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Common questions September 28, 2009

Posted by aydensmom in Uncategorized.
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I recently read a tweet from somebody that said “People who give out too much info… so annoying, why do I care if you’re a type 1 diabetic?” It was just a high school kid, but it really struck a chord with me becasue I hope as Ayden gets older he can be open about it and isn’t judged. As far as I’m concerned, the more people who know about it – the more people who can understand if he has a high or a low and can help.  

This is step two though. Step one is knowing about it and asking questions to find out more. So below are some answers to common questions I hear without the medical mumbo jumbo.

What is Type 1 diabetes?
Ayden’s body can not produce the hormone insulin. This means that he can’t process carbohydrates into the energy his body needs to function.  This is very detrimental to his health.

With out the absorbtion of carbohydrates, his body will start to use fat to power him.  The fat will break down into acids that are released into his system. These acids destroy his organs and eventually kill him. Insulin prevents this.

What is insulin?
It is the medicine Ayden has to take everyday, either by injection or insulin pump, to help absorb the carbohydrates he consumes. Insulin esentially changes the carbohydrates he eats into energy. But it is a fine balance between having too much insulin in his system and having too many carbohydrates in his system.

What is a low/crash?
This means that Ayden has too much insulin in his system and/or not enough carbohydrates. So his numbers are falling, sometimes to dangerous levels. Because of his age Ayden should maintain his levels between five and 10. If he drops below four, this is a treatable low. In this case, we give him apple juice to bring his levels up. The apple juice gives the insulin in his system something to work on, and if it works the first time it will bring his levels back in line within 15 minutes.

A low will cause Ayden to behave strangely. A diabetic suffering from a low can not think straight, and may appear sweaty and confused.

What is a high/spike?
When Ayden has too many carbohydrates in his system and not enough insulin his numbers can spike. If his numbers go over 15 for too long a period, which before the pump was often, his body might start breaking down the fat for energy. Releasing the acids into his system. When you hear about Diabetic Ketoacidosis, DKA, or a diabetic that was accidentally diagnosed as being drunk because of the fruity smell to their breath, this is what is happening to them.  Extra insulin should be given in order to absorb the extra carbohydrates and prevent the body from breaking down the fat.

A high will cause Ayden to get sick. Higher levels bring on stomach aches and headaches. But if he starts shooting ketones (starting DKA) he will act out, appear angary or confused and may not respond to questions or directions.

What do you do to help an unresponsive diabetic?
If you ever encounter a diabetic that is unresponsive, call 911. You can not determine if they need sugar or insulin with out doing a glucose test, which they may not let you do as they won’t be thinking straight. The most effective and safest way to help them is by getting them medical attention.

If you have any other questions, I’d be happy to answer them. Awareness is key. The more people who know, the more people who can help a diabetic in need.

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It’s been too long September 16, 2009

Posted by aydensmom in diabetes, insulin pump, Minimed, Uncategorized.
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I know, it has been too long since my last post. But I’ve been so overwhelmed with the support messages I received that I wasn’t sure what to write about next. Thank you to everyone who sent their thoughts and support to me. It is so nice to know you all are enjoying this blog!

Yesterday, we celebrated our four week anniversary on the insulin pump. Ayden got to have a special treat – the ice cream truck came around, so he went for a run with his dad to catch it, and he had his first rocket popsicle.

nutrition_popsicle_firecracker

They're called rocket popcicles where I come from

I think he ended up with most of it on his face and shirt, but he seemed to enjoy it.

For about a week now, we have been using the pump to its fullest. This has meant that Ayden can eat as much as he likes, and has also been able to have dessert with us after dinner.

The changes we have seen have been very positive. we haven’t seen a number over 14 mmol/l in two weeks, which is a first since he was diagnosed.

He has also been able to eat as much as he likes at supper. The first time we let him eat until he was full he was quite confused and kept looking to me to stop him from having another french fry. When he was full he didn’t say so, he just got down from the table and started playing, but kept watching me and waiting for the inevitable, “you have to come back and finish what’s on your plate”. I didn’t have to say this though, because we only bolused him for the minimal amount of carbs he was going to eat and then we gave him an extra bolus after he finished to account for the exact amount he ate. His levels stayed in range the whole time.

We have only had one really scary moment. Ayden’s levels dropped at night from some unexpected activity. He was only down to 3.8 (anything under four is treated as a low), but he was not thinking quite right. He wouldn’t let me touch him, and I had to force a finger poke on him to find out what was going on. He also didn’t want anything to do with the apple juice he needed to drink to bring his levels up. He was only asking for medicine and thankfully his dad thought to put the juice in a medicine dropper to get him to drink it. Once he had a few sips he started to come around, but it was the first time I seriously thought I might have to use glucagon on him.

Overall, I’m extremely happy with the pump. Little pleasures like being able to tell Ayden he can have ice cream and dessert and let him go and play when he says he’s full are realities for me. Thank heavens!!!!

Fear, frustrations, and anger…oh my September 9, 2009

Posted by aydensmom in Uncategorized.
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As much as I hate to admit it, these three little words do get to me and can consume my day if I let them.

The fear has been particularly bad these days because of the pump. Everyday someone drops me a note or sends me a tweet regarding the possibility of death for anyone on the pump. The latest and most worrisome has been a blog about a 29-year-old man who died because his minimed pump (the same one Ayden is on) went into prime mode during the night while he was wearing it. This caused it to empty his reservoir of insulin into him, causing an overdose. Considering Ayden’s pump carries 100 units and he gets 7 units in a 24 hour period, the concept of this happening is always in the back of my mind now.

I recently got a message form a lady who has raised a toddler with diabetes and this will be one of the things I will discuss with her. I met her through the Edmonton JDRF mentorship program. I think this will be a really helpful resource for me to deal with some of the challenges that are a bit overwhelming these days. At this point though I’m just trying to remember how much he likes it. 

What it’s like to do an insert: First you have to convince him – and then after about five minutes he’ll let us insert it –

10 days on the insulin pump and counting September 4, 2009

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Well it’s true what you’re told. It’s like bringing a newborn into your house that you have to feed and monitor on a regular basis. The difference though is this newborn lives and sleeps with my toddler – Ayden.

We’ve had two pretty rough nights. This means that we’re sleeping decently 80% of the time – success is relative in the pumping world.

The first time I had to stay up all night was because of problems with the reservoir and tubing. I think there was air in it and his levels just weren’t correcting , so I replaced the reservoir and tubing at 3:00 a.m. and finally got to sleep around 4:30 a.m. 

Last night was a bit rougher, because it was his insert that was giving us problems. this meant we had to wake him up and convince him to let us do a new insert at 1:30 a.m. We managed to convince him, but then he started having another fit after it was in. Why – well apparently he likes to pull the backing off the insert tape and stick it himself – and I thought he was crying because it hurt. Silly me! Ohhh well, next time I’ll remember. 🙂

Our training is fairly complete now, after three days of three hour sessions we are now supposed to know enough to manage this thing in coordination with our pumping team. My problem though, is there’s a lot of math that needs to be memorized and understood and I’m not good with numbers. So my weekend will be filled with trying to learn and memorize calculations for insulin to carb ratios, activity excarbs, insulin on board, and correction boluses. Sounds like fun doesn’t it. It’s at least a long weekend, so I should have some extra time to figure it all out – and I will…

I have to say though, after our first 10 days I have been very impressed with his numbers. They have been much more consistent that anything we’ve seen before. And I’m really enjoying being able to manage a high with the tough of a button, and not always feeling like I’m playing catch up with needles and long acting insulin.

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Worst experiances September 1, 2009

Posted by aydensmom in diabetes, insulin pump, Minimed.
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I’m interested to know what your worst experience has been since being diagnosed – something outside the normal high and low experiences.

Mine has been dealing with my backup pharmacy. We only have this one in place in case our normal pharmacy is out of supplies or we need something later in the evening. But, after yesterday, I’m re-evaluating this need and looking for other options.

I have to say that we have been going to the pharmacy for a year, and each time I go in it’s a fight about something. In fact, the first time I went in, the technician was so clueless about my needs or the needs of a type 1 diabetic that he forced me into getting supplies I didn’t need and then made me feel stupid for not knowing what I needed (Ayden was diagnosed two-days prior to that incident). It was a harsh lesson, but one that taught me about having to be the expert and not relaying on the expertise of someone else.

Then yesterday it was again emphasised to me how inept this pharmacy is.

We live in a small town so it is even more surprising to me that we get great service and awareness about his new insulin pump – a technology that is fairly new – than we did when we went into the Shopper’s Drug Mart.

Yesterday, I went in for some supplies and to get his insertions and reservoirs on order. I was there for 45 minutes and for each item I was discussing I had to argue and justify my need for it. First they tried to tell me they couldn’t order his pump supplies, which I was previously told they could. Second, they tried to sell me tegaderm that wouldn’t even fit on Ayden’s leg it was so big (after I gave a prescription for the size I needed). Third, they argued with me regarding my need for a vial of insulin and told me we would be wasting too much and that we should continue using pen-fills. If you have ever tried to draw up a reservoir with a pen-fill, you’ll know why I was needing a vial – pen-fills are pressurized and getting the air out of the reservoir and filling it from a pen-fill is very hard. Doing it this way cost me a night of sleep our first week on the pump, as his levels would not come down. Most likely because there was still air in the reservoir and tubing. Fourth and last, we have switched to a Contour meter which live-links to our Medtronic pump and they told me I couldn’t get strips with out a prescription for them. It took me about 20 minutes to convince them that I had a prescription with them, hence the ability to get insulin, and that I still needed the Precision Xtra ketone strips. The technician even tried to tell me I had a prescription for Precision Xtra ketone strips but not glucose strips.

Does anyone know if there is a place you can formally complain about a pharmacy such as a professional organization? I just hate the thought that any parent with a newly diagnosed child would have to go through what I went and have gone through with this pharmacy.

On the flip side though, I have to commend the fantastic people we deal with at our local pharmacy and I want to recognize the special effort that they go to each time we go in.