybe she hit her pod at school and it became kinked or loose (because this has happened before) or it just was defective, as there have obviously been other issues with multiple pods in the box. 

We are praying that diabetes will play nice this weekend and give us a weekend with good blood sugars – we sure need it!