Our insulin pump is the best!

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

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

Fall happenings and pump update

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

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

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

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

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

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

First day of school

With the first day of school came a new diabetes schedule. Left behind were the late nights and sleep in mornings. We started the new schedule a few days before school started, but I still knew the lazy days of summer that fit her current diabetes protocol was sure to change with the active life of a new 4th grader. I knew she would be more active so the morning of the first day I reduced her fast acting insulin. Mid morning she had her provided snack, but at lunch time a bg of 70. 2nd day of school, reduced insulin even more, usual snack and a lunch bg of 63. On the plus side, bg's have been normal at dinner which means her dose is good at lunch as well as the carbs in her afternoon snack. Tomorrow I'll make another reduction to see if that helps with the low blood sugar at lunch.

Beaching it....

Vacation to Key West was great and the trip through airport security on the way back was much better than on the way there. Blood sugars behaved for the most part. We did have a few lows at the beach, but we were well prepared since we expected it.

Treating Lows

When I ask Alyssa what it feels like when her blood sugar is low, she says that she feels like she's shaking and her heart feels like its going to beat out of it's chest.  What I notice when she's low is that her face pales and although she's cool to the touch, she breaks into a sweat.  Also, her pupils dilate and her speech is affected.....it appears as though she's drunk.  Last night, just before bed she came to me and said she was low.  She was already treating herself with a juice box, as she had checked her sugar and it was 34!!  I sat her down and retrieved the Smarties from our supply cabinet and gave her a few of those after she finished the juice box.  This is always a touchy time because there is always the chance she'll lose consciousness.  The 15 minutes before re-check seems to last forever.  Then just as quick as the low came on, the color starts to return to her cheeks, her words become clearer and she says she feels better.  Re-check 92.  I gave her 4 peanut butter crackers.  At about 2:30 a.m., I checked again.....bg of 187. 

She had an 1 1/2 hour cheer practice earlier that evening, but her bg's were good before and after.  And what was crazy, was that at this time she was just playing on the laptop, nothing physical. She had a normal bg before dinner and ate really well.  Ughh....unpredictable!!

A Great Weekend

Riding 4 wheelers through trails and mud and puddles was not something I thought I would ever do. I wouldn't say I'm a girly girl, but I never really saw the need to play in the mud. Alyssa on the other hand is very versatile. She likes being a girl, playing with makeup, painting her nails; but she also likes playing with toy cars and out in the dirt.

So, yesterday, I agreed Lu and I would go with the boys to Busco Beach, an ATV park a couple hours from home. Alyssa love it and I have to say I had a lot of fun too! She rode a lot on her own and has gotten really good. My sons Phil and J are fearless and they got a kick out of mom's screams as we went over ramps and through the mud.

For the most part diabetes behaved. We had one low towards the end of the day and honestly four wheeling is a lot of work, so we checked periodically and stopped for extra snacks.

All in all, it was a great day with the family filled with some great memories!

Changes

The endocrinologist made a few changes to Lu's regimen because her hemoglobin A1C had gone up .2 since our last quarter visit.  Yesterday was the first day of the dose change and also her 3 hour cheer practice.  I was a little nervous to give her the higher doses with breakfast, but didn't want her to spike before the 10:30 practice time.  Her Lantus was increased from 9 units, to 10 units and her Novolog rate was increased from 1 unit for every 20 grams of carbohydrates, to 1 unit for every 15 grams of carbohydrates.  I gave her the updated dose with breakfast at 7:30 and on the way to practice, checked her blood glucose levels.  258 at 10:15.....we are back to those post breakfast spikes where the insulin is taking a little longer to kick in.  Practice immediately started with warm-up and practicing jumps.  After about 20 minutes of that, they started tumbling and that lasted about 30 minutes.  At 11:30, we did a recheck of her bg's and she was at 115.  She had a snack, apple slices, peanut butter crackers and low-calorie Gatorade.  They practiced their competition routine and around 1:00, she gave me 'the look', which I knew meant that she didn't feel good.  Re-check, bg's 62.  Quick juice and a snack and the timing was good because the team decided to take a break.  10 minutes later,she perked right back up and finished practice with energy left over.

Summer Schedule

I remember when I was a kid, the thing I looked forward to most during summer vacation was staying up late and not having to get up early in the morning. But when you have diabetes, its important to stay on a schedule. I have to admit, over the past several weeks we have slept a little later each morning so that now we get up between 7:30-8 as apposed to the 6:00 am alarm when school was in. And Alyssa is going to bed around 10:30-11 pm, when her school year bed time is 8:30-9... well she usually falls asleep somewhere around that time and we put her in her bed :)

I knew last night Alyssa had stayed up later than usual watching a movie. I woke up at 7:40 this morning, pricked her finger (she slept through it) blood glucose level was 147. I made her breakfast (3 little pancakes, sugar free syrup & a cup of milk is exactly 60 grams of carbohydrates), walked her sleepily into the kitchen and she started eating as I made her injections. I gave her her Lantus and Novolog and then proceeded with making coffee and cleaning up the kitchen. When I turned around, I noticed that Alyssa wasn't at the breakfast bar, so I went looking for her and this is where I found her.......

Tumble

Just an update on Alyssa's bg's.... This was her first tumble practice in 12 days. Before practice, her bg was 200.... She had a 15g carb snack prior to practice and drank a low sugar Gatorade throughout. At the end of 30 minutes of tumbling, blood glucose level was 83. Good bye high sugars from last week!! Still on summer schedule for cheer practice, so she's resting up for 3 hrs tomorrow. Happy that competitive cheer is year round :)

Summer Vacation

Alyssa has been experiencing post breakfast highs every morning this week except for today. Also, normally her bg's drop nearly 100 during the night and this week she's only been dropping about 50. (ie. before bed bg's were 200 and this morning 150)

The difference in this week and the others since schools been out for summer is that her cheer gym has been closed this week for the 4th. She normally practices cheer 3 hours a week and also has separate tumble lessons. So I'm sure the decrease in physical activity is affecting her levels. Back to it come Monday though :)

Life with T1 is definitely a balancing act.....

Type 1 Diabetes Misconceptions....

When you have type 1 diabetes you're pancreas does not produce enough or any insulin that lowers blood sugar and in many cases, glucagon, which raises blood sugar when it's low. Ultimately, a t1's body doesn't regulate glucose. So, I think there is a huge misconception that if you are diabetic that you can NEVER eat sugar... not true.... Anything in moderation... and as long as I test Lu's blood sugar and adjust her insulin dose to cover the extra sugar, there are no spikes. Also, believe it or not... there have been times sugar has SAVED HER LIFE!! 

Another misconception is that type 1 and type 2 diabetes are the same.  Type 2 can be linked to obesity, but that is not always the case.....in some cases it's in our genes.... and type 1 has no known cause.  Also, another fallacy is that diabetes is cured by insulin.  Insulin injections help keep diabetics alive, but is NOT a cure.  

Finally, many people think that diabetics cannot participate in athletics.  Not true... exercise is good for everyone.  Exercise does affect glucose levels, but as long as they are checked and precautions are taken, exercise can be very beneficial to diabetics by helping keep bg's within range.

Packing for Grandma's

Since Alyssa's diagnosis, the only people she has been left with are her two older brothers and her grandmothers.  On Thursday, my hubby and I will be leaving for the Florida Keys to celebrate our 18th wedding anniversary.  Ahhhh.....4 sun-filled days in paradise!!

Before Lu's DX, all I had to pack were her clothes when she'd spend the night away from home.  Now, packing takes much more preparation.

Alyssa's Packing List

*Diabetes supplies (meter, strips, lancets, alcohol swabs, syringes, & insulin)
*Emergency Kit for lows (Glucagon, smartie candies, and juice boxes)
*4 Breakfasts, 4 lunches, 4 dinners, and 24 snacks
 (I pack snacks and meals that I prepare ahead of time that have the exact amount of carbs that she needs for each meal)
*sugar free drinks & water bottles to mix sugar free Kool Aid in
*Schedule
(I type up her schedule and instructions for what to do in the event of highs or lows and add the emergency endocrinologist's number)
*clothes
*favorite pillow & stuffed animal
*games
*movies
*toiletries

Our car will be loaded down on the way to the airport until we drop her off.  What's funny is that everything that I am taking can fit into 1 rolling carry on bag!

Cheer Camp

Alyssa is on a competitive cheer team and this weekend she took part in her first cheer skills camp. Alyssa’s diabetes is very sensitive to extra physical activity, so this requires careful planning and monitoring as well as timing meals and insulin. This is because muscles use up glucose at almost 20 times the normal rate during intense exercise and can result in low blood sugar levels.

During her normal practices in order to avoid drops in blood glucose levels, we check her bg’s before class starts and if she is below 200 she has a carb/protein snack and she has a low sugar Gatorade on hand that has about 15 g of carbs. This snack and drink will replace the glucose slowly as she burns the glucose she has on board and holds her over through the 1 ½ hour practice. In the case of cheer camp, I knew the activity would be more intense and last longer. We checked her sugar when we arrived on day 1 and it was 212, she had a snack and about an hour in her bg was 200. At the water break re-check, her level was at 147, so she had a few grapes and more low sugar Gatorade. By the end of day 1 practice, her level was at 150. Day 2 started at 12:30p, so she ate lunch at 11:30a. When we got to the gym her bg was 300, but she had just eaten and had a lower level of insulin about 30 minutes prior. At the water break, we checked and her level was down to 200. She ate a few grapes and 2 peanut butter crackers. At the end of camp, her bg was 116. I knew her bg’s would continue to drop after the exercise stopped because her team had worked so much harder on day 2, so I let her have a little of the high carb snacks that were offered like cheese puffs, chips, grapes, and even a donut! I chose not to give her insulin and rechecked her bgs about an hour later…99...perfect... her body was still burning that glucose.  If she hadn't had that snack, she would have went low.

Alyssa is such a trooper. She didn’t complain about having her finger pricked 4 times extra because she was having such a good time… We have a longer choreography camp in a couple of weeks and I'm feeling a little bit better about it.

Math skills needed....

After dinner last night, Alyssa went in her room to work on a puzzle.  About an hour later, I went into check on her because she was too quiet and she was fast asleep in her bed....7:30p and way early for her?  I pricked her finger (she doesn't wake anymore) and the meter read 434...wth!!  recheck....413!  I calculated the carbs, she had eaten something she had eaten many times before and had gotten her insulin.  I woke her up and had her get in the shower while I made another injection.  Here is where math skills come in handy....

Oddly, Alyssa usually drops about 100 pts during the night...I'm not sure what crazy girl does in her sleep....but normally I try to make sure her levels are between 180-200 when she goes to bed.  Alyssa's correction rate is .5 units for every 50 over 150, but since her bedtime goal is around 200 and I wanted her to drop about 200 pts., I gave her 2.0 units.  Another problem, sometimes the insulin brings her down too quickly and she feels the affects of a low even if she is not (and if she doesn't eat as well).  So, I also gave her a 15 g carb snack.  I estimated with the insulin and the snack that she would wake up with a bg of about 150.  This morning....the meter read 136... pretty darn close!!

I'm not sure where this spike came from (I searched for evidence of a secret snack, but didn't find any??) I think its instinct to want to find the culprit, although there may not be a tangible one.  I mean really, there is no known cause for this disease so it's understandable that there is no known cause for occasional spikes or lows.   I try not to stress too much when situations like this happen, but its hard not to when your a control freak like me :-/

Packing for the Pool

Packing for the Pool

Today we are celebrating my son’s 17^th birthday with a family pool party at my sister-in-law’s home and as I prepare for the afternoon, I realize how much goes into preparing for Alyssa. This has become second nature and has become part of our ’check off list’ before we leave the house. This prep is not only today, this is anytime we go anywhere. Another reminder that diabetes doesn’t take a break.

In addition to packing sunscreen and beach towels, we have to pack a bag full of diabetes supplies. In her backpack: bg meter, strips, lancets, alcohol swabs, insulin, syringes, juice boxes, glucagon emergency kit, snacks, water bottles, and candy.

Alyssa is a very active little girl and rarely takes a break; and because we are going to a party where there will be swimming and lots of play with cousins, the chances of low blood sugar are very likely. On the upside, she’ll probably be able to enjoy a piece of birthday cake without an extra injection!

3rd Annual Diabetes Blog Week: What its like to have Type 1 Diabetes

What it’s like to have Type 1 Diabetes

Managing type 1 diabetes is a balancing act. This daily stabilization of blood sugar levels depends on the four injections of insulin in which the amount is based on food consumed and physical activity through out the day and night. Blood sugar levels have to be checked 6-8 times a day and there is constant worry about highs and lows, which can both be dangerous. Type 1 does not go away, it doesn’t take a break. Type 1 is on your mind constantly and you can never forget about it. It’s a 24 hour a day, 365 days a year job.

A day in the life of Alyssa:

6:15a Wake up, prick finger to check blood sugar

6:30a 2 insulin injections

Eat breakfast

9:30a snack

11:50a prick finger to check blood sugar

1 insulin injection

3:00 p snack

4:30p prick finger to check blood sugar

Cheer/tumble from 4:30-6p

5:45p prick finger to check blood sugar ½ way through practice

If low (usually) treat with juice

6:30p prick finger to check blood sugar

1 insulin injection

Eat dinner

9:30p prick finger to check blood sugar

Eat bedtime snack to avoid lows during the night

*Depending on how her bg’s have been there may be a blood sugar check in the middle of the night. Also, if she is more active than usual, there may be other blood checks during the day.

3rd Annual Diabetes Blog: What can we improve on...

What can we improve on….

Well, I’m not sure there is anything that we can do better. Most problems we have with Alyssa’s D1 is out of our control. No two days are alike; but lately, for the most part there are more good days than bad. Now, of course this disease is ever changing and what is working now, may not work a few months from now. Things have been going well recently and I think this is because we have a consistent routine of checking blood sugars and calculating carbs. I have found in the last year and a half, that consistency is a must. If she eats the same amount of carbs at about the same time each day for her meals, then her BG’s are normally within range. Of course there are times that her BG’s are low or high and that is usually because of extra activity or if we’ve gone out to eat (I’ve found most restaurants’ nutrition information is not always accurate).

Diabetes Blog Week: One Great Thing 5/15/2012

Managing Alyssa’s diabetes is a lot of work and I do find that I become obsessed with glucose levels and calculating everything that she puts in her mouth.  It can become the center of your life; like many D-moms, Alyssa’s diabetes is the first thing I think about in the morning and the last thing I think about at night. 

There are many times I feel overwhelmed and get frustrated when her numbers aren’t good or when she suffers with a lows.  And then I remember I’m not the one with the disease.  What I do try to remind myself is Alyssa is a child and she just wants to be like every other almost 9 year old. 

It’s impossible to be perfect, but there are many things that she does spectacularly!! Alyssa knows when she isn’t felling right and she will immediately go for her meter and check her BG and she’s not embarrassed about it…she’ll pull it out anywhere.  If it’s low, she goes for a juice box and a lot of times she’s treating her low before I even know what’s going on. 

This has helped lift some of my fear—I don’t stress as much when she’s playing outside or when she’s at cheer practice because I feel confident that she knows to address any change in how she feels right away.  More importantly, this has given Alyssa the opportunity to be more like other kids her age.

Diabetes is Ugly

Diabetes has been showing its ugliness.....The last few weeks have been a roller coaster for Alyssa's diabetes.  The week before last, I got a call from school 4 out of 5 days saying that Alyssa's glucose levels were high....300 + every morning at around 8:30a.  She eats breakfast at 6:30a and gets 2 injections (regular insulin and then a long lasting insulin).  So, her sugar should have been within normal range 2 hours later?  Over that weekend, her levels were great!  Last Monday, I decided to up her regular insulin .5 units (a very little) and I got a call at 8:30a saying her sugar was low. ughhh...so on Tuesday, I backed down the dose....8:30 ~another call and low!!  Wednesday and Thursday, the same thing.  Weekend was pretty good, a few highs but in the low 200's and likely because she snacked a little more.  This Monday morning, a call at 10:00.... sugar was 59! Lowered insulin from her normal dose and Tuesday no call!  Thought we were in the clear! Wednesday was an early release day, so I kept her home from school because it would mean she would have to eat lunch at 10:45a, which throws her whole schedule off.  Levels were great!  Yesterday, call at 10a, sugar 300!  What the heck!!  Today (Friday) same thing!  I swear, I'm losing it!  What is insane is that these extreme lows and highs are effects of a minute amount of insulin!  The picture below (on the left) is the actual syringe scale.  She gets 1 unit for every 25 grams of carbs, usually 2 1/2 units.  So,as you can see, 1/2 u is a tiny amount. 

Those of you who know me and Alyssa know that I am borderline obsessed with managing her diabetes.  I measure EVERYTHING she eats and have learned to adjust for her activity levels.  Thank God we have a great Endocrinologist!  I know I've called and emailed her 10+ times.  Finding that perfect dose has been a challenge and unfortunately what worked one day, has not been working the next!

I'm at the point I think there is another culprit besides the pancreas. I know stress can elevate glucose levels. The blood sugar of type 1 diabetics can increase when they’re stressed because of the production of stress hormones. In most people, these hormones help improve the body’s stress response because the liver releases more glucose for additional energy. For diabetics, however, this extra glucose can result in a dangerously high blood sugar level.  My husband was in the Middle East for 2 weeks, and I know she missed him.  I tried to keep as much from her as possible, but she knew that he was in dangerous areas at times.  Now that he's home, I'm hoping things get back to normal and that her glucose levels balance.