My son is finally back to school after missing much of last year. After hiring a tutor to prepare him for grade three, we were poorer, but pretty jazzed about getting him into a busy life again. Sadly, two weeks into the school year he has been forced to change classes, and teachers along with the rest of the school in a ridiculously ill-timed shift. We have battled anxiety, sugar highs and lows, ketones in urine and all night vigils testing blood, urine and administering 10% of total daily insulin dose just to try to work out a safe space for him at his school so that we could have two incomes - in part to afford his diabetic supplies and our daughter's medication - we maxed-out our privately paid for health insurance long ago for the year. I haven't a bloody clue how we will be able to pay $8000 for an insulin pump next year to ease our son's life.
What I am finding is scary. We planned and planned for this fall, but so much is being undone and hurting us in every way possible. We have had as many meetings, notes, emails, phone calls as we could to ensure a smooth and safe entry to grade three for our son. We finally arranged for a nurse (we found out at first that three nurses handle his daily lunch doses - then found out today that it is actually five). So much more room for errors in my mind if so many people are handling one case. There isn't even a contact number for each nurse - we were only given one nurse's extension number to call.
The lunch insulin for my son is delivered by 5 nurses through an agency hired by the Upper Grand Board of Education, I believe. I left a voicemail, as I have had to do before, for one of the nurses to communicate to the others yesterday about a change in my son's insulin units due to chronic blood sugar highs at school. I also wrote a prominent note in the designated communication notebook for the nurse attending yesterday.
What ensued was mind boggling. I was called at work by a nurse who had not received either message and actually questioned whether or not I had paperwork from my son's diabetes doctor to verify the insulin change. I was patient on the phone - partly so that she didn't turn Nurse Cratchet on my son and party because I was at work where all could hear my end of the conversation - but I really must wonder how I am supposed to react with calm when, repeatedly, I am faced with people who are just doing a job - not really engaged.
Should the nurse whose voicemail specifies that Tuesday is one of her days of work be blamed for not passing on the message when asked to do so? Should the attending nurse who should have read the pre-established vehicle for communication, i.e. the notebook, be held culpable? Today's nurse had to be prodded to give my son the extra two units of insulin after I told her to read the note and she questioned my authority. I mean C'MON!!!!
I am furious, worried, worn out and cannot help but think that a school that was instrumental in colluding with the Upper Grand District School Board Council and working against T1D students in Guelph gaining the same life-saving (Glucagon) privileges as children who require Epi-Pens at school - is no place for my son. Even the nurse who is on our team at the hospital is stretched too thinly to train my son's teacher who is new to my son's school. I feel as though all of the supports that we have hobbled together to help my children stay alive and healthy are so tenuous and thready that I wonder if it is a mistake to entrust their care to virtual strangers who, in some cases, may just be killing time until the end of the day or are so stretched in terms of resources they are limited or burnt out at their jobs. In the end it is about trust. Ultimately, I trusted that people in professions where children's lives were at stake would be motivated to ensure that all the details were sorted - following-up established communication routines. Over and over I hear about how a form that we filled out in good faith did not go to its destination until too late or someone is away at a conference - this adds up and forms a pattern that gives an impression that in reality many of these professionals are actually not doing their jobs very well and that they have their "careers" rather than their "calling" to nurture. Emails that were to be forwarded to the caregivers closest to my son were not forwarded...
Kudos to all that have gone the extra mile, I hope that I have shown my heartfelt appreciation. To the others - all I can say is that I am so very tired, worried and disappointed.
Wednesday, 2 October 2013
Wednesday, 17 April 2013
Kathleen Wynne, Premier of Ontario Replies to My Email Regarding the Glucagon Law
I received a response from Kathleen Wynne today after I had previously emailed her an outline of the Glucagon Policy issue here in Guelph and elsewhere in Ontario and across Canada. In the meantime, the Board of Trustees for the Upper Grand School Board notified me last week of their decision to maintain the status quo and not update the Glucagon Policy despite the progressive, inclusive and very accomodating Glucagon Policy changes adopted by the Wellington Catholic School Board. I was under the impression that I would be given an opportunity to "delegate" (speak for 10 minutes to elucidate the issue and advocate in my own words) to the Board of Trustees regarding the safe use of Glucagon by teachers and other staff in the schools. I was not, however, afforded this opportunity.
I have had support for a change in the policy from many sources, including emergency services and education professionals yet the board of trustees seem very confident that they have made a safe decision. A policy that excludes the administration of a life-saving injection is descriminatory and placing all type 1 diabetic students at risk: I have been reliably informed that it is not possible to guarantee the arrival of EMS personnel within a certain span of time as there are many factors that influence response times and firefighters do not carry Glucagon or have training in its administration. I was saddened by board trustee Mark Bailey's letter that outlined in an unfeeling manner how they would not be changing the policy - it did not seem like the sort of letter one should be sending the mother of an 8 year old type 1 diabetic trying to affect change for all T1D kids, not just her own.
"Thank you very much for your online message regarding the Upper Grand District School Board. I value the input I receive from the people of Ontario, and appreciate your bringing your concerns to my attention.
I note that you have also sent a copy of your correspondence to my colleague
the Honourable Liz Sandals, Minister of Education. I understand that the ministry will be responding to your concerns.
Once again, thank you for writing to share your views with me. Please accept my best wishes.
Kathleen Wynne
Premier of Ontario
c: The Honourable Liz Sandals"
I have had support for a change in the policy from many sources, including emergency services and education professionals yet the board of trustees seem very confident that they have made a safe decision. A policy that excludes the administration of a life-saving injection is descriminatory and placing all type 1 diabetic students at risk: I have been reliably informed that it is not possible to guarantee the arrival of EMS personnel within a certain span of time as there are many factors that influence response times and firefighters do not carry Glucagon or have training in its administration. I was saddened by board trustee Mark Bailey's letter that outlined in an unfeeling manner how they would not be changing the policy - it did not seem like the sort of letter one should be sending the mother of an 8 year old type 1 diabetic trying to affect change for all T1D kids, not just her own.
"Thank you very much for your online message regarding the Upper Grand District School Board. I value the input I receive from the people of Ontario, and appreciate your bringing your concerns to my attention.
I note that you have also sent a copy of your correspondence to my colleague
the Honourable Liz Sandals, Minister of Education. I understand that the ministry will be responding to your concerns.
Once again, thank you for writing to share your views with me. Please accept my best wishes.
Premier of Ontario
c: The Honourable Liz Sandals"
Wednesday, 10 April 2013
Sabrina's Law only came about through tragedy: T1D families would like to prevent a similar course for the Glucagon Law
Dear Beth,
Thank you for your email dated March 18th advocating for a policy change to allow administration of Glucagon to Type 1 Diabetic public school students. I have taken the time to share and discuss your request and rationale with fellow trustees and senior board administration.
As you are aware, there is a Life -Threatening Management Plan in place for your son and training has been done with staff to ensure they are aware of signs and symptoms prior to any possible emergency and how to best react. The Standards of Care, for students with Type 1 Diabetes in School, produced by the Canadian Diabetes Association recommends a multitude of preventative steps to take to ensure a student never experiences severe hypoglycemia. It does recommend that staff be trained in administering a syringe of Glucagon if the response time of EMS exceeds 20 minutes. We have been assured that the response time of EMS to Victory PS would be 8 minutes as it is situated so close to the hospital.
You are also correct that the after school program does need to follow our boards' policies / procedures and protocols as per their community use contract.
Currently, Waterloo Catholic and Waterloo Public have the same protocol we do, as indeed do most other boards. Wellington Catholic has amended their policy and it is apparently in practice in one school. This comes with a doctor's "order" and a waiver from the parents. The Client Services Manager at the Waterloo Wellington Community Care Access Centre has been contacted and agrees that our protocol is sound and the proper response would be to contact 911 in an emergency. As such, the board will not be taking any action to alter our policy at this time.
Although you may be disappointed in your request being denied I want to thank you for your advocacy work on behalf of your child, and wish to encourage you to continue this conversation with your local MP and MPP should you wish to pursue having such a procedure become a law.
Sincerely,
Mark Bailey
Mark Bailey
Chair, Upper Grand District School Board
Trustee for Wards 1 and 5, Guelph
2nd Vice President, Ontario Public School Boards' Association
Monday, 18 March 2013
Letter to Upper Grand District Board Trustees
As recommended by Brent McDonald, Superintendent of Education, I have made a formal request to the board trustees to update the Glucagon policy for all levels of public schools for our region. The letter repeats the information from other previous correspondence, but the salient points are that the update is necessary, other school boards have already done so and we are badly in need of a Glucagon Bill to be passed to unify the province and country. I am going to form a parent advocacy group to encourage governments to push such a bill through - it seems that this is the only way. People are extraordinarily supportive of this move and it is just a matter of dotting the i's and crossing the t's I believe.
Beth Mulkins
March 18th,
2013
Dear Upper
Grand District School Board Trustees,
I am contacting
you to request altering the protocol related to administering Glucagon to Type
1 Diabetic elementary, middle and secondary school students. I am also writing
this letter to elucidate the facts surrounding Type 1 Diabetes as the parent of
an 8 year old boy, Owen, recently diagnosed with T1D (age 7 at the time of
diagnosis). Owen was attending Victory Public School and after school care with
Victory Kids’ Club until he was admitted to the Emergency Department at Guelph
General Hospital in critical condition in December. He is ready to return to
his friends and teachers, but there is a problem. The injection of Glucagon, a
life-saving measure necessary for severe blood sugar lows, is not currently
permitted to be administered by the public school teachers and other staff in
Guelph.
Superintendant
of Education and former Victory Principal, Brent McDonald, has discussed the
Public School Board emergency protocol with a few of the authors of the policy and
perhaps we will soon be closer to allowing Glucagon to be administered to
students by teachers at the public schools in Guelph. The Wellington Catholic School
Board recently adopted this protocol and Catholic School students with T1D may
now receive Glucagon at the schools in a life threatening emergency. They have
set an important precedent that was 2.5 years in the making. The rest,
theoretically, should be easy for the other school boards to follow,
particularly with full-day kindergarten being implemented with T1D kindergarten
students relying on the care of teachers for full school days and 5 day weeks.
As a family we were thrilled that Victory's principal, teachers, after school teachers and parent volunteers rallied for Owen and learned about juvenile diabetes with our diabetes nurse over a lunch hour. Owen's teachers met with my spouse and I to discuss the finer details
of his care, i.e. Owen's daily meal, snack, insulin and exercise schedule. We discussed Owen's requirements for low or high blood sugar levels, whether he would eat 15 g of carbohydrates for high blood sugar or sit out an athletic event in favour of a quieter activity when his blood sugar is a little high.
Similarly, we reviewed the emergency protocol in the event that Owen required emergency procedures for life threatening symptoms of low blood sugar when consuming carbohydrates in the form of orange juice or Dex4 tabs by mouth is impossible. The treatment for unresponsiveness in a child with T1D is an injection of Glucagon – a hormone that is produced by the liver to release glucose into the blood stream, thereby preventing seizure, coma and death.
The method for this procedure is to use a syringe of sterile water that the kit provides and inject the water into a vial of Glucagon powder, mix gently and withdraw the solution into the syringe and simply inject the child subcutaneously, not intravenously, anywhere there is a bit of padding. The importance of the response time cannot be overstated in the event of a rapid crash and ensuing risk of life that children with juvenile diabetes endure - every second counts.
Timing is crucial in the event of anaphylaxis as demonstrated by the death of Sabrina Shannon, the namesake of Sabrina's Law (Bill 3), passed in 2006. The concept behind epinephrine auto injectors (EpiPens) is very similar to the life saving Glucagon injection. I spoke and corresponded with other parents of children with T1D recently and they have met the challenge of Glucagon protocols in their children's schools through similar means. One mother volunteered around the clock at her son's school so that she would not let him out of her sight, "Velcro'd together" was her term for how close they are at school. Another mother also spent so much time at her daughter's school that the teachers privately agreed to inject her daughter should the need arise, despite protocols to the contrary. Fortunately, the parents and Type 1 Diabetics who shared their stories with me have never had an occasion to use the Glucagon.
As a family we were thrilled that Victory's principal, teachers, after school teachers and parent volunteers rallied for Owen and learned about juvenile diabetes with our diabetes nurse over a lunch hour. Owen's teachers met with my spouse and I to discuss the finer details
of his care, i.e. Owen's daily meal, snack, insulin and exercise schedule. We discussed Owen's requirements for low or high blood sugar levels, whether he would eat 15 g of carbohydrates for high blood sugar or sit out an athletic event in favour of a quieter activity when his blood sugar is a little high.
Similarly, we reviewed the emergency protocol in the event that Owen required emergency procedures for life threatening symptoms of low blood sugar when consuming carbohydrates in the form of orange juice or Dex4 tabs by mouth is impossible. The treatment for unresponsiveness in a child with T1D is an injection of Glucagon – a hormone that is produced by the liver to release glucose into the blood stream, thereby preventing seizure, coma and death.
The method for this procedure is to use a syringe of sterile water that the kit provides and inject the water into a vial of Glucagon powder, mix gently and withdraw the solution into the syringe and simply inject the child subcutaneously, not intravenously, anywhere there is a bit of padding. The importance of the response time cannot be overstated in the event of a rapid crash and ensuing risk of life that children with juvenile diabetes endure - every second counts.
Timing is crucial in the event of anaphylaxis as demonstrated by the death of Sabrina Shannon, the namesake of Sabrina's Law (Bill 3), passed in 2006. The concept behind epinephrine auto injectors (EpiPens) is very similar to the life saving Glucagon injection. I spoke and corresponded with other parents of children with T1D recently and they have met the challenge of Glucagon protocols in their children's schools through similar means. One mother volunteered around the clock at her son's school so that she would not let him out of her sight, "Velcro'd together" was her term for how close they are at school. Another mother also spent so much time at her daughter's school that the teachers privately agreed to inject her daughter should the need arise, despite protocols to the contrary. Fortunately, the parents and Type 1 Diabetics who shared their stories with me have never had an occasion to use the Glucagon.
The life and death scenarios that could
develop for students with T1D, however, shouldn't be left to the mercy of
empathetic teachers putting their jobs at risk. We are working with the
provincial and federal governments to formalize the protocol and pass a law (Bill
137) that clearly outlines the responsibility of the schools - all Guelph,
Ontario and every province and territory in Canada's schools to allow teachers
to inject Glucagon to save the lives of Canadian T1D students. Nova Scotia, New
Brunswick and Quebec have passed a Glucagon Law, and many school boards
including the Wellington Catholic School Board have expanded their protocol to
include Glucagon administration by teachers, perhaps in advance of full-day
kindergarten enrolment.
Victory
Public School’s after school care teachers are not permitted to administer
Glucagon to Owen due to the rental agreement they hold with the UGDSB. Consequently,
we have reluctantly withdrawn Owen from Victory Kids’ Club. We are not alone in
this struggle. In Cambridge, twin T1D students are in limbo as the school board
decides whether to run the after school care that currently allows Glucagon to
be given by the after school teachers and in doing so, the school board will
not allow its teachers to give Glucagon. The parents of the twins are hoping
that the status quo will prevail. We do have much support for this cause – educators,
paramedics, firefighters and other individuals from the community have
expressed their concern and offered their support for a change in the protocol.
When I discovered this gap in the emergency protocol policy after my son’s diagnosis, I was
informed that T1D parents are trying to have a law passed in favour of teachers injecting Glucagon, but nobody wants their child's name on this law. I couldn't agree more. Please consider updating the Upper Grand District School Board Glucagon Policy to include the administration of Glucagon by teachers to unresponsive Type 1 Diabetic students, kindergarten to OAC levels.
Best regards,
When I discovered this gap in the emergency protocol policy after my son’s diagnosis, I was
informed that T1D parents are trying to have a law passed in favour of teachers injecting Glucagon, but nobody wants their child's name on this law. I couldn't agree more. Please consider updating the Upper Grand District School Board Glucagon Policy to include the administration of Glucagon by teachers to unresponsive Type 1 Diabetic students, kindergarten to OAC levels.
Best regards,
Beth Mulkins
Tuesday, 12 March 2013
Advocacy in Canada
Here is a fantastic site for diabetes policy advocacy:
http://www.diabetesadvocacy.com/school_policies.htm
http://www.diabetesadvocacy.com/school_policies.htm
Tuesday, 19 February 2013
Glucagon Pen: A delivery system similar to the EpiPen!
I have been tormenting my brain thinking of a closed system for delivering Glucagon to type 1 diabetics similar to the EpiPen one pen system. It would involve a membrane between two chambers - one with sterile water and the other with the Glucagon hormone powder. A button or somesuch would be depressed to break the membrane to allow the water and hormone to be gently mixed and then the needle could be loaded and injected into the hypoglycemic, unconcsious T1D person.
Well...I was searching online to see if someone had actually developed anything similar and I found the following blog with the following information: http://www.diabetesmine.com/2010/07/enjects-glucapen-diabetes-answer-to-the-epipen.html.
The one-stop-shop quality of this injector would undercut some of the understandable consternation that people feel when presented with a life-saving tool, worried about making a mistake or hurting the prone person. This would remove much of that losing-valuable-time dithering that may result otherwise. I haven't had to deliver Glucagon in it's current two step incarnation as yet (hopefully never will) and I just hope I can keep it together in the heat of the moment because I am emotionally involved with my little guy (another person would likely show more objectivity than his mum).
I am going to research what has happened to this glorious design as the blog's date was several years ago.
Stay tuned...
Here is the Enject website: http://enject.com/Images_and_Videos.html.
So, it seems to me that it would be much easier to ask teachers to use a pen that is similar to an EpiPen in an hypoglycemic emergency than mix the powder and liquid together with a visible needle at the tip. For now though, the only option is the two-part system. I do wonder, however, which process will outsnail the other - the FDA approval of Enject or the UGDSB Glucagon Safety Protocol update or even the passing of a Glucagon Law similar to Sabrina's Law in Ontario/Canada? The FDA has had a significant head start, but then again slow and steady wins the race.
Well...I was searching online to see if someone had actually developed anything similar and I found the following blog with the following information: http://www.diabetesmine.com/2010/07/enjects-glucapen-diabetes-answer-to-the-epipen.html.
I am going to research what has happened to this glorious design as the blog's date was several years ago.
Stay tuned...
Here is the Enject website: http://enject.com/Images_and_Videos.html.
So, it seems to me that it would be much easier to ask teachers to use a pen that is similar to an EpiPen in an hypoglycemic emergency than mix the powder and liquid together with a visible needle at the tip. For now though, the only option is the two-part system. I do wonder, however, which process will outsnail the other - the FDA approval of Enject or the UGDSB Glucagon Safety Protocol update or even the passing of a Glucagon Law similar to Sabrina's Law in Ontario/Canada? The FDA has had a significant head start, but then again slow and steady wins the race.
Thursday, 14 February 2013
Go Team Glucagon!; Happy 8th Birthday Owen!
February 14th, 2013
Dear Ms Sandals and Mr. Valeriote,
I would like to say that despite my frustration with the process of updating the Glucagon protocol/Law, I do genuinely appreciate the effort and empathy that those involved have offered. I know that there are no monsters in this scenario - it really just my fear for Owen and my feelings of helplessness expressing itself.
I have put my career on the line in the past when I was incensed by an injustice and cannot expect everyone to do the same. I was probably foolish to do so, but do not regret it. For the record, in my letter I was suggesting that my spouse and I draft a waiver to absolve teachers of responsibility in case Owen does require Glucagon. If Owen's outcome is not positive after administering Glucagon, nobody would be liable. I would do that because I know that it would not be possible to hurt Owen by administering Glucagon and I would be grateful to anyone who tried to help him.
It is my sincere hope that by expressing my anguish about the molasses-in-January-like progress of due process, that I have not alienated those very people who hold the key to the emancipation of Glucagon administration. As you read in my letter, I am wont to descend into alliterative hyperbole when pushed to extremes - I do try to maintain a sense of humour despite my distress! My ire is heartfelt and not aimed at any individuals - just nebulous obstacles to my Glucagon end-goal.
Best regards,
Beth Mulkins
Dear Ms Sandals and Mr. Valeriote,
I would like to say that despite my frustration with the process of updating the Glucagon protocol/Law, I do genuinely appreciate the effort and empathy that those involved have offered. I know that there are no monsters in this scenario - it really just my fear for Owen and my feelings of helplessness expressing itself.
I have put my career on the line in the past when I was incensed by an injustice and cannot expect everyone to do the same. I was probably foolish to do so, but do not regret it. For the record, in my letter I was suggesting that my spouse and I draft a waiver to absolve teachers of responsibility in case Owen does require Glucagon. If Owen's outcome is not positive after administering Glucagon, nobody would be liable. I would do that because I know that it would not be possible to hurt Owen by administering Glucagon and I would be grateful to anyone who tried to help him.
It is my sincere hope that by expressing my anguish about the molasses-in-January-like progress of due process, that I have not alienated those very people who hold the key to the emancipation of Glucagon administration. As you read in my letter, I am wont to descend into alliterative hyperbole when pushed to extremes - I do try to maintain a sense of humour despite my distress! My ire is heartfelt and not aimed at any individuals - just nebulous obstacles to my Glucagon end-goal.
Best regards,
Beth Mulkins
Wednesday, 13 February 2013
The day before Superhero Owen's 8th birthday! Gabagabagabagabagaba, get to the point dahling! (Edna Mode, The Incredibles)
January 22, 2013
Dear Ms. Sandals and Mr. Valeriote,
I am contacting you today as a parent of a 7 year old boy, Owen,
recently diagnosed with Type 1 Diabetes. He was attending Victory
Public School until he went into the hospital in December. He is ready
to return to his friends and teachers, but there is a problem. The
injection of Glucagon, a life-saving measure necessary for severe
blood sugar lows, is not currently permitted to be administered by the
public school teachers in Guelph. Superintendant of Education, Brent
McDonald, plans to discuss the Public School Board emergency protocol
with a few of the authors of the policy this week, and perhaps we will
be closer to allowing Glucagon to be administered to students by
teachers at the public schools in Guelph. The Wellington Catholic
School Board recently adopted this protocol and Catholic School
students with T1D may now receive Glucagon at the schools in a life
threatening emergency. They have set an important precedent that was 2
and a half years in the making. The rest, theoretically, should be
easy for the other school boards to follow.
As a family we were thrilled that Victory's principal, teachers, after
school teachers and parent volunteers rallied for Owen and learned
about juvenile diabetes with our diabetes nurse over a lunch hour.
Owen's teachers met with my spouse and I to discuss the finer details
of his care, i.e. Owen's daily meal, snack, insulin and exercise
schedule. We discussed Owen's requirements for low or high blood sugar
levels, whether he would eat 15 g of carbohydrates for high blood
sugar or sit out an athletic event in favour of a quieter activity
when his blood sugar is a little high.
Similarly, we reviewed the emergency protocol in the event that Owen
required emergency procedures for life threatening symptoms of low
blood sugar when consuming carbohydrates in the form of orange juice
or Dex4 tabs by mouth is impossible. The treatment for
unresponsiveness in a child with T1D is an injection of Glucagon - a
hormone that is produced by the liver to release glucose into the
blood stream, thereby preventing seizure, coma and death.
The method for this procedure is to use a syringe of sterile water
that the kit provides and inject the water into a vial of Glucagon
powder, mix gently and withdraw the solution into the syringe and
simply inject the child subcutaneously, not intravenously, anywhere
there is a bit of padding. The importance of the response time cannot
be overstated in the event of a rapid crash and ensuing risk of life
that children with juvenile diabetes endure - every second counts.
Timing is crucial in the event of anaphylaxis as demonstrated by the
death of Sabrina Shannon, the namesake of Sabrina's Law (Bill 3),
passed in 2006. The concept behind epinephrine autoinjectors
(EpiPens) is very similar to the life saving Glucagon injection. I
spoke with mothers of children with T1D today and they have met the
challenge of Glucagon protocols in their children's schools through
similar means. One mother volunteered around the clock at her son's
school so that she would not let him out of her sight, "Velcro'd
together" was her term for how close they are at school. Another
mother also spent so much time at her daughter's school that the
teachers privately agreed to inject her daughter should the need
arise, despite protocols to the contrary. Fortunately, neither mother
ever had an occasion to use the Glucagon. The life and death scenarios
that could develop for students with T1D shouldn't be left to the
mercy of empathetic teachers. We should formalize the protocol and
pass a law that clearly outlines the responsibility of the schools -
all Guelph, Ontario and every province and territory in Canada's
schools to allow teachers to inject Glucagon to save the lives of
Canadian T1D students.
When I discovered this gap in the emergency protocol policy, I was
told that T1D parents are trying to have a law passed in favour of
teachers injecting Glucagon, but nobody wants their child's name on
this law. I couldn't agree more.
Please contact me to share your thoughts on the next steps to be taken.
Best regards,
Beth Mulkins
January 29, 2013
Dear Ms Mulkins
Thank you for your email to MPP Liz Sandals.
We are currently looking into the matter with the Ministry of Education
and the Upper Grand DSB.
We will get back to you as soon as we have received responses to our
inquiries.
Sincerely
Jenny
Jenny Waterston
Constituency Assistant for
Liz Sandals, MPP
Guelph
February 13th, 2013
Dear Ms.Sandals and Mr. Valeriote,
I appreciate the Ministry’s effort to investigate a change in the
Glucagon policy at the Upper Grand Public School Board to match the
updated policy at the Wellington Catholic School Board. I was so
touched that the Victory Public School teachers spent their lunch hour
on January 14th learning with our diabetes team nurse so that they
would know what to be watchful for when Owen (at this point the only
T1D student) was on the playground. I accompanied my son last week to
school to test his blood sugar before and after exercise to gain a
clearer understanding of his blood sugar rhythms during the school day
and to administer insulin at lunch. I was willing to join my son at
school while we were waiting for the Victory Kids' Club board of
directors to meet last Thursday to discuss the administering of
Glucagon by their staff to my son in a low blood sugar emergency.
The board president contacted me the other day to communicate the
board's response to our request to train their staff to use Glucagon
in the unlikely event that it may be necessary. The president told me
that there was concern among members of the board regarding liability
if the Glucagon was not administered properly. He also communicated
that the board was researching further whether or not as tenants of
the Upper Grand District School Board, that they would be permitted to
have their after school staff administer Glucagon.
What in the world is that about? What manner of insane pettyfoggery is
this? We have descended into the utterly absurd. Where is everyone’s
humanity? I have my emergency first aid certificate and go out of my
way to help strangers. I am deeply disappointed by the unprofessional,
inhumane behaviour that I am observing in my community school and
associated boards. I have no doubt that given the opportunity, one or
more of Owen’s kind teachers would have offered to intercede if the
situation demanded, but a pre-emptive strike by overzealous and
parsimonious policy pushers thwarted honest intentions.
As a parent who is witnessing Upper Grand District School Board
administration needlessly protect their careers, actively advising
teachers to not administer Glucagon should the unlikely need arise and
now actually digging for reasons to refuse us related only to a rental
agreement, I am beyond incredulous. Meanwhile, my son is making a
hugely rocky start to his life with type 1 diabetes because he will
always associate his diagnosis with this yawning void, the sudden
withdrawal from school that was unrelated to his newly regained health
and more importantly - educators taking a step sideways rather than
doing the right thing.
There is simply no risk to a person administering Glucagon just as
there is no risk to the Type 1 diabetic child who is unconscious and
close to coma or death - there is only help and revival in this one
small action. Imagine denying an inhaler to an asthmatic student or an
EpiPen to an anaphylactic child? I don't know how I am going to remedy
this with Owen - how am I going to explain that adults are more
concerned about something that seems uncharacteristic of Canadians -
to be concerned about lawsuits and their careers rather than giving a
simple life-saving subcutaneous injection to a student? In each and
every case of type 1 diabetic students attending public schools in the
Guelph and Kitchener-Waterloo area that I know of, there is a person
on the school premises willing to administer the hormone despite the
"risk" to their career. Teachers have been actively advised not to do
so at Victory Public School.
In other instances, in other schools, I doubt very much that teachers
were advised not to administer Glucagon. I believe that the situation
was simply left to let cooler heads prevail and allow the entire
matter to be considered in perspective, i.e. it is highly unlikely
that this small service should ever be asked of anybody, but it gives
peace of mind to know that if necessary, this small inconvenience
would have hugely beneficial consequences for the T1D student and
their family.
I would be an irresponsible parent to consider sending Owen to school
where there is nobody to step in if necessary. My last hope was that
the after school teachers would be on the premises and able to respond
if necessary. A parent of twin T1D girls in Cambridge is struggling to
maintain the after school program that is independent of the school
board so that the public school board Glucagon policy does not impinge
on his daughters' ability to receive Glucagon. Montessori after school
care guidelines allow for Glucagon. Why does it need to be the Wild
West - a mad Darwinian experiment that sees only the well-connected
survive? While this process is drawn out, we must have one parent at
home with Owen and we have continued to pay for after school care that
we have not used since November for fear that the after school staff
may be our only lifeline to a normal school life for Owen. We have
waited for their monthly board meeting and now we wait for another and
how many more? We have offered to sign a waiver to allow staff to give
Glucagon with a rock solid guarantee from us that we won't sue if our
son's Glucagon injection goes “horribly awry”. That was intended to be
facetious because it is a ridiculous notion. Frankly, I am more likely
to file a lawsuit if someone doesn't try to help my son as he dies.
That was not intended to be facetious.
After speaking to the director of the Catholic School Board, I
followed her recommendation on January 25th to contact another person
who, subsequently, did not reply until today, February 13th when I
learned that there are “protocols” non-Catholics must follow. I have
requested clarification of the protocols and await a reply. I have had
condescending advice from those at UGDSB policy making level that of
course there is always the Glucagon pill - problem solved. Even though
CCAC healthcare personnel were advising in a meeting regarding
Glucagon in the schools, somehow the fact that an injection is only
necessary in the case of an unresponsive/unconscious student was
misplaced in the meeting. The concept of placing anything at all -
particularly a pill or gel that could be choked on - inside the mouth
of an unconscious child is appalling and absolutely not what our
paediatrician advised on our emergency protocol sheet at the school.
He clearly states that in the event of unresponsiveness, call 911 and
administer Glucagon (by injection). Incidentally, I was forced to
amend the section of the emergency protocol sheet where we mention “
911/Glucagon”. It has been bracketed and underlined with my initials
to indicate that when the safety protocol and/or Law are
updated/passed that includes the administering of Glucagon to all T1D
students in need, we will change the notation to include Glucagon. I
sold my soul for that initial and bracketed notation.
As time drags on, Owen is feeling pretty dark about his diagnosis -
life cannot resume as normal. He is caught in this mess of
bureaucratic red tape that makes me ashamed of the people who I
thought put children first.
Best regards,
Beth Mulkins
Dear Ms. Sandals and Mr. Valeriote,
I am contacting you today as a parent of a 7 year old boy, Owen,
recently diagnosed with Type 1 Diabetes. He was attending Victory
Public School until he went into the hospital in December. He is ready
to return to his friends and teachers, but there is a problem. The
injection of Glucagon, a life-saving measure necessary for severe
blood sugar lows, is not currently permitted to be administered by the
public school teachers in Guelph. Superintendant of Education, Brent
McDonald, plans to discuss the Public School Board emergency protocol
with a few of the authors of the policy this week, and perhaps we will
be closer to allowing Glucagon to be administered to students by
teachers at the public schools in Guelph. The Wellington Catholic
School Board recently adopted this protocol and Catholic School
students with T1D may now receive Glucagon at the schools in a life
threatening emergency. They have set an important precedent that was 2
and a half years in the making. The rest, theoretically, should be
easy for the other school boards to follow.
As a family we were thrilled that Victory's principal, teachers, after
school teachers and parent volunteers rallied for Owen and learned
about juvenile diabetes with our diabetes nurse over a lunch hour.
Owen's teachers met with my spouse and I to discuss the finer details
of his care, i.e. Owen's daily meal, snack, insulin and exercise
schedule. We discussed Owen's requirements for low or high blood sugar
levels, whether he would eat 15 g of carbohydrates for high blood
sugar or sit out an athletic event in favour of a quieter activity
when his blood sugar is a little high.
Similarly, we reviewed the emergency protocol in the event that Owen
required emergency procedures for life threatening symptoms of low
blood sugar when consuming carbohydrates in the form of orange juice
or Dex4 tabs by mouth is impossible. The treatment for
unresponsiveness in a child with T1D is an injection of Glucagon - a
hormone that is produced by the liver to release glucose into the
blood stream, thereby preventing seizure, coma and death.
The method for this procedure is to use a syringe of sterile water
that the kit provides and inject the water into a vial of Glucagon
powder, mix gently and withdraw the solution into the syringe and
simply inject the child subcutaneously, not intravenously, anywhere
there is a bit of padding. The importance of the response time cannot
be overstated in the event of a rapid crash and ensuing risk of life
that children with juvenile diabetes endure - every second counts.
Timing is crucial in the event of anaphylaxis as demonstrated by the
death of Sabrina Shannon, the namesake of Sabrina's Law (Bill 3),
passed in 2006. The concept behind epinephrine autoinjectors
(EpiPens) is very similar to the life saving Glucagon injection. I
spoke with mothers of children with T1D today and they have met the
challenge of Glucagon protocols in their children's schools through
similar means. One mother volunteered around the clock at her son's
school so that she would not let him out of her sight, "Velcro'd
together" was her term for how close they are at school. Another
mother also spent so much time at her daughter's school that the
teachers privately agreed to inject her daughter should the need
arise, despite protocols to the contrary. Fortunately, neither mother
ever had an occasion to use the Glucagon. The life and death scenarios
that could develop for students with T1D shouldn't be left to the
mercy of empathetic teachers. We should formalize the protocol and
pass a law that clearly outlines the responsibility of the schools -
all Guelph, Ontario and every province and territory in Canada's
schools to allow teachers to inject Glucagon to save the lives of
Canadian T1D students.
When I discovered this gap in the emergency protocol policy, I was
told that T1D parents are trying to have a law passed in favour of
teachers injecting Glucagon, but nobody wants their child's name on
this law. I couldn't agree more.
Please contact me to share your thoughts on the next steps to be taken.
Best regards,
Beth Mulkins
January 29, 2013
Dear Ms Mulkins
Thank you for your email to MPP Liz Sandals.
We are currently looking into the matter with the Ministry of Education
and the Upper Grand DSB.
We will get back to you as soon as we have received responses to our
inquiries.
Sincerely
Jenny
Jenny Waterston
Constituency Assistant for
Liz Sandals, MPP
Guelph
February 13th, 2013
Dear Ms.Sandals and Mr. Valeriote,
I appreciate the Ministry’s effort to investigate a change in the
Glucagon policy at the Upper Grand Public School Board to match the
updated policy at the Wellington Catholic School Board. I was so
touched that the Victory Public School teachers spent their lunch hour
on January 14th learning with our diabetes team nurse so that they
would know what to be watchful for when Owen (at this point the only
T1D student) was on the playground. I accompanied my son last week to
school to test his blood sugar before and after exercise to gain a
clearer understanding of his blood sugar rhythms during the school day
and to administer insulin at lunch. I was willing to join my son at
school while we were waiting for the Victory Kids' Club board of
directors to meet last Thursday to discuss the administering of
Glucagon by their staff to my son in a low blood sugar emergency.
The board president contacted me the other day to communicate the
board's response to our request to train their staff to use Glucagon
in the unlikely event that it may be necessary. The president told me
that there was concern among members of the board regarding liability
if the Glucagon was not administered properly. He also communicated
that the board was researching further whether or not as tenants of
the Upper Grand District School Board, that they would be permitted to
have their after school staff administer Glucagon.
What in the world is that about? What manner of insane pettyfoggery is
this? We have descended into the utterly absurd. Where is everyone’s
humanity? I have my emergency first aid certificate and go out of my
way to help strangers. I am deeply disappointed by the unprofessional,
inhumane behaviour that I am observing in my community school and
associated boards. I have no doubt that given the opportunity, one or
more of Owen’s kind teachers would have offered to intercede if the
situation demanded, but a pre-emptive strike by overzealous and
parsimonious policy pushers thwarted honest intentions.
As a parent who is witnessing Upper Grand District School Board
administration needlessly protect their careers, actively advising
teachers to not administer Glucagon should the unlikely need arise and
now actually digging for reasons to refuse us related only to a rental
agreement, I am beyond incredulous. Meanwhile, my son is making a
hugely rocky start to his life with type 1 diabetes because he will
always associate his diagnosis with this yawning void, the sudden
withdrawal from school that was unrelated to his newly regained health
and more importantly - educators taking a step sideways rather than
doing the right thing.
There is simply no risk to a person administering Glucagon just as
there is no risk to the Type 1 diabetic child who is unconscious and
close to coma or death - there is only help and revival in this one
small action. Imagine denying an inhaler to an asthmatic student or an
EpiPen to an anaphylactic child? I don't know how I am going to remedy
this with Owen - how am I going to explain that adults are more
concerned about something that seems uncharacteristic of Canadians -
to be concerned about lawsuits and their careers rather than giving a
simple life-saving subcutaneous injection to a student? In each and
every case of type 1 diabetic students attending public schools in the
Guelph and Kitchener-Waterloo area that I know of, there is a person
on the school premises willing to administer the hormone despite the
"risk" to their career. Teachers have been actively advised not to do
so at Victory Public School.
In other instances, in other schools, I doubt very much that teachers
were advised not to administer Glucagon. I believe that the situation
was simply left to let cooler heads prevail and allow the entire
matter to be considered in perspective, i.e. it is highly unlikely
that this small service should ever be asked of anybody, but it gives
peace of mind to know that if necessary, this small inconvenience
would have hugely beneficial consequences for the T1D student and
their family.
I would be an irresponsible parent to consider sending Owen to school
where there is nobody to step in if necessary. My last hope was that
the after school teachers would be on the premises and able to respond
if necessary. A parent of twin T1D girls in Cambridge is struggling to
maintain the after school program that is independent of the school
board so that the public school board Glucagon policy does not impinge
on his daughters' ability to receive Glucagon. Montessori after school
care guidelines allow for Glucagon. Why does it need to be the Wild
West - a mad Darwinian experiment that sees only the well-connected
survive? While this process is drawn out, we must have one parent at
home with Owen and we have continued to pay for after school care that
we have not used since November for fear that the after school staff
may be our only lifeline to a normal school life for Owen. We have
waited for their monthly board meeting and now we wait for another and
how many more? We have offered to sign a waiver to allow staff to give
Glucagon with a rock solid guarantee from us that we won't sue if our
son's Glucagon injection goes “horribly awry”. That was intended to be
facetious because it is a ridiculous notion. Frankly, I am more likely
to file a lawsuit if someone doesn't try to help my son as he dies.
That was not intended to be facetious.
After speaking to the director of the Catholic School Board, I
followed her recommendation on January 25th to contact another person
who, subsequently, did not reply until today, February 13th when I
learned that there are “protocols” non-Catholics must follow. I have
requested clarification of the protocols and await a reply. I have had
condescending advice from those at UGDSB policy making level that of
course there is always the Glucagon pill - problem solved. Even though
CCAC healthcare personnel were advising in a meeting regarding
Glucagon in the schools, somehow the fact that an injection is only
necessary in the case of an unresponsive/unconscious student was
misplaced in the meeting. The concept of placing anything at all -
particularly a pill or gel that could be choked on - inside the mouth
of an unconscious child is appalling and absolutely not what our
paediatrician advised on our emergency protocol sheet at the school.
He clearly states that in the event of unresponsiveness, call 911 and
administer Glucagon (by injection). Incidentally, I was forced to
amend the section of the emergency protocol sheet where we mention “
911/Glucagon”. It has been bracketed and underlined with my initials
to indicate that when the safety protocol and/or Law are
updated/passed that includes the administering of Glucagon to all T1D
students in need, we will change the notation to include Glucagon. I
sold my soul for that initial and bracketed notation.
As time drags on, Owen is feeling pretty dark about his diagnosis -
life cannot resume as normal. He is caught in this mess of
bureaucratic red tape that makes me ashamed of the people who I
thought put children first.
Best regards,
Beth Mulkins
Wednesday, 30 January 2013
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.
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.
Monday, 28 January 2013
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.
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.
Monday, 21 January 2013
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.
Monday, 14 January 2013
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.
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.
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.
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