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Ignorance October 27, 2009

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I had to openly laugh when I read this letter to the editor a fellow blogger had posted:

On Oct. 3, myself and my girlfriend were eating lunch at Burger King. A family came in and sat across the aisle from us. While the father was ordering food, we were shocked and appalled to see a boy inject himself with whatever medication, in front of God and everybody all while sitting at the table. We found this extremely offensive. That sort of business should be done in private. How about a little respect for those around you. Other than the obvious fact that it’s not sanitary for those who use the table next, you have no idea how something like that can affect people. People go through a lot in their life and things like that may bring up certain feelings and memories best forgotten. I would like to thank those that day for totally ruining my meal. Blogger’s response


Those of you that know me, know this could have very well have been my family sitting across from this poor unsuspecting diner. And quite frankly, I hope it was!

Ignorance and shame are the hardest obstacles we have to deal with in the world of diabetes.  People who think we should hide in a bathroom, in my opinion, should have to go through one day of multiple daily injections, so they can begin to understand what it must be like for the child that has to live everyday with diabetes.

This gentleman had the gull to thank the family for ruining his meal. Well, I’m sure he doesn’t know how a child’s meal is scrutinized everyday to try to balance their needs with the necessary amount of carbohydrates that are required for him. In most cases this means no pop, ice cream, or other desserts. And God forbid your child likes and wants ketchup. These small items are a luxury for a child with diabetes and can ruin his or her meal on a daily basis. So I’m not too upset that this person missed out on one burger. As for what he’s been though in his life that made him this selfish and inconsiderate, I will guarantee it is nothing compared to eight to 12 finger pokes a day, multiple shots of insulin – where the sting of the insulin hurts more than the needles, the stomach turning side effects of a high and the fear and headaches that come with a low. Not to mention comparing his struggles to being a mother that has to hold herbaby down tostick them so that they can live.  

Anyone who does have a concern with my family and our practices of treating Ayden in public – in full view of everyone in a restaurant,  I encourage you to approach us to discuss why we’re doing what we’re doing. My goal is to respond to every question with information and dignity. Just keep in mind, I’m still a mother of a diabetic child and I will respond accordingly to how my child is made to feel and I will not tolerate my child feeling any shame.

Things that make you go huh??? October 20, 2009

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 Over the year, I have learned that it is important to do your research.  Because of my research we have been able to solve some problems with numbers and learn about opportunities that are available to us. Most importantly though, I have learned to look at everything with a sceptic’s eye. Hope is important, knowledge is valuable but expectations can be detrimental.

Below are some links to information that has come out in the past week. There are lots of new research papers and facts that put things in perspective.

New technology to painlessly measure glucose levels in the human eye shows promise of one day replacing the finger-stick blood test.

Is a cure already here?

Children who have had an episode of diabetic ketoacidosis, a common complication of diabetes, may have persistent memory problems.

The 21st Century Epidemic – Two million Canadians have been diagnosed with the disease

Diabetes epidemic worse than thought

The holiday season starts October 13, 2009

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I hope you all like the new look to the blog. Ayden is obsessed with the moon these days, so I thought it was an appropriate theme.

Last year was our first venture into the holiday season with a diabetic, and now its starting again. I hope the pump will make things easier this year – especially when managing his intake of all the pies and snacks that are available.

This weekend was Thanksgiving and the pump did make things easier, but not because Ayden had access to a lot more food. Rather he recently stopped eating as much as he normally does. At lunch and supper he has been eating about 15 to 20 carbs, his regular amount is between 30 and 40. In addition, we were chasing lows all weekend. It wasn’t due to extra activity and it wasn’t due to a stomach bug. We are still working on the levels, but at this point I’m wondering if I’m doing too many changes at once and this is going to cause him to spike.

Tomorrow he’s going to go back to daycare, and we’ll see if he makes it through the day with a reduced bolus ratio and a reduced basal.

Today I learned something new. Advice for parents – do not give your child a kleenex in the car and assume he’s blowing his nose. In Ayden’s case he’s having a pretend nose bleed and he’s shoving a wad of kleenex up his nose. Thank goodness for tweezers and a tired two-year old that was willing to sit and let me pull it out. Yuck – I’m sure I’ll laugh tomorrow, but tonight I’m just glad he’s in bed.

Common questions September 28, 2009

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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.

It’s been too long September 16, 2009

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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

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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.

Insulin pump resources and information

Worst experiances September 1, 2009

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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.

Day three – insulin pump August 27, 2009

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Wow, it has been an exciting few days. Ayden is officially wearing his insulin pump, and he seems to really be enjoying it.

However I’m noticing he seems to be tired these days, and I have a feeling he’s not sleeping well because it’s attached to him. I can’t put it under his pillow thhough because he moves around too much during the night. Anyone have any other suggestions?

The main quesiton I have been getting from people (even our pharmacist) is “what is an insulin pump?” So for anyone out there  who is confused, it is a device about the size of a pager that delivers insulin to him through an IV type of insertion. This allows Ayden to get a constant dose of insulin throughout the day to match his body’s minimal requirements. The overall purpose of it is to better control your numbers by taking him off of long acting insulin which can act irratically.

Because of the features of the pump it also allows us to be more flexible in when and what Ayden eats as you can deliver extra insulin to him to balance the food that he’s eating.

Because of the features of a pump and the way that it operates we are essenitally learning a new way of managing Ayden’s diabetes. And it is as intensive, if not more so, than when he was first diagnosed. We started the first of our official training on August 25. And I have to say, this session did not go very well. 

First off, the team at the Stollery has done a fantastic job creating this pumping program, and I feel very fortunate to be a part of it. But it has been my experiance since Ayden got diagnosed that many of the programs, services and best practices that are developed are geared towards older kids with diabetes. This means that parents of younger diabetics are given the same information and treated the same, even though they have different restrictions or needs.

The first day did not go well, because my husband and I were trying to learn about how to manage Ayden’s diabetes this new way while trying to entertain a very active two-and-a-hlaf year old in an auditorium. this meant neither of us learned a thing.

The second day we brough my parents to help us with Ayden, and they spent the first 10 minutes in the class and then the next three hours wondering around the hospital. This worked out as Ayden was entertained and they could check in on eany numbers and get advice on what needed to be done.

we have a the third session next week at night, and we are not bringing Ayden, we can make any needed adjsutments to his pump when we get home that night.

There was also a course last week about how to use and insert the pump. Ayden did not have to be at this one either and it meant Phil had to chase him around the whole time and I had to teach him as much as I could the next day.  

I have to encourage anyone who is raising a diabetic toddler to push for what you need as a parent that enables you to take part in these programs and services. After going through the first two sessions, I can tell you your child does not have to be with you at all times for the classes. 

I completly understand that there are restictions on room sizes and how many people can take part in a course, but flexibility for a parent of a toddler is imparitive. Even if the room size couldn’t accomodate extra people to whatch the toddlers, just know that they can be available outside of the room, as your child does not have to be with you the whole time.

I really enjoyed the opportunity to connect with other parents of diabetics, and I really appreciated the kids that came up to me after the class to give me advice from their perspective. It meant a lot to me to hear from them, and see it through their eyes.

What I have learned over the past year August 24, 2009

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One year ago today my life changed. I spent the next few days meeting several doctors and nurses and learning about diabetes.

Over the year I have learned a lot aside from how to count carbs, adjust insulin, and calm a baby who didn’t understand why I was hurting him. Below are my top nine learnings from the year. Please comment with your additions if you have any recommendations.

1. Don’t beat yourself up – we can’t be perfect and those of us raising toddlers can’t be mind readers (but we try really hard to be).  So if you make a mistake and something happens think about the positive, and learn from it.

2. Continue to learn from others – I monitor the latest news and information on type 1 diabetes. This has helped teach me about several things including the highs Ayden experiences when he’s active and how activity snacks can help to prevent the spikes.

3. Communicate with your partner – Keep talking. My husband and I have our breakdowns and we each have our own differing opinions, but we have made a commitment to each other to respect those opinions and continue to talk about the issue until we come to a solution for Ayden that we can both understand. This may take minutes or hours but we both realize that we have to trust each other and recognize we are both just wanting our son to be healthy and happy.

4. Do what’s right for your child – The best treatment practices are just that. they are the best based on the general population, but what is right for your child may not be recommended. Your health care team is essential in your child’s treatment process, but so are your instincts and your knowledge of your child. Try not to let best practices over rule what you think is right for your child. I have run into some problems with Ayden because I didn’t trust myself enough, but I do now. And I will fight for what is right for him.

5. Develop a support system – I’m very lucky to have my parent as part of our support system. They understand Ayden’s diabetes almost as well and I do, and they can step in to help if Ayden is sick or I need a second opinion on his treatment plan. All of our family and friends are encouraged to learn how to give Ayden finger pokes and needles. This helps him understand that his whole family supports him and will help him to live with diabetes.

6. Don’t hide it, don’t be embarrassed of it and don’t accept sympathy – One of the most common statements to me when people find out is “Oh, I’m sorry.” My response to is – don’t be. He’s fine, we’re fine, and it doesn’t slow him down. Overall people are curious when we pull our needles and lancets out at a restaurant, but I’m not ashamed of it and I want people to ask me about it. I want to show Ayden that he can feel secure in knowing that this is not something he has to hide in a bathroom. People may think I’m flaunting it, but it’s only to give my son confidence and raise awareness.

7. Give your child some control – during pokes, needles or insertions Ayden is never held down, and it is never forced on him. To this end he has accepted it. He still has times where he will whine about it and it may take five or 10 minutes to convince him, but in the end he accepts it and helps us with it however he can. For instance he will push the plunger of the needle down. that gives him a part in his treatment and some control over the needles. He will also do his own finger poke if he feels like it.

8. Try not to let your fears scare others – When Ayden was first diagnosed has was in a fantastic daycare. Although we were terrified, we tried to convey a sense of security with them. In the long run this has benefited us the most, as our daycare is on board with anything we need. They will do multiple finger pokes a day to check on him and will call us immediately if anything is looking bad. They don’t do insulin, but they track his numbers and his food intake as needed. I think this is because they weren’t scared off at the beginning. I have to say the ladies are absolutely fantastic and love Ayden to pieces.

9. Live in the present – Thinking about the future – the what ifs and the what happens when – drives me crazy. I really try to keep myself from focusing to much on the future and more on what I can do right now to improve his tomorrow.