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.

1 Year Anniversary

It is hard to believe but February 8^th, 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.

Overcoming the Impulse

Last weekend we took Emerson to see Disney on Ice while it was in Indianapolis. We knew with her love of princesses and curiosity toward ice skating that this would be something she really enjoyed. What we tend to forget about when going to things like this though is how difficult it is when the vendors come around selling things like cotton candy and shaved ice in pretty princess cups. While a benefit of being on an insulin pump is the added flexibility and enhanced ability to manage such scenarios, we keep Emerson’s consumption of treats pretty limited. In fact, we generally only allow her to have special treats (candy, ice cream, etc.) once a week, which we have been able to do with very little issue because Emerson has always been a very good eater and likes a wide variety of foods. It is not that we don’t want her to enjoy being a kid, but her BG has been extremely volatile since day one and we do all we can to keep her in range. So when attending things like this there is always the dreaded food vendor that pops up out of nowhere. We are fortunate that Emerson does not make a big deal about not having these things like the other kids, but it doesn’t make it any easier as we know that it is times like these that make her hate having T1D. We take these opportunities to talk to her about the importance of a healthy diet but it doesn’t take away the heartbreak of her seeing other kids getting things that she is unable to enjoy without getting insulin and the after effects of so much sugar. We are hopeful that helping her to maintain a good diet now will make it easier for her to continue to eat healthy once our ability to control and then influence how she eats is a thing of the past.

We do expect that we will become more relaxed about the occasional splurge in the future. Our experience over the recent holiday period allowed us to see that we can keep her BG relatively stable even when deviating from the normal diet. After 10 months with T1D, we decided to allow Emerson to eat some of the normal holiday treats, but not without a lot of apprehension. She thoroughly enjoyed consuming cookies, cupcakes, and pie over a two week period around Christmas. After surviving the season and looking back we were happy to realize that while we did have the occasional spike and subsequent low, there was virtually no difference in her average daily BG during that period when compared to the weeks before and after. This gave us a good deal of confidence in our ability to effectively dose for these types of foods and keep her somewhat in control. We had an appointment with Emerson’s Endocrinologist right after the holidays and found that her A1c had increased slightly since our last appointment. The doctor immediately thought that this was due to the holidays but we were happy to be able to say that we felt it was not due to that but rather a 10 day stretch that saw numerous periods of elevated BGs due to repeated issues with our pump.

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.

Post-Breakfast Spikes

We are now 8 months into the search for consistent blood glucose for Emerson and while we have made some gains across most times of the day, the after breakfast period still remains a huge challenge for us.  We have seen readings all over the board at mid-morning checks, but mostly they are above the target range (100 – 200) and quite often, substantially higher than the upper threshold, evidence of some serious postprandial spikes.  We have tried some different approaches but are dealing with a few factors that are increasing the level of difficulty.  The first of course, and one we suspect many of you experience, is the type of foods that Emerson likes to eat for breakfast.  While we have made great strides to incorporate foods that are better for her, she still likes her Cocoa Krispies, Fruit Loops, and other sugar-laden cereals on occasion.  Our second challenge is associated with the timing of many of her mid-morning glucose checks.  During the week, when she is at pre-school, the kids are given their morning snack at 9:00am, or soon after.  Emerson usually doesn’t finish eating breakfast until close to 7:30am.  So her mid-morning glucose check occurs only an hour and a half after breakfast, which we don’t believe is enough time to really see the full effects of her breakfast bolus.  We have recently begun to slowly adjust the timing of breakfast to create a bigger window between these two.  While this will likely have some benefit, we don’t expect it to be the full solution given our experiences.  On the weekends we usually have a snack closer to 10am.  This has some impact (avg mid-morning weekday reading = 258, avg mid-morning weekend reading = 196) but doesn’t result in readings that are consistently where we would like them.

So how do we currently manage this period of the day?  It should be mentioned up front that Emerson does not have a CGM, so in order to get a true sense for what her glucose is doing, we have to perform more frequent finger sticks, which we obviously try not to do very often.  She has however been a pumper since June, when we chose the OmniPod as her lifeline.  This introduced some flexibility in what we could do with her basal and gave us the ability to more aggressively attempt to eliminate the morning glucose spike and overall inconsistency.  After considering some things others were doing we decided to try the super bolus approach.  So we added a couple hours of basal to her breakfast bolus and cut her basal down as low as possible for the hours following breakfast – which on the OmniPod meant a .05 basal rate.  At the beginning we were generally pleased, as we saw less lows at lunch due to the lower spike and subsequent late morning crash and improved overall consistency.  We made some minor adjustments over time but just weren’t finding the consistency that we would like.  Recently, however, we reached a point where we noticed some difference in her readings depending on what she ate (e.g. high sugar cereal vs. oatmeal).  So we planned to more closely track this for a period of time to see if we didn’t need to create different formulas to figure breakfast boluses depending on foods consumed.  Soon after, Emerson had a quarterly appointment with her Endocrinologist.  Her A1c had improved significantly, much to the delight of Dr. Hannon.  However, the improvements that we have made across the day now made the mid-morning readings look like a flashing red light.  We discussed the challenges and some things to try.  She suggested we try to include more protein at breakfast to slow the digestion of carbs, thus reducing the spike in glucose and hopefully improving consistency throughout the morning.  We were willing to give it a try, although didn’t have high expectations.  On the first day we did everything the same – except gave her a banana and peanut butter instead of the normal fresh strawberries and blueberries.  At the time of Emerson’s mid-morning snack I got a call from her pre-school…she was at 95 when they tested her.  Per our agreement with them, they treated her.  However, when they tested her again she was at 75?.  This was the first time they had experienced this so were understandably a bit worried.  We were shocked – it appeared the addition of the protein – via the peanut butter – worked much better than we assumed it would.  We figured the use of a super bolus with the added protein meant she now got way too much insulin.  We would need to obviously make a change to her breakfast dose tomorrow but were very encouraged by this.  Since that time we have constantly made adjustments to her breakfast I/C ratio and the super bolus amount.  We are now back to the same parameters as the day she went low at her mid-morning check but have not had that repeat itself.  On the majority of days we have experience the same mid-morning spike that we thought for a moment we had conquered.  Back to square one.

We are hoping somebody has mastered this period of the day and might be able to provide some guidance to us and anyone else that might be having the same struggles.

Has anyone had similar challenges and been able to overcome them in a child of a similar age (4 yrs old)?  If so, is there any advice you would be willing to offer?

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!