Question for Type 1 Parents

The NHBPM prompt for Day 19 asks us to pose questions to other patients. 

We have been riding a carousel with Dylan's diabetes care for quite a while now and I desperately want to get off the ride. Around and around and around we go, repeating the same problems over and over. Now I am asking for help/advice/tips from the DOC.

For as long as I can remember Dylan has been pushing for independence with his diabetes care. He has always shown a high level of interest in doing his own testing, entering carb counts for meals, and calculating his own correction boluses. I oversee everything, and do all of his site changes and setting adjustments, but for the most part, he handles the day to day stuff on his own. This system has worked for us. Until recently.

Just over a year ago, Dylan started forgetting to test from time to time. He'd come home from school and we'd realize he'd neglected to test for his morning snack, but gone ahead and eaten it anyway, resulting in a slightly elevated bg at lunch. I'd catch the oversights early, and the problem would go away. Then a few weeks later it would happen again, and again, and again. 

Then last November we adjusted the custody agreement between Dylan's dad and I, implementing a week on-week off schedule. Great for the kids, not great for diabetes monitoring. The forgetfulness with testing became more and more frequent, and without me hovering and reminding Dylan constantly to test, missed bg tests at school became the norm rather than the exception. Upon uploading the pump data, I would immediately see the problem, talk to Dylan about it, and it he would be more diligent at school, at least temporarily.

The cycle has continued on and off since and we don't seem to be getting anywhere closer to a permanent solution. His testing habits at home are great, but school is an ongoing problem. He doesn't have any support worker or aide anymore, and I can't be there to remind him. He has always been very good at recognizing highs and lows, too, so when he feels good, he is more likely to forget to test.

So my question is...

How do other parents ensure that their tween/teen tests at school? What system/precautions do you have in place?

In the Blink of An Eye

And just like that, they're all grown up. It seems like only yesterday that my eldest was an infant and I was cherishing being a new mom. And yet my babies are babies no more. With a 15, 11, and 8 year old, now I race to slow down the clock and enjoy every single little moment.

This week has been tough on me. Dylan has been away at "Outdoor School" with his class for 4 days now. That's 4 full days and 3 nights of him monitoring his diabetes entirely on his own. He's testing, SWAG'ing, bolusing, carb counting, treating his own lows, and even setting up his own temp basals. My little guy is growing up, and is taking ownership of his disease in a way he has never done before. And he's doing it well!

Today I drove up to the site to change his infusion set. Technically, he can do it himself, and has before, but he really doesn't like inserting the new needle by himself. I can't say I blame him, those things are HUGE. I arrived at ten to 1:00pm, quickly found him in the auditorium, and we headed over to the first aid cabin where all of his D-supplies are being kept. The entire time we were in there (all of 6 minutes) he was looking at the clock, antsy to get it done so that he could get back to his buddies in time for the next field study at 1:00pm. That's my guy - never letting D get in the way.

So how he has done this week? Monday's numbers can be found here. As for Tuesday, Wednesday, and today, check these out...

Tuesday, Jan 24th
8:30 am: 7.1 mmol/l (127.8 mg/dl)
12:13 pm: 5.2 mmol/l (93.6 mg/dl)
3:10 pm: 7.4 mmol/l (133.2 mg/dl)
5:49 pm: 3.6 mmol/l (64.8 mg/dl
9:20 pm: 4.6 mmol/l (82.8 mg/dl)
9:58 pm: 4.7 mmol/l (84.6 mg/dl)

Wednesday, Jan 25th
8:29 am: 10.1 mmol/l (181.8 mg/dl)
12:09 pm: 5.3 mmol/ (95.4 mg/dl)
3:06 pm: 5.1 mmol/l (91.8 mg/dl)
5:51 pm: 6.2 mmol/l (111.6 mg/dl)
9:05 pm: 4.8 mmol/l (86.4 mg/dl)
9:55 pm: 4.1 mmol/l (73.8 mg/dl)

Thursday, Jan 26th
8:20 pm: 10.4 mmol/l (187.2 mg/dl)
12:09 pm: 9.2 mmol/l (165.6 mg/dl)
3:10 pm: he forgot to test and input to pump, but did have a snack
5:52 pm: 12.6 mmol/l (226.8 mg/dl, not surprising after no afternoon test)
9:02 pm: 5.1 mmol/l (91.8 mg/dl)
10:00 pm: unknown

Pretty darn good if you ask me. I am so proud of Dylan!

Independence - 24 hour update

Well, the first 24 hours of Dylan's trip to Outdoor School have been relatively uneventful. They arrived at the 200 acre site around 10:30am yesterday morning, and quickly met their counsellors and claimed their bunks, before jumping head first into a full afternoon of activities. As mentioned in yesterday's post, One Small Step for Dylan, One Giant Leap for Mom, Outdoor School is a high activity week involving a lot of exercise and outdoor learning. Exciting, but rough on the blood sugar.

A lunch time test indicated a 4.2 mmol/l (75.6mg/dl) blood glucose level. At afternoon snack he was 4.1 mmol/l (73.8 mg/dl) and at dinner he was down to 3.3 mmol/l (59.4 mg/dl). All 3 numbers are too low for my liking, so I was very worried when I spoke to Dylan at 7:15pm last night.

Dylan has had nighttime hypoglycemic seizures in the past. He hasn't had one in a few years now, but all of the ones in the past were after days in which his sugar levels ran low for at least a few hours of the day. I didn't want to risk him having a seizure (or worse, an undetected low) in a cabin with his friends, not to mention without me there to treat it, so together we decided we would err on the side of caution and program a temp basal overnight. 12 hours at 75% was the final decision, in part because that's what he did at diabetes camp the past 3 years. We also agreed that if his bedtime snack reading was under 5.0 mmol/l (90 mg/dl) he would call me again. As a final precaution, I told him to test one last time right before going to bed and if the reading was under 8.0 mmol/l (144mg/dl), he was to have a juice box.

Though my experience with diabetes was telling me these precautions should be enough, I was still frantic most of the night and barely slept. I finally dozen off around 1:30am, with both the house phone and my cell phone right beside me. I woke up frequently through the night, but never due to a ringing telephone. At 7:30am when my alarm went off, I was happy to discover that there had been no calls, and therefore no problems.

Only 3 more nights to go...

One Small Step for Dylan, One Giant Leap for Mom

This week marks perhaps the single biggest step towards independence that we have taken since Dylan was diagnosed with diabetes over 6 years ago. And while it's not a huge deal for him, it is a colossal step for me, as I am trusting him explicitly to monitor his own diabetes care for 5 full days!

We are very fortunate to live in and attend a school district that owns a 200 acre outdoor learning facility, known as "Outdoor School." All students in the district visit Outdoor School twice in their elementary years: for 3 days/2 nights in grade 3 and for 5 days/4 nights in grade 6. Classroom teachers accompany the students, and are assisted by high school students who volunteer as camp counsellors.

The experience itself is incredible. Students sleep in cabins and eat all meals in a common room, and then go out on "field studies" twice each day; once in the morning and once in the afternoon. Field study topics include a working farm, a pond study, salmon hatchery, and forest study, among others, and students also play cooperative games, sing campfire songs, and perform skits. It is an experience that stays with them for years, not only because it is such an amazing learning opportunity, but because of the bonds it strengthens between friends and the memories it creates.

For most parents it is an opportunity for children to grow and gain some independence. But for the parent of a child with type 1 diabetes, it is much more complicated than that. It means 5 days and 4 nights of Dylan being responsible for his own testing and bolusing. The first aid attendant will remind him to test at every meal and snack, and help him with carb counting, but otherwise he's pretty much on his own. Outdoor School involves a LOT of activity and excitement, so the pockets of his coat are loaded with a tester, a juice box, a 50 bottle of dex tabs, and a granola bar. He then has another 1/2 dozen juice boxes and granola bars in his suitcase to refill his pockets as needed, and treat nighttime lows and the first aid attendant had a big bag of extra supplies.

Dylan has been pumping for over 4 years now and is very confident and capable with bolusing. He's also become quite good at recognizing lows as they first start, and treating them accordingly. He has his 2 closest friends with him all the time for extra help, too, as they know what his low symptoms are and can tell the nearest adult if necessary. There is a first aid attendant there during the day and evening and another one on call at night. They are trained in administering glucagon and have my cell number handy should they need to speak with me. Finally, there is a clinic 10 minutes from the site and a hospital 20 minutes away.

Each night after his evening snack, Dylan will call me and read me all the day's data from his pump. Then depending on the numbers we will adjust basals for night time. If the day's blood sugar numbers are good, we will leave his overnight basals as usual; if he has been running low through the day, we will do a temp basal overnight. Then on Wednesday I will drive up to the site (about 90 minutes from my house) and change his infusion set.

All in all, this is a big step for us. Not only does it allow Dylan to demonstrate his maturity and independence, but it forces me to step back and let go of the reigns a little bit.

Whether I make it through the week without going crazy with worry is another story...

Insulin at School: Whose Responsibility Is It? Part 3

This is the third and final installment in my "Insulin at School" series of posts. In Part 1 I outlined the issue itself (whether schools should be responsible/trained for administering insulin to children with type 1 diabetes); in Part 2 I provided some background information into what has worked for my family, and in Part 3 I will address what I think needs to happen now.

First and foremost, in Part 2 I talked a bit about the care plan I have set up with Dylan's school. His care plan is a collaboration between me, the community health nurse, and the school, and was written when he was first diagnosed in 2005. Each September we tweak the plan a bit to reflect and recent changes, as well as goals for his blood sugar levels. This care plan is still in place now, and will stay with him until he graduates from high school. It ensures that there are always people in the school (his teacher, as well as SEAs and administration) who know how to help him if and when needed. It covers a variety of situations, and is specific to Dylan's needs, but not include the administering of glucagon or insulin. Every type 1 child needs to have a care plan in place to ensure their safety. If you don't have one, get one. And if your school is uncooperative for any reason, talk to the principal, the superintendent, the ministry, whoever you need to. In BC, an alternative to a "medical care plan" is an Individual Education Plan (or IEP), but for this you need to have your children designated as having a special need. This is a designation that stays with them through graduation and is reflected on their transcripts and university applications, etc, so it's not for everyone. For the record, we have both. Dylan is designated by the Ministry of Education as "gifted" so he requires as IEP to reflect additional learning goals. We can include diabetes goals in his IEP as well.

However, the issue at hand is not care plans. The issue is whether schools should be administering insulin to our children, either via syringe or insulin pump. I think the answer is obvious. Why wouldn't they? The only question then becomes, who does it? And while I said yesterday that I don't believe the onus should fall entirely on the teacher, the classroom teacher is the one person that sees your child more than anyone else, and for that reason, they should be trained on how to administer insulin, or, at the very least, on how to give a glucagon shot. Then there should be at least one alternate person as well, such as an SEA. Why? Your child travels throughout the school every day; their primary location is the classroom, but then there's outside time, library, gym, music, and computers, for which they may have alternate teachers. And what about field trips? The classroom teacher might be the only adult present on a field trip, so their understanding of how to use glucagon is critical. 

I mentioned in yesterday's post that Dylan does all of his own boluses, and I have no intention of changing that. I have always encouraged him to be as independent as possible with his diabetes care, in part because the idea of relying on others frightens me, and because as he gets older, he will have to care for himself more and more. But he's 11, he's had type 1 for over 6 years, and has worn a pump for over 4 years. Translation: he's not new to this. Neither am I, and neither is his school. In fact, when he was diagnosed, he was 1 of 4 children in his school of 230 kids who had type 1. He's now the only one, as the others have moved on to high school. What that means, though, is that almost every teacher in his school has had a type 1 child in their classroom at some point in the past few years, so the entire school community is familiar with the unique needs of a child with diabetes. We are very fortunate in that way.

For kids who are recently diagnosed, or who are on MDIs, or are young, or whose parents work far from the school, or can't leave work, or who, for any number of other reasons, are dependent on the school to inject their child with insulin, the school community needs to step up and ensure their child's safety. And glucagon injections, well that's a given. Someone has to be able to do it at the school.

So where do we go from here? I believe we need to ensure that members of every school are trained to administer glucagon to a child with type 1 diabetes, including the classroom teacher. As for insulin injections, they should be willing to learn, and from there the procedure needs to be decided between the parents and the school, as each child's needs are so individual.

Insulin at School: Whose Responsibility Is It? Part 2

First of all, I want to send a big thank you out to all of the people who posted comments or sent emails in response to yesterday's Part 1 post. I had some great feedback!

I mentioned in yesterday's post that the more I thought about whose responsibility it should be to administer a child's insulin at school, the more conflicted I became, and I'm not sure that I'm any less conflicted today. And the more I perused the idea yesterday, the more I realized I cannot speak for other parents, nor can I suggest what the best "solution" is. What I can do is speak from my experience, in terms of what has worked for us, and what hasn't.

As parents we all want the same basic things for our child at school: for him or her to be safe and to have an enjoyable, successful learning experience. And while every classroom is comprised of children with diverse learning needs and unique circumstances, type 1 adds a bit of a special challenge to the mix because it is not only life threatening, but is treated differently in every child. It is not like a severe allergy, for example, where the treatment is straightforward with a quick shot from an Epi pen. Too much insulin is deadly.

I strongly believe that the onus of responsibility in administering insulin to a type 1 child at school should not fall entirely on the teacher's shoulders. School administration is not a realistic option either because ideally it should be someone who is in the classroom with the child, at least most of the time, so that they can recognize symptoms of high and low blood sugar, which can vary from child to child. But the problem then becomes, if not the teacher, and not the administration, then who?

In BC we have specially trained personnel in the school called Special Education Assistants, or SEAs, whose job it is to work with children with unique learning challenges that prevent them from functioning normally in the classroom. The overwhelming majority of these unique circumstances are either physical or mental disabilities, such as autism, severe behavioral problems, cerebral palsy, down syndrome, and learning disabilities, for example and, depending on the need, require the help of an SEA on either a full or part time basis. For many children, they would simply be unable to integrate into the classroom community without the help of an SEA, and as a teacher, my gratitude for this additional help is limitless. But SEAs are in high demand and there is not enough money to employ as many of them as are needed. Therefore they are assigned to children with the greatest need. In a perfect world, there would be enough money for to ensure that every child had the ideal leaning support, but that is not the reality.

Does my child have a critical need for an SEA? I don't think so, and hence why he does not have one. As a teacher, I have seen the myriad of needs in a typical classroom, and I am too familiar with how many children need an SEA much more than my son does. I cannot justify taking an SEA away from a child who desperately needs the help, in order to help monitor Dylan's blood sugar and administer his insulin.

So how have I addressed Dylan's insulin needs at school? Dylan was diagnosed when he was in kindergarten, in November of 2005, so he was only 3 months in to the school year. He went to a half day kindergarten in a public school, and was taking insulin via syringe at that point. I would give him his morning shot at home, before school, and he required no additional insulin at school. At snack time, an SEA would pop into the classroom and supervise while he tested his blood sugar, and they would record the number in a file. If the reading was low, Dylan would drink a juice box and retest 15 minutes later, again with the supervision of the SEA. If he was high, the SEA would call me and we would reduce his morning snack and have him drink a cup of water. For the odd times he was particularly high, the SEA would make him go outside and run a few laps around the school. It always worked.

In grade 1 we started him on an insulin pump and when I went to the pump training, I made sure that Dylan was trained too, so that he could administer his own boluses. The same procedure continued at school, except that the SEA would pop in at both recess and lunch to watch Dylan test. I would always put a little post it note in his lunch listing the carb counts for his recess snacks and his lunch, and he used the built in bolus wizard in his pump to figure out the bolus. That meant all he had to do was test, input the blood sugar number into the pump, input the carbs, and hit "Act". When he was in grade 1 and 2, the SEA would watch this whole process, just to ensure that he input the correct numbers. We kept the same procedure for lows (juice and retest after 15 mins) and we stopped worrying about highs at school because the bolus wizard in the pump automatically factored in his carb ratio and insulin sensitivity factor to give him the right amount of insulin for his food and to reduce the high. As Dylan got older, and more mature and responsible with his diabetes care, the calls home became less and less frequent. By the end of grade three he was starting to get annoyed because he was always having to wait for the SEA to arrive at his classroom (she was assigned full-time to another child and only saw Dylan for bg testing), and he didn't like missing 10 minutes of his 20 minute recess waiting, so he started going ahead without her. By the end of third grade, he asked me if we could drop the SEA altogether and arrange it so that he could seek her out if and when he needed her, but otherwise do his testing and pumping on his own. That is the way it has been ever since, and he's now in grade 6.

His teacher and the office staff have all been trained to recognize signs of high and low blood sugar in Dylan and they all know that he needs juice when he's low and to give it to him if he's unable to get it himself. He has a glucagon shot at school, though no one in the school is allowed to use it. We keep it there so that, in the event of an emergency, the school can call 911 and me, and whoever arrives first can administer it (I only live a few blocks from the school). To date, we have never used it at school.

All of the above being said, we have learned over the years that the best "assistant caregivers" for Dylan are his friends. They are the ones who have been with him for over 6 years and they know what his symptoms of high or low blood sugar are. They know where his juice and dex are kept, and they know to make him take them. On numerous occasions, he has avoided severe low blood sugars because his friends have noticed a change in his behavior/appearance before he even felt low.

Would I want his care plan any different? I don't think so. The only people allowed to touch Dylan's pump are him, me, his endo, and the CDE that did his pump training. I don't trust anyone else touching it, not even family members, so I definitely wouldn't want someone at school touching it. I understand that what works for us may not work for everyone, but that is the problem with a government mandated care plan for children with type 1 diabetes. It varies so much by child that there is NEVER going to be a plan that works for everyone.

Finally, I've realized at the end of this ridiculously long post, that my thoughts on this issue are still not complete and I think the issue warrants a Part 3 tomorrow!

Insulin at School: Whose Responsibility Is It? Part 1

My original idea with this post was to present the issue and then provide my own opinion about it. However, the more I examined my own thoughts about it, both as a parent and as a teacher, the more conflicted I became, and the longer this post got. So, I've decided to break it into two parts: issue today and opinion tomorrow. That being said, I would really welcome the opinions of others, particularly those outside of BC, who could shed some light on how insulin is administered in schools where you live.

According to an advocacy group in British Columbia, school staff should be trained to administer insulin, and life-saving glucagon injections, to diabetic students. The group, entitled "Unsafe at School: Advocating for Children with Type 1 Diabetes" is made up of BC parents and a number of physicians. It was formed after a North Vancouver father filed a complaint with the BC Human Rights Tribunal earlier this year. They have started a petition calling on government for change and almost 400 people have signed it thus far.

Currently there is no mandated care plan for children with Type 1 Diabetes in BC. School staff are not responsible for checking blood glucose levels, injecting insulin, managing pump boluses, or administering glucagon in an emergency. Each child, and each school is unique, so the level of support varies considerably but essentially the onus of responsibility falls on the parents, who, in some cases, have to visit their child's school at least once per day to administer insulin via pump or syringe.

The advocacy group believes that until this changes, diabetic children are not being adequately cared for at school and are being discriminated against because of their diabetes. They add that when a child with diabetes experiences high or low blood sugar their learning is compromised, and therefore should be treated similarly to a learning disabled child in the classroom. The Education Ministry is currently reviewing the situation.

To find out more about the advocacy group, or to join their efforts and sign the petition, visit their "Advocating for T1 Kids" page on Facebook. And to read the Vancouver Sun article that ran December 9th, click here.

Diabetes at School - Does it Get Any Weirder Than This?

First full day back at school today and I have mixed feelings, as it set to be an unusual start this year. Public school teachers in the province of British Columbia are currently in Phase 1 of a strike (the reasons for which are beyond the purpose of my blog). What is a Phase 1 Job Action you may ask? A bit confusing to explain, but basically teachers are not currently performing administrative duties; they are focussing solely on classroom teaching.

Now for most kids, this is no big deal, as it will likely not affect them at all. Even most parents will be unaffected by this change, unless it continues for a while, in which case report cards and parent-teacher meetings could be affected. But we will cross that bridge when and if it comes.

For a child with diabetes, the implications are a little bit more severe. At the beginning of each year, the classroom teacher, a member of the administration, and myself sit down and make sure that we have the best "medical care plan" in place for Dylan (in the US, this would be known as the "504 plan"). The medical care plan is a very effective 3-way partnership between teacher, parent, and administration. So how can that relationship be successful when teachers and administration are not communicating? Dylan is in grade 6, so he does provide the majority of his own care, but we rely on his teacher to keep an eye on him and watch for signs of high or low blood sugars, and the administration to oversee his care, ensure that he tests regularly, record the tests results, and notify me if and when there is a problem. Does this mean the Dylan has to step up and liaise between the 2 groups? Perhaps, but he is a child after all, not to mention the fact that his focus should be on his school work.

The logical conclusion would be that the onus falls on me to step up, as the "parent." As his mom I can speak with both parties and attempt to keep his diabetes care as thorough and stable as possible during this unusual time. Ok, but now let me throw in one more obstacle: I am public school teacher and a member of the same union as the teachers in his school. I am essentially part of the same job action. Where is the line between parent and teacher for me, and at what point am I "crossing the picket line" so to speak (teachers are not physically picketing, but the invisible line is still there)? I find myself in a bit of a conundrum as I am forced to address my personal beliefs about teaching and labor unions, while ensuring that my diabetic son continues to get the best care possible.

Let's hope, for everyone involved, that this labour dispute is resolved quickly and in the best interest of all parties involved. Until then, what?