Friday 30 May 2014

No Sugar Tonight

Earlier this year our friend's son was diagnosed with type one diabetes.  Nearly six months later, after a big learning curve for everyone involved they want to share in their experience to help promote awareness and education to parents, teachers, caregivers or anyone touched by by diabetes.  Hopefully this will act as a resource to anyone who has questions about the realities of living with diabetes.  This is a multi-part series and will include the perspective of Martin and his 11 year old son Rehan so stay tuned...


What were the first red flags for you that something was going on with Rehan?
The first time we really noticed something was wrong was around Christmas when he seemed to be drinking A LOT of water.  One time in particular that comes to mind as a big red flag that something was wrong was during a trip to IKEA around Christmas when he seemed desperate for another drink. At first we chalked it up to it being winter and dry, but this was the first time we first started thinking about the possibility of diabetes. Unfortunately we didn't act on it immediately.  As the month of January progressed, he became more and more tired and eventually was unable to participate in physical activity for more than a few minutes without complete exhaustion. He also started loosing weight dramatically from his already skinny frame. The final straw was when the stomach pains started.  We went to a doctor and he ordered a blood test. The results of high blood sugar came in at 1:30AM and the doctor called and told us to go to the hospital immediately, we knew things were serious.

childrens diabag sample diabetic kit for kids
This is a picture of Rehan's 'diabag' containing all of the things he needs to bring with him to stay healthy



"Because we knew nothing about the symptoms of diabetes before he was diagnosed, I feel it is important to educate other parents about the following symptoms":

1. Excessive Thirst
2. Frequent Urination
3. Weight Loss
4. Low Energy / Lethargy
5. Stomach Pains

If your child experiences any of these symptoms I highly recommend seeing a doctor as soon as possible." Martin


What was your initial reaction to the diagnosis?
A combination of relief that we finally knew what was wrong with him, combined with shock that this had happened to our son. He was so very sick through January and was getting worse each day that we were glad that we finally knew exactly what was wrong with him and that it could be treated effectively. We had to learn a great deal about managing this disease in a very short time in order to be able to bring him home from the hospital.


What are some major challenges you face on a day to day basis?
The biggest challenge is just to focus on keeping at it every day without a break. Treating diabetes is a marathon, not a sprint. To keep his blood sugars under control, every thing he eats has to carefully measured and calculated.  He takes at least 4 injections per day and an average of 10 blood sugar tests per day right now. It is a lot of work that doesn't ever take a break for weekends or holidays. Barring a cure, this level of treatment will be with him for the rest of his life.


How has diabetes impacted your day to day schedule?  Your meal planning?
Our day to day schedule now revolves around his insulin shots and meals. Each morning before 8:30 he has to have his basal injection, and another bolus injection to cover the carbohydrates in his breakfast. We prepare his school lunch the night before labelling all the food with the carbohydrate content. At school a nurse comes in for each nutrition break to help him inject insulin to cover the lunch, and keeps us informed through text messages of his blood sugar levels. For dinner, all of the food that he eats has to be weighed and the carbohydrates calculated as he eats it to calculate the amount of insulin needed to cover his dinner. We always have to be prepared with extra food and have insulin available at any time to cover for situations where his blood sugars go out of range.  We test his blood sugar again in the evenings and before bed. If we have to give a correction at that time then we will test again in the middle of the night to make sure he is not hypoglycemic which can be deadly. 

What about the costs of medication?
We are fortunate to have good drug coverage so all of the test strips and insulin have been covered by our drug plan. The bill from the pharmacy is around $500 per month, most of which is for the blood sugar test strips. Next year he is likely to go on an insulin pump which will also be covered by OHIP, and a Continuous Glucose Monitor (CGM) which is not covered. The CGM will cost between $200 and $400 per month.

Stay tuned for the second part of the series about common misconceptions, sports participation post diagnosis and other road blocks.

To celebrate his 40th birthday and run for the cause Martin is running a 5KM to help fight the disease iva JDRF.  To find out more about the JDRF click here.  To support Martin click here

3 comments:

  1. Thanks for the interview. I would also like to say that I am raising money for the JRDF in celebration for my 40th birthday. Please feel free to donate to this worthy cause at http://jdrfca.donordrive.com/campaign/Martin40

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  3. Hey Sara and Martin, thanks for working on this and posting this. Both Martin and I are trying to raise awareness of the symptoms. Martin, you did a good job of portraying our "new normal". Another symptom to note is that they can start throwing up bile. Our son Rehan didn't describe what was happening accurately (he didn't really know) so the doctor's office kept saying that they would not give him an appt. because they thought that it was the flu. Very frustrating. - Posted by Naz (Rehan's mom).

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