Replies to This Discussion

Permalink Reply by Peter Gracie on November 19, 2010 at 5:19pm

Hello Cheryl
I would like to help solve your situation. But first, let me tell you about myself. Please endure my stumbling.
I have been a T1 for 34 odd years. I started my life as a diabetic child of 8 with a glass syringe, 25G needle, test tubes and clinitest tablets for urine testing. I loved watching the test tube change colour. Over time that method of controlling T1 is similar to the insulin pen and blood glucose meter however at a buck a strip I think I would prefer the urine testing for its cost, simplicity and reusable nature of the equipment. I myself have been on a pump since about 1995-96, I can't remember how long now. I am lucky. At 17 I became what I am now at 42, an active 25 year and still going, participant in Diabetes Research. EDIC being the follow up of the DCCT, is still providing valuable information to controlling T1 to prevent complications. Caught early your son Jacob will live long if he so chooses.
Technology has changed and your son should be allowed access to the same tools that us in the southern climes of Canada have. Is it possible to contact the government at any level to get funding to have a remote Diabetes Care/Patient link via the internet and an insulin infusion pump, Continuous Glucose Monitor and appropriate computer hardware/software. Radio technology transferring BG monitor, CGM data and pump information to the internet through various product. All of which would allow you to upload daily results to get online advice from your Dr. and RN. Perhaps the physical aspects of T1 control, like HbA1c and examinations and such could be done by a local Dr. and results or samples mailed to Edmonton for further scrutiny and advice. It would save on time and travel expenses, except for an annual trip to the Clinic to get a thorough examination to stay on top of ANY early development of complications to Jacob and giving you peace of mind that your questions are answered. It would ultimately be very cost effective and beneficial to every child who has no choice but to soldier on as the different kid in the classroom. Excuse me if you already have a set up like this. I love to help so please don't hesitate to reply, if you want...I'm not nuts.
Good luck and
Kindest Regards
Pete

Permalink Reply by Cheryl on November 19, 2010 at 5:41pm

Thanks Pete for responding. The situation in Inuvik involves the only T1 patient in that territory, not my son, but the son of another tudiabetes member, and the pediatrician that the health care department sent the child to recommends that the best care for the child going forward, at least for the time being, is via personal visits to a diabetes center within a hospital environment in Edmonton. So far, from what I understand the family is not being given any hope of access to an insulin pump and cgm for treatment at this point in time, which I agree with you, would be ideal, particularly for managing distance care and review of regular input. What Jacob's mother is looking for is support from the T1 community on the importance that BOTH parents not just one be granted travel expense approval by the territory to attend scheduled endo visits, something that most T1 parents take for granted.

Cheryl

Permalink Reply by maureen on November 19, 2010 at 6:10pm

Thanks Cheryl! I agree a pump would be the best but as you said it is not being offered to us by our team at this point in time. I am hoping that we will be able to discuss this at our next visit. What we need is approval for both Roger and I to travel as Jacob's escorts so that we can both attend the doctor appointment and the education sessions with the CDE and dietitian. It would be nice if coverage could be extended to our other son as well, but that is just a pipedream! I have no one that we could leave him with, so he does have to travel with us....I really need this added stress!! Thanks again.

Permalink Reply by nel on November 19, 2010 at 5:32pm

I feel sad reading this .A few thoughts : Maureen needs to speak to her MLA and MP, other politicians if possible in person , telephone or by mail .Spoken word needs to be followed up by written word .Moving to another province is out of the question , I would think .
Are there Service Clubs , who may want to assist ? Try : S.U.G.A.R. in Burlington , ON http//www.sugarcharity.org

I checked for CDA offices and the closest one is in Edmonton ...ASK for ideas. What is Edmonton Endo Team suggesting ??. Is there someone in Edmonton, who can come along to the appointments ? So if Mom and son travel , Dad and Jesse are in Inuvik. Who takes care of Jesse as I am certain Dad is working ?
This does NOT appear an easy solution .

CDA : Northern Alberta and Northwest Territories Regional Leadership Centre
1010-10117 Jasper Ave NW
Edmonton, AB
T5J 1W8
Phone: (780) 423-1232 begin_of_the_skype_highlighting              (780) 423-1232      end_of_the_skype_highlighting
Fax: (780) 423-3322
Office Hours: 8:30 am - 4:30 pm Monday to Friday .

Permalink Reply by Cheryl on November 20, 2010 at 5:48am

Thanks Nel,

I know that Maureen is calling and is writing and does write each time that Jacob is scheduled for visits to Edmonton. What might help is if various members here can provide some input on how diabetes affects an entire family not just the child that is diabetic and that being present for healthcare meetings and understanding changing care regimens is important for both parents. I know you were diagnosed as an adult, but I also know that you receive a great deal of support from your husband. It might help Maureen if people would add to this discussion explaining how the support of immediate family members is important to a diabetics mental health and physical health and that for a child, having both parents understand changing care regimens is essential.

In our household, care was supervised by myself when it came to my son's diabetes more so than my husband and that caused more than one issue during the early years when our son was with his Dad somewhere separate from me and was not well prepared to deal with a minor crisis. Things as simple as forgetting the emergency pack that we keep and not knowing what type of insulin needle and insulin to buy, not knowing what ratio to use to calculate an insulin dose for lunch, or a huge issue once changing out the pump reservoir and running into error messages when Dad and son were away at a hockey tournament and I was away elsewhere at a work conference.

Our departments of health are making decisions that affect families without any understanding of the sort of training that is ongoing and provided to parents attending endo visits with their children. Everyone's comments here might help Maureen and others to get the support from governments to ensure that both parents have the option of attending a T1 child's endo visit.

Cheryl

Permalink Reply by nel on November 22, 2010 at 4:52pm

I get what you are saying Cheryl about support and I am probably not even the right person to respond as one who diagnosed well past the " juvenile " years.
I think traditionally it is the Mom , who spends time with the child and from the experience I have in knowing parents with children it is the Mom , who attends functions , training sessions etc. . I do recall meeting a Father , whose son is a pumper and the couple have split ; he was clear he wanted to know more about pumping , for when his son was spending time with him .
One of the parents from my community told me , that when their son was diagnosed the parents , including 2 children, too young to be left at home all went to Children's Hospital in Vancouver, BC ...they did not receive any financial help from the BC Government ...this was in early 2000 .
Maureen stating, that Children's Hospital/Edmonton as well as the doctor in Inuvik that both parents share in Jacob's care should be shared with those , who make the rules .

I am going to give a few more ideas , who to contact as well and hope these folks will respond to Maureen and Husband's request : Shriners office@al-azhar.ab.ca Phone (403) 239-0030
and Children's Variety Club www.variety.bc.ca/
Hope this is helpful .

Permalink Reply by Cheryl on November 22, 2010 at 6:08pm

Thank you Nel,

I really appreciate your input. For us here in Ottawa, certain endo team appointments can be attended with only one parent present, but some, such as moving on to MDI with carb counting and then on to pumping would not have been held if both parents could not make themselves available to attend team sessions. We did both attend, whenever both were required to attend, but still had very unequal balance when it came to actual care as you have seen with a number of families. I too have met a number of Dad's through seminars that I have attended that are attending info sessions and looking into gaining more information for their T1 children, particularly when it comes to managing T1 and sports. I know that there are many Dads out there with T1 children that are very involved, including my son's Dad.

This child has not been to visit his endo team since March. He was supposed to go during the summer, but Inuvik healthcare cancelled travel coverage, after initially approving, when the family went on vacation, even though the travel cost from the vacation start point was substantially less than the travel cost from Inuvik to Edmonton. Inuvik healthcare cancelled out stating that coverage for travel could only be accomodated if the family travel originates in Inuvik, regardless of the increased cost.

So the child is due to go for his re-scheduled endo visit in December with no travel cost approval for anyone at this point and as Maureen tells us, government travel cost approvals are granted with frequency for abortion and teen drug abuse. So how is that fair then to deny travel coverage for healthcare for a T1 child. Is it at age 7 that he has used up his lifetime provincial/territorial travel allowance? I just find it really frustrating. Instead of granting coverage the territory decides that a travelling pediatrician will now be designated as responsible for this child's healthcare going forward. The family went to the travelling pediatrician as requested and were told by the physician that the child needs the specialized care that the Edmonton Children's Hospital offers. Now they are trying to track down a letter from this source to add to the letter from the Edmonton hospital endo in their letter writing.

Just hoping that some Moms and Dads or other T1's like yourself will read this and will add letters of support encouraging Inuvik healthcare to provide the child with the best source of care, a pediatric endocrinology team, not a travelling peditrician, and not the local pharamacist. I am sure it is more cost efficient to send the family to the team in Edmonton than to send a team to the family. Here in Plantagenet, near Canada's capital city, Ottawa, we have the luxury of access to a superb pedriatic endo team. The level of care should be similar for all Canadian children.

Cheryl

Permalink Reply by nel on November 23, 2010 at 11:07am

I agree about your comment " the level of care should be similar for all Canadian children ( an adults for that matter !) ...it takes dollars and time to for the CDA and anyone else to be involved in Advocacy with the Feds and Provincial /Territorial Governments . Another Diabetes Day on the Hill is planned for December .One of my reasons, why I continually fund raise , because I know Advocating WORKS ...your province is proof , mine is proof ...pumps supplied for type one-ers.
In the mean time , since process takes time I still suggest for Maureen to connect with the organizations and Service Clubs mentioned in my responses .Yet, I have not read anywhere , if you or Maureen have made contact and ASK for financial assistance or suggestions .
On the side : my pumper buddy's family here in town was successful by contacting Service Clubs ( Lions are very involved with supporting Diabetes ) prior to the government supplying pumps to kids .
I much agree, what Peter Gracie's response /suggestion is : an insulin pump with download information , that can be analyzed regularly by the Team in Edmonton and see an Endo once yearly .
Please don't get me wrong with my responses ...sometimes we need to look outside the realm of possibilities .

Permalink Reply by Cheryl on November 23, 2010 at 12:54pm

Thanks Nel,

I will remind Maureen of the suggestions to contact service groups and I am in full agreement with both you and Peter that if they could get Jacob on a pump where the complete details could be downloaded and then receive feedback on adjustments, that it would be ideal and it certainly could reduce the number of visits where they would need to be physically present, face to face with the Endo team.

You are right that advocacy is the way to go and I do recognize that it takes time for change to occur and it also takes perseverance. I am guilty of letting issues fall to the wayside, because the fight at times seems never ending and yet if Maureen could get the government to recognize the benefit, she just might get access to a pump for Jacob in addition to an on-line working arrangement for reporting to the endo team in Edmonton. Certainly worth her efforts to try!!!

Thanks again for your input.

Cheryl

Permalink Reply by nel on November 23, 2010 at 2:53pm

Does Jacob's Dad have an Extended Health Plan through his work , which may cover part or all for a pump ??
I can't recall , without reading all the responses on the discussion/DTC ...did the family apply for DTC ??

Permalink Reply by Cheryl on November 23, 2010 at 6:03pm

Nel,

I believe Jacob did qualify for the DTC, but don't know if Maureen has confirmation yet, whether or not Dad's insurance will cover a pump. They end up in a bit of a catch 22 though since I can't see the Edmonton team moving along with a change in therapy if the family does not get into Edmonton for team visits and training. Jacob was diagnosed this time, last year, and has not been moved on to carb ratio's and so on at this point, so a fair bit of a learning gap to move right on to pumping.

In my mind, since Inuvik health does not have experience with the needs of T1 children or adults, I just thought that it might help Maureen's letter writing cause if other T1's could give her some feedback on their views on the need for specialized care. If she can show Inuvik that protocol in other provinces dictates the need for an endo team, nutritionist, certified diabetes nurse educator, endocrinologist and certified diabetes pump trainer, where applicable, it might help her to show the government that endo team care, with regular quarterly visits is the norm, not a luxury.

While Ontario recognized the benefits and moved forward on pumps first for children, then T1s of all ages and is now reviewing policy to include certain T2s, the province is very precise about confirming that individuals receiving a pump grant use the pump properly and attend endo team visits. The endo has to sign an annual declaration confirming certain aspects of use, for grant dollars for supplies to continue.

Cheryl

Permalink Reply by maureen on November 23, 2010 at 8:13pm

Hi Cheryl,

We finally qualified for DTC...I appreciate your efforts in gaining support for my family to attend endo visits in Edmonton. We are not at the pump stage yet as you have said we are not even doing carb ratios yet. Once our team gives us the go ahead for a pump, we will get a pump, somehow someway. I believe the discussions have been going in the wrong direction, we are not discussing whether a pump would be covered or not, we just want travel to the appointments for both parents. Both my husband and I have great health insurance coverage, so I think when the time comes for a pump, we won't have any issues...unless things change! And no, we are not leaving the Territories so that we can be closer to the clinic. My husband has a great job here, it is our home, why should we have to move to get the same treatment as fellow T1 families in the South? I know you don't think this is the answer...In other respects, we have really good support through the school system, Jacob has a half-time assistant that is with him for half of the day. A public health nurse has held several teaching sessions with the staff at Jacob's school and taught 5 of them how to use glucagon if need be. All staff were educated on hypoglycemia and the signs to look for with Jacob. Our local doctors do the best they are able to, whenever he is sick, we go to the local ER and we are seen immediately, no wait time at all. Roger and I have been educating everyone we come into contact with such as other parents, hockey coaches, curling coaches, etc. Luckily, we are in a small town and everyone knows Jacob...he told me yesterday that older kids come up to him all the time and ask if he is the kid with Type 1 diabetes and then tell him that's cool...at least they aren't harassing him because of it. The kids in his class know to watch him and go to the washroom with him to wash his hands before testing, they use a buddy system. Inuvik is a great place to live and we have no desire to live elsewhere.

I think getting the Territories to see that they are not following the rest of Canada's protocol when it comes to caring for Type 1 diabetic children as per the rest of Canada is the point we need to get through. Maybe a policy could be looked at closer and changed with more information and examples from other T1 families in Canada...

We got some good news today: we called one of the local airlines and told them that Jacob had a medical in Edmonton and one parent would be travelling (stil waiting on the approval but pretty sure they will cover this) and asked them if they would be willing to give the medical rate to the other parent and Jesse. They said YES, so we've booked mine and Jesse's tickets at half of the regular rate, so we can afford that. But I still believe that we have a right as Canadians to equal healthcare for our children and that Jacob's travel for both parents should be covered for all trips to the pediatric diabetes clinic in Edmonton.

I have not contacted any service groups as yet because I am waiting on my follow-up emails to the Premier of the NWT, the Minister of Health and Social Services, etc. Before I contact service groups, I would like to think that I have exhausted every avenue with the government....still thinking I may take this to the press if it does not go well...

Again, very much appreciate what you are trying to do. Emails of support from other parents in other provinces saying that this is the normal treatment of Type 1 diabetes for a child in Canada. Thanks Cheryl!

Maureen

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