Progress of a sorts.

My son's diabetes team met with us today. Our nurse, dietitian, newly introduced social worker and social work student gathered to discuss Owen's progress - weight gain, blood sugar levels, eating habits, concerns, home life, etc. It was lovely to speak with people who understand what we are going through.

The interesting breakthrough that we had was to have several professionals calmly inform us that they interact with 61 T1D families that have not had to use Glucagon since their children were diagnosed. In fact, some of them don't even know where it is in their house! I also discovered that my decision this week to leave the Glucagon at home when walking with Owen, was a good one. As long as I have a 15g carb snack, I will feel secure knowing that if he seems to be having low blood sugar, I can react appropriately until we get home.

At school, hopefully as early as Friday, I will be there initially to monitor his blood sugar levels and perhaps our afterschool teachers will be permitted by the board of directors to administer Glucagon in an emergency as they are not bound by the same policy constrictions that the public school teachers are. We will see when the board meets to discuss the issue in a week. We will feel better knowing that Owen would receive Glucagon in the unlikely event that it should be required. Peace of mind. I dare hope that we will feel that someday.

Meanwhile, the Public School Board, Ministry of Education and our local M.P.P., Liz Sandals are discussing a change in the Glucagon policy - now we just need to get all of the school boards in Canada to update and bring the T1D families out of the dark corners with their secret league of Glucagon-toting Resistance fighters.

My son's teachers have been advised not to administer Glucagon: he doesn't have a school to go to now.

I am not sure what to say today. I am gutted. I feel so terrible for Owen because he can't go back to school without anybody willing to administer Glucagon in an emergency.

I have re-read my correspondence and mulled over my telephone conversations and in-person encounters with other mums of kids with T1D from the past week. In each case that I heard about there was a willing staff member at their child's school who offered to deliver the Glucagon if the child was unconscious. This was unofficial by necessity due to Board policy - it is just the right thing to do. I admire those who volunteer to give Glucagon because they have the situation in perspective - they know that if this is ever required of them that it is straightforward and could mean saving a child's life. They also know that to politicize the administering of a life-saving injection is wrong.

I admit that I feel confused and upset by administrators who have said that they have advised staff not to administer Glucagon. By becoming involved in my child's emergency protocol, the administrator has effectively cut off my son's access to his school. Why was this done? Would anybody in their right mind stand and watch a child lapse into a diabetic coma while they wait for the 911 response? Our doctor wrote on our emergency directions form that if Owen is unresponsive, to administer Glucagon and call 911. Owen is 7 years old and the staff have been advised not to administer Glucagon. It blows my mind.

To Glucagon or not to Glucagon, that is the question.

STUDENT DIABETES MANAGEMENT: ROLES AND RESPONSIBILITIES Area	Who		Role and Responsibilities		Special Considerations
School Registration (new students) and New Diagnosis	Principal Parent Student (if appropriate)		Together determine whether or not the student is able to safely manage his/her diabetes Parents complete Life Threatening Management and Prevention Plan and obtain qualified medical practitioners direction		See: Life Threatening Management and Prevention Plan
Communication		Principal School Staff Parents		Establish clear communication methods between school and home Follow established procedures for alerting staff of student medical needs
Referral	Principal CCAC		Principal contacts CCAC for referral regarding necessary medical intervention (e.g. injections)		Nursing support is required for students requiring injections to be given at school

Well, it seems that we are in the liminal, nebulous ether of school board policy versus real life at the moment. Owen's principal kindly organized the teachers and after school teachers to attend a training "lunch and learn" session with our diabetes team nurse while parents generously volunteered to supervise students over the lunch period.

We were all geared up to return to school after the P.A. Day today, with just a few bits and bobs to go into Owen's T1D boxes at school, a little more one-on-one training with his teachers, but we were almost there! Now we are betwixt and between. It seems that the Upper Grand School Board is mandating that T1D students must have a nurse to administer injections at the school. Glucagon is a hormone manufactured by the liver that stimulates the release of glucose into the blood stream. The injection is just under the skin anywhere there is a bit of fat and it is given when the child is unconscious with low blood sugar - a life threatening situation. The child may experience seizures and the Glucagon is a necessary step while waiting for a 911 response. Did I mention that it is a life threatening situation? Similar to the use of an epipen for anaphalaxis. Insulin is given by a parent or regional nurse or the child when they are ready. Perhaps that is all that is meant by the above edict - if so, that should be clarified in the policy document. So we wait.

Our team nurse got back to me an hour ago and the news is astonishing. I am reeling.

Hi Beth,

Thanks you so much for sending me the school protocol. The Catholic School Board just this year has included glucagon in their protocol. I did meet with their Health and Safety person on their Board and also sent a letter in support of students with Type 1 diabetes receiving Glucagon in an emergency situation. The process took about 2.5 years to finalize.
I am hoping that now that the Catholic Board has it in their protocol, it will be easier for the Upper Grand Board to follow suite. Unfortunately, I am one person in our clinic and my time limits are very stretched between patient care and administrative care. I am hoping to address this with Upper Grand Board member in the near future. So I will keep you posted.

This email speaks to how stretched our healthcare system is and how the school boards act independently of each other even in matters of emergency protocol despite the obvious necessity to facilitate school attendance for all children whether they attend separate or public schools.

I continue to reel. Why is this the first that we have heard of this issue? This is HUGE. This is - someone (me) must forfeit their career to homeschool their child while the child just wants to attend school--his school with his friends, his teachers and be a normal kid. That's what we are trying to teach him--life resumes with some adjustments after a diagnosis with T1D, but you are the same as before your diagnosis. Clearly this is not the case if we explain that not only does he need to maintain blood sugar levels or risk organ damage, seizures, coma and death, but he must also uproot his entire life and either be home schooled or switch to a Catholic elementary school. What is the difference between administering an epipen for anaphalaxis and glucagon for low blood sugar? The Catholic School Board sees no difference, now the Public School Board needs to see the light.

Newly diagnosed and hitting the ground at a run!

In December 2012, my seven year old son Owen became very thirsty and hungry - we wondered if he was having a growth spurt and we also wondered if he was thinking so much about food and drink due to his current favourite computer game, Minecraft. He had a few viral illnesses that threw us off the scent for a while, but before we knew it, he was gaunt from weight loss and when we asked a doctor from our after hours clinic on Thursday, December 6th to investigate diabetes, Owen did the fasting blood test on the Friday morning.

On Sunday, December 9th Owen appeared lethargic, upset and very much unlike himself. We rushed him to the emergency department at Guelph General Hospital where he began to suffer leg cramps from low levels of potassium and cried from the pain. His blood glucose level a that time was 26, well above his target range of 4-10. It was determined that Owen was experiencing ketoacidosis and was very, very ill.

Owen was admitted to a bed in the emergency ward where the doctors and nurses hooked him up to an I.V. of saline, glucose, insulin and a very high dose of potassium. Owen was in critical condition and was closely monitored throughout his time there. Fast forward 24 difficult hours and we moved up to the paediatric ward for a week to adapt Owen to the insulin and to teach us all about type 1 diabetes (T1D).

It has been just over a month since Owen's diagnosis. Within that period, we have ridden the highs and lows of the newly diagnosed. Owen has adapted as he must, but has his dark moments too. It is much more likely to hear laughter in our home now than a few weeks ago. We have shifted our family's food culture to include carb counting and adhering to a stricter schedule for snacks and meals. I am a creative cook and prefer to eyeball measurements (except for baking) and this measuring business is cramping my style! Seriously, once I used measuring cups and spoons for a while I am back to eyeballing portions in Owen's favourite dishes and cups. The adaptive process is swift and merciful - that feeling of strangeness is all but gone now.

Last night was difficult. Owen told us that he was seeing double and his vision was blurry. His blood sugar level was around 13 mmol/L and I felt helpless to intercede in his fight with T1D. I have begun increasing his vitamin D supplements and based on research with children with T1D, 2000 IU's of vitamin D may slow down the ravaging of his pancreas' ß cells. More on that later.

I have been taking copious notes since entering the hospital and will share some of them here. I would like to include my research and recipes as we proceed on this journey that is juvenile diabetes. Owen is talking about his feelings and he winces when the needles hurt, but he bears it so well, we remind him that it's okay to cry or be upset and he takes it in his stride. Owen is a superhero and like Ironman needs his arc reactor, Owen needs his insulin to save the world. All in a day's work.

The devil is in the details!

We have sought out carbohydrate guides in the literature that our diabetes dietitian gave us, on food packaging and googled when in doubt; measured and tweaked to come out at the magic number for each meal and snack. It is getting easier to Rubik's Cube a solid meal together with the right balance of carbs and veg and protein that our little guy may actually eat.

We arrived home from the hospital at lunchtime on December 14th and had a very narrow window to throw together a meal on time to match his insulin injection. Owen ate a cheddar cheese and lettuce sandwich on my homemade whole wheat bread with raw green beans, red pepper and cucumber slices on the side and 125 ml of cow's milk for a total of around 40 grams of carbohydrates.

One month later, we are transitioning from gluten and dairy products to gluten free and soy or rice based foods. While Owen was adjusting to the insulin in the hospital and for the first week or two at home, he was still feeling an insatiable hunger and gobbled up any veg he could sink his Wererabbitty teeth into! (We love Wallace and Gromit.) Now - not so much. Now, we worry about fitting in all the carbs and nutrition he needs before he loses interest in his meal.

That afternoon, Owen had vegetables to get him through to snacktime and then had a cherry yogourt worth 14 grams of carbs for snack. His first dinner home was homemade tortilla pizza.

1/4 cup tomato sauce: 4 g
ham, cheese, onion, garlic and live oil toppings: 5 g
salad with ranch dressing: 5 g
whole wheat tortilla: 3 g
melon: 8 g
125 ml milk: 6

I seem to remember that he also had a small Christmas treat, e.g. Kinder advent calendar chocolate, but I did not record it in my notes. That may explain the high blood sugar reading he had at bedtime.