Friday, November 13, 2009

Little bursts of honeymoon


What's a honeymoon?

It's a little break from Diabetes. A type 1 can expect that at some point in their lives, their pancreas will magically kick back in for a period of time. Often it can follow an illness, ironically, much the same way that diabetes follows an illness. The "Honeymoon" as it's called, can last anywhere from a few hours to a few months, even a few years in rare cases. Imagine that, as a diabetic, you wake up one morning and your diabetes is in remission! No more shots, no more carb counting, no more 2am lows as you awake covered in sweat, disoriented looking for anything with sugar in it. Or that morning high blood sugar where you feel like you want to crawl out of your skin, the same skin that you have to plunge a syringe into to get control. A honeymoon is a little slice of happiness and confusion rolled into the same package.

Diabetes is a condition of routine. You eat what you eat because you've pre-planned what your sugar will do. You eat when you eat because that's what you've planned for with your insulin. Variations in any number of factors only leads to chaos and correction, which is why so many of the diabetics in the world are resistant to try newer, more advanced insulins, pumps, CGM's, etc. Change means uncertainty, uncertainty leads to stress, and stress leads to more uncertainty, all of which mess with your sugars and challenge your sense of control.

It would seem from all of the above that a honeymoon would be a romantic breakaway with any food you like, whenever you like, a full night's sleep (WOW), a untethered second helping of dessert maybe....hmm that does sound good. In reality however, for a caregiver of a diabetic at least, it's kind of like driving into the setting sun. It's gorgeous but you can't see a damn thing and you're not quite sure when it's going to end, just that it will. Every parent has this little flicker of hope during the honeymoon that maybe it's gone for good, but inevitably the highs come back and the glimpse of the cure fades.

Let me clarify that I don't mean to imply that honeymoons aren't great things. They are awesome for the diabetic I can assume. Come to think of it, maybe it's actually just hard on the caregiver as you're always looking on a map that you can't see. Maybe for the owner of the disease it's something you can feel?? I'd love to hear opinions on that foresure.

So, on Wednesday and Thursday we are on day 4 with a leg site on her, which only ever lasts until the 3rd day...and she's had 55 carbs of unbolused correction to handle sugar at or below 4.0mmol/L all day with a 30% cut of basal. It's stressful for us but such a nice little treat to see her system actually working. It shows that theres hope that one day we can hack into and crash the program that tells her islets to stay on the sidelines. I would LOVE to see them to come off the bench for a little longer.

8:30am 13.6mmol/L with 0.25 to correct, back to routine, thanks for the honeymoon.

b.

Monday, November 2, 2009

Animas Ping...first weekend review


Cadence's new insulin pump arrived at the office on the weekend! The much awaited Animas Ping!

My review of "the new hotness":

The Animas Ping is Johnson & Johnson's newest product for diabetes, updating a great previous model in the animas 2020. Cadence has been pumping with the 2020 since March of 2008 and we've never regretted our Animas decision for a single day. Awesome company lined with an incredible device. The Ping was a bit of surprise release as the blogs, boards, and tweets all predicted that an Animas/Dexcom integrated product would be the next release but that has lost quite a bit of attention. My intuition tells me that they can't find a way to integrate an infusion set with a CGM sensor from a cost effectiveness standpoint and also how to make them last/fail at the same rate. Likely a hurdle that can't be solved in the short term, but I digress.

The Animas Ping is a swank new sparkle pink color (or green, or silver, or blue etc), and a bit bigger, probably 1cm longer than the 2020 predecessor. Aside from a small size difference, the guts of the pump are relatively unchanged. The display and readout are similar with some additional customizable features with sounds/alerts than what was offered on the 2020. One thing that Animas neglected was to add the IOB onto the home screen. This was a much talked about miss that the bloggers/boards discussed 2 years ago regarding the 2020 was that you had 3-4 screens to go through to get to the Insulin on Board. As any pumper or parent of one in our case, the IOB is just as valuable than seeing the current basal rate, especially for temping.

The magic of the Ping however, is the wireless function of the OneTouch Ping glucose meter. You literally have a remote display of the pump in the glucose meter. You can bolus from the meter without having to fish the pump out of yours or your running like mad toddler to push buttons. She can continue to run laps around the kitchen with a crayon coloring the drywall while you sit in a chair and casually bolus for her dinner....so to speak :-) . For those operating their own pump, the big advantage is discretion in that you don't have to reach into your clothing to remove the pump, you can do everything via the meter.

EXCEPT: change your basal rate, or temp your basal! That's right, you can bolus insulin but not change basal rate unless you have the pump in hand. (Yes, you read that correctly.)

With Cadence, we probably temp her basal rate at least 1x day if not more depending on sugar and activity. To not include this option onto the Ping meter can only be described as an EPIC FAIL. So we still have to fish the pump out while holding her down to tweak the basal rate. I'd love to know the reasons behind leaving this feature out but likely it was a time to market decision. Hopefully this is fixed soon with a software update. When we ordered the Ping I didn't even research as to whether this would be included.

This massive gaff in R&D judgement aside, I can't even begin to describe how much we love the new Ping. Proof in the pudding was at Cadence's Halloween party, her pump was buried under layers of princess costume and we never had to interrupt her play sessions other than for a quick blood test. The discretion that being "wireless" with the pump provides is just so valuable. Especially now as Cadence realizes that she's a bit different from everyone else. More proof of that was at each house she trick or treated at she followed the treat with "I don't wike candy..." and walked down the steps. It was hilarious to say the least. For her social circle though, for the other kids to not see a device connected with tubing to her body 24/7 is valuable enough for her self esteem to warrant the cost of the upgrade from the 2020.

Overall, this is a tremendously good product that is long overdue. The Ping pump carries the same great information and user friendliness found in the layout and function of the 2020 pump. The Ping blood checker works as well as any other OneTouch meter and the menus are easy to navigate and the setup between the pump and meter is very intuitive.

For those on the fence regarding an upgrade, in my opinion a worthwhile one indeed. For those contemplating a pump for yourself or your child, the Animas product is as good as they come!

B.

Tuesday, September 29, 2009

The gorilla in the room...


The 2 most common questions:

1. How is Cadence, have you got the diabetes under control?
Answer: As of her last check an hour ago, she's under control.

2. Does Hailey have it yet?
Answer: No...I hope not.

Nic and I were hit from all sides on the debate about more children after Cadence was diagnosed with Type1 diabetes after just finishing a 6month bout of colic.

"You have enough on your plate"

"You guys really need to have a good baby next time"

"Why take the risk, what if the next on gets it?"

There's something about the constant puking, green poop, and long nights pacing the floor that the SMILE when I say "Hi Baby Hailey" doesn't completely erase. It's all worth it man to see her just so happy to be.

I find myself unconcerned for the most part about whether or not Hailey's islets cells are slowly shutting down. There's no way to know really, just wait until the Gorilla in the room (you see the analogy I hope) wakes up I suppose...if it does at all. The other day I went to check on her in the middle of the night and the diaper was absolutely full and she was very hungry/thirsty for milk. What was my first thought? Of course it was: I wonder what her blood sugar is....but i never checked. Change the diaper, give her some milk, and head back to sleep and hope that in the morning the diaper is bone-dry, which it was.

The truth of it is that for kids diagnosed under the age of 10, the risk of a sibling developing the disease is less than 1.5%. Is a 98.5% chance of a perfectly normal little baby/child worth the risk. That smile answers the question every time, you bet it is.

Friday, September 18, 2009

Finding comfort in the unfortunate.


We had a wonderful night tonight.

Cadence had a tantrum, pee'd on the floor, splashed the pee-puddle onto me, pooped in her diaper, Hailey puked on my shoulders, arm, foot, shirt, shorts, and shoe, and we had a blast with "baby JJ" who only filled one diaper and his lap with food.

Two friends of ours became much, much closer friends. Two children that have only had one meeting now have a lifelong link. Diabetes is like any other disease in that it has no preference for who it affects, nor does it care how many it affects. It can't however choose who fights against and who they fight with.

Tonight was a rebuttal of sorts to the lurking "D" that we meet everyday and hate each time. Jeff and Karen remind us so much of us and JJ reminds me so much of Cadence a few short months ago. The link between Cadence and JJ was uncanny, at least from Cadence's perspective. Someone with diabetes......let's talk jibberish and figure it out is what they shared. Cadence knows she's different and knows JJ's different...that bond is forever.

It's amazing to watch a child have an injection of insulin. The ultimate of love-hate. You see the squint and tears but rejoice in the fact that the facial expression ensures another 4 hours of diabetes bliss...good sugar. Then the check, the discussion, the decision, the half hour in bed wondering if you made the right choice, only 90 minutes to sleep before the next decision.

It's unfortunate that our families are drawn closer as a result of our Children's misfortune but I can't imagine a better reason for families to come together than that of mutual support and dedication to our Children. We sadly welcome JJ to the D-family and wish he and his wonderful parents nothing but good sugars and a cure down the road and we couldn't be happier to have good friends to be good friends in the good bg's and bad. J-K-J had a hell of a week that we wish upon noone, but have handled it with incredible poise. We've done what we can tonight but hope they know that there are others out there and we are just a phone call away at any time of the day of any day. Diabetes never rests, nor will those that battle it. The bond that we share is a lifelong struggle for future generations and what more noble cause than that.

9.7 with 0.35 onboard....another 4 hours of peace.

b.


Tuesday, July 28, 2009

Ping me.


We quietly passed over Cadence's 2-year anniversary of diagnosis, July 19th. Funny how life-changing that day was. Now with a 2.5 year old and a 13 week old baby, we just let the day go by without any of us realizing it. A sign of moving on?

Speaking of moving on! We're pretty stoked at Casa de Kane. Cadence is going to be getting a new pump this year!

Cadence started pumping on March 31, 2008 and her life forever changed for the better. We, almost instantaneously gained better control, ensured a better life for her, and as a parent felt empowered to effect her diabetes in a meaningful way. I still can't emphasize the importance of this technology for a parent of a diabetic child.

We went through so much research when deciding what pump to get Cadence. Fortunately we chose Animas for Cadence and we still couldn't be happier with the decision. They have finally released a new product called the Animas Ping. What we now can do is deliver boluses of insulin, tweak basals, etc without having to fish her pump out of her clothing. As she runs around at a mile a minute, chasing her with the tubing hanging out just isn't working anymore. We're excited to have wireless control.

Had we gone the Medtronic route...we'd still be over-promised and under-delivered.

B.

Cute diabetes moments...


I woke Cadence up at 4am this morning with a 3.0 blood sugar. This was after a juice before bed that we only covered half of the carbs for. New infusion sites these past few months, one low day, one perfect day, one high day...rinse and repeat.

So, I took Cadence to the driving range for the first time yesterday, with her new set of US Kids golf clubs, including the BIG DOG. She probably bashed her way through a large bucket on her own before stating "time to go home dad." My Mom was with us and bought her a Big Dog headcover for her driver (Big Dog). So when she finished her juice at 4am, we had to make sure the "Big Dog" was under the covers with her.

Cute.

B.

Friday, June 5, 2009

A new life of questions


We had a new baby girl brighten our world on April 27th!! Hailey Grace is her name and she's a wonderful little girl. The nights are long but there's always coffee in the morning to make sure the day goes smoothly.

My conversations with people take a turn that I suppose I didn't foresee. The first question people ask me is: "is there any sign of diabetes?". It's a totally fair question I suppose. It highlights, at least partially, the misunderstanding out there about the disease. Many people, through no fault of their own, don't know that there is a difference between Type 1 (Juvenile) and Type 2 diabetes which is often a result of lifestyle issues. Many don't know that Type 1 diabetes a silent disease and there are no warning signs of any kind. Cadence is a perfect example of that in that she was healthy one day, within 24hours she was fighting for her life...both of her parents, who are physicians in their own right, had no idea what happened to her system in that time span until the ER doctor told us.

So, are we concerned about Hailey? No more than any other parent of a new born would be I suppose. Right now she's perfect and we have no reason to think that she'll ever be any different. There's no question diabetes will be at the back of our minds as she grows but we don't expect that she'll contract it. What's funny right now is that feeding is so easy with her in that we sort of feel like we're missing a step. So....no blood checks or pre-bolus...we don't have to weigh the breastmilk and count carbs?? Kind of seems all to easy!

Welcome to our family baby Hailey! :-)

Tuesday, March 10, 2009

Moral responsibility or occupational guidelines - the dilemma of action


Who let it be March already?  Woah.

Sorry to my readers for the lack of posting, I'd like to come up with a bunch of excuses but truly it's just out of sight - out of mind with a pinch of laziness that brings me to my first post in 60+ days.  Nevertheless, off we go...

We took a trip to Phoenix in January to visit the grandparents.  We ended up in the Emergency room the 2nd night we were there with Cadence vomiting profusely and her sugar plummeting despite our best efforts.  Ambulances, Sheriffs, flying down the highway to the nearest hospital was not the way we intended to begin our vacation obviously.  We were treated well and by the next morning, Cadence was doing much better with some IV fluid in her system.  I had to use glucagon for the first time since her diagnosis as well.  Glucagon is an emergency measure for diabetics.  It's an injectable substance that will cause the patient's liver to dump emergency sugar storages into the blood stream.  It's designed to be used in a non-responsive diabetic. 

We got home at 7am, fell  asleep, woke up about 9 am and we were all tired and hungry.  Cadence had a normal breakfast for her, we bolused her the same as we would for any other day....food and carbs in a diabetic usually means they need insulin.  As we were heading out to get some errands run, I looked over at Cadence and she didn't look right, checked her blood sugar and she was in the 2's.  After a juice, fruit bar, banana, and 2 more glucagon shots she was still sitting at 3.2mmol/L and lethargic.  We were scared and out of glucagon.  We raced over to Wal-Mart to get some more of the glucagon.  

Cadence was slumped over in Nic's arms, her sugar falling again.  We ran into Wal-Mart right to the pharmacy.  I announced to the pharmacist, "my 2 year old daughter is a type 1 diabetic and his having an insulin reaction, I need glucagon for her to bring her out of it."  The pharmacist looked panicked and went over to her the manager of the pharmacy to find out where it was.  He shook his head and walked away (no I'm not kidding) and the pharmacist came back to us and said, sorry we can't do that for you without a prescription.  I showed her the diabetic letters that we travel with, the almost empty container of glucagon, and Cadence's pump.  Meanwhile Cadence is slumped over in Nic's arms  drooling on her shoulder, sugar sitting just below 4.

I said to her and loud enough that the manager would hear, "would you take a prescription over the phone from her endocrinologist, we need this for her!"  He said yes, so I phoned the Children's hospital on my cell and got a hold of Cadence's endo.  After a minute or two on the phone, he hands it back to me and says (no I'm not kidding) "I can't take this from a Canadian doctor, good luck."  And walks away with my 2 year old slumped over on Nic's shoulder.

So...what would you do in his position?  Would you leave a 2 year old little girl to the mercy of her disease in order to follow your protocols or do you make what seems an obvious choice to help her? What if you thought your job might be in jeopardy?  Could you justify to an employer that the patient was in obvious distress, proven to have the condition stated, and needed help?  Does a good samaritan action override a "policy" designed to cover your own ass?  It's not an easy question.  I told him what I thought of his decision, as did his staff but in retrospect...it had to be hard for him, at least I hope it was.  If it were me, I'd break the rule to help a child in need but I come at that answer with a significant amount of bias.  At very least I'd offer options "I can call you an ambulance" would have been a nice gesture vs. "good luck".  

Now the question needs to be answered, why were we not on our way to the hospital in the first place?  Ah, another ethical question that I have asked myself.  The issue was that our travel insurance would not cover us for a second visit for the same diagnosis.  Meaning that if we showed up at the Emergency room again for a diabetic insulin reaction, we would be uninsured. I don't have 10,000 or so to cover an ER visit in the US.  So my judgement call was that if we can keep her sugar above 3.0 and she's not vomiting up the carbs we give her, she's would not be in immediate danger.  What would you do?  Did i make a decision that possibly put Cadence in jeapordy even though we were monitoring her extremely closely?  Does our background as medical professionals help us in reaching this decison?

We went to the ER to get a prescription from the attending doctor for glucagon, while Cadence slept in her car seat in the parking lot, Nic checking her blood sugar every 20 minutes to make sure she stayed above 3.0mmol/L. If we bring her in to the ER, they admit her.  I tore myself up deciding if I was making the responsible decision.  I filled the glucagon prescription at the pharmacy and never had to use it.    It still sits in the fridge or the diaper bag just in case.  So, I was vindicated, I made the call that saved us money and didn't jeopardize Cadence...or did I?  

These are examples of no-win situations, thankfully the decisions we made produced a favorable result.  Fodder for discussion though and we chat about it often.

As a side note for parents of and diabetics travelling in the states.  Make sure that you have a plan for an emergency.  We have  standing prescription for Cadence in Phoenix now for glucagon, so if we are ever down there and need a backup, we can get it.  If you're in Mexico or something like that?  Make sure you have enough emergency supplies to see you through it.

B.