Support for Parents of children with type 1 diabetes

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Rosaleen Bradley is a mum four children; 3 boys; and to Beth age 5, who was diagnosed with type 1 diabetes in April 2016. The Bradley family live in Donegal.Rosaleen very quickly realised that having support from extended family members was going to be very important for them to be all that they needed to be to support Beth. They also realised that Beth’s school needed to be supportive also.

 

"Here’s our Story..... Beth Bradley Age 5 - Diagnosed with Type 1 Diabetes 23rd April 2016

Photo supplied by Rosaleen Bradley

Words continue to fail me when I attempt to describe that horrific feeling that ran through my veins as our Local GP turned to me, with so much empathy in his eyes, and said “Your Daughter has Type 1 Diabetes”. Internally, I battled with my emotions as I allowed my mother’s instincts of protectiveness to kick in to ensure that my devastation wasn’t obvious to my beautiful little girl, who would inevitably have this cross to bear for the rest of her precious life. Although very unaware of the complexities and impact of Type 1 Diabetes at this point, I felt very strongly that this would not change the feisty little girl that we had. I knew how important it would be that she remained the strong and positive wee lady she had always been.

We spent 7 days in hospital trying to gain control over her blood glucose whilst getting what seemed like a very intensive crash course on how to keep our little girl alive. I certainly considered ourselves lucky, firstly due to the early diagnosis which had avoided a DKA scenario, but secondly, because of the invaluable support we got from the diabetic nurse, who herself has type 1 diabetes. I honestly believe she went way beyond her call of duty to ensure that every aspect of diabetes was covered during our stay.

Beth continued to thrive although her wee personality didn’t make things easy during that week for staff. Beth developed a tendency to bolt from the ward for every insulin injection. We found her in various places like fire cupboards, behind nurse stations and under consultant’s desks throughout the week. This was heart breaking, but my husband and I both knew that this ability to fight back would see her through some tough years ahead. We found that the more we learned about diabetes the scarier it got. Yet, having so much to learn meant that folding, emotionally, as we felt like doing, just wasn’t an option. We needed to absorb so much information in so little time.

Being discharged and returning home with Beth to her Dad and three adoring big brothers was almost as scary as the initial diagnosis. The overwhelming need to get back to “normal” or indeed our new “normal” presented many challenges such as figuring out school arrangements and trying to give both our boys, immediate family and friends, an insight into the impact of this diagnosis. We found ourselves completely exhausted and reluctant to share how completely terrifying diabetes was for us, fearing that it would cause a barrier to their normal interactions and time with Beth. Very quickly, the standard answer to the question “How’s Beth?” became “Fine”.

We are very grateful, though, to have had family who saw through this and asked the question again. They took the time to learn how to manage Beth’s diabetes so that we could have respite from time to time which has been invaluable. I think it’s vital to seek out those who are willing to be of a practical support to you and invest your, limited time, and energy into giving them the training and confidence they need to best support you.

Photo supplied by Rosaleen Bradley

Returning to school was an issue for us, as Beth’s existing school showed very little desire or competency in putting measures in place to ensure her safety. They would have been quite happy for me to come in to do all that was required but I didn’t feel that that was acceptable at any level. I needed to continue to work. And I needed to know that Beth was in an environment that understood the necessity for monitoring her and have the ability to ensure a positive perception around her diabetes. We took a decision to move Beth to a new school. And I haven’t looked back. We are delighted with the approach that her new school has taken to her diabetes and we can both feel confident in her care throughout the day which is so important.

Beth herself inspires us each and every day with her strength, sense and positivity. She has a very no-nonsense approach to people who don’t understand diabetes, which is comical at her age and has often been heard telling people “well you’ll just have to learn” or “mammy can write it down for you and I can go with you then”. She uses the Freestyle Libre which we wouldn’t be without and by now there is not a kid on the street that doesn’t know how to scan her blood glucose levels. I am not sure that sharing our story will benefit anyone, but for me, taking time to reflect has given me a certain sense of release and acknowledge how far we’ve come.

Little did I know seven months ago when setting out to the GP’s that our lives were about to change forever but we’ve met some great people along the way. We still have our great wee family and although I know diabetes will continue to be a challenge for us all, it won’t beat us. To all parents of children with Type 1 out there “I genuinely salute you”

Rosaleen Bradley

 

Thank you Rosaleen for this wonderful piece. If you are a parent of a child with type 1 diabetes and you would like to either connect with the Diabetes Online Community, or if you would like to meet other families living with type 1 diabetes in real life, and believe me now is the time with all of those christmas events happening in those groups, follow this link.

Thriveabetes Conference 2016 Photos

Thriveabetes 2016 took place in The Killashee House Hotel, Naas, Co. Kildare on Saturday, October 1st 2016. It was a one day conference for people living with type 1 diabetes in Ireland. For many years, people with diabetes have been connecting with others from all over Ireland through the Diabetes Online Community. So a group of volunteers have created Thriveabetes to give this community the opportunity to meet face to face in real life.

There were 248 individuals at Thriveabetes 2016;

– 62 children aged 5 to 16 years

– Approximately 70 adults living with type 1 diabetes and

– Approximately 90 parents of children with type 1 diabetes.

We had 45 people on a waiting list and it never seemed to get shorter! Most of whom were looking for more than one ticket to Thriveabetes. This demonstrates a clear demand for this type of event which ensures it’s future for at least another year.

It was the second Thriveabetes to take place. In 2015, 190 people attended from all over Ireland.

Here are some photos of Thriveabetes 2016. Enjoy the memories.

 

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The team at Thriveabetes would like to send a huge thank you to Mark Condren and to Barbra Hackett who spent the days with us taking these fabulous photos.

Freestyle Libre Review from a Teen

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The Abbott Freestyle Libre was launched for sale in Ireland on November 1st. Click here to find out more about the Libre, what it does and how much it costs. And click here for some information on saving money on the Libre. The Libre is a less invasive method of checking blood glucose levels and provides a profile of blood glucose trends in a graph on a reader device for up to 14 days. Representing Thriveabetes, Rebecca Flanagan attended an advance briefing on the Abbott Freestyle Libre with several other members from the diabetes blogging community on October 13th. Hailey who is 16 and has lived with type 1 diabetes for eight years has never used a device this the Libre before. She manages her diabetes on Multiple Daily Injections (MDI) and blood glucose testing on a traditional meter.

 

Rebecca & Hailey’s Review of the Abbott Freestyle Libre.

in Rebecca's words.

My daughter, Hailey, was given the opportunity to test the Abbott Freestyle Libre before it hit the Irish market for retail. I was very excited about this, having read many other people's testimonies after they bought the starter packages from England. It was amazing to also get the opportunity to see how the device works, in detail, especially how small and soft the actual sensor under the skin is - technology is fascinating! I couldn't wait to get Hailey started. She is very sensitive and has a very low pain tolerance, so after psyching herself up she had me insert the sensor She said it didn't hurt going in, but afterwards there was some residual pain for a couple minutes as her skin got used to the intrusion. After that she hardly knows it's there.

Rebecca and HaileyWe have not looked back since. The accuracy has been spot on. She is able to see where her sugars are going, especially when she starts to feel a low come on - I think there is a lot of comfort knowing, after treating a low, that the sugars are coming up again and this is clearly seen on the sensor after scanning. Over-treatment of lows are now more easily avoidable. The graphs are also such a blessing in order to see the trends, such as when she usually spikes or might go low. This information is invaluable in trying to maintain the correct insulin levels she needs, especially as she is on MDI.

I think that for parents of younger children especially, this device is a game changer when it comes to night checks - no more waking up your poor child unnecessarily if you don't need to! A simple scan will let you know whether they are safe and in what direction their sugars are going. For times of illness, the Libre will also be amazing.

Although there is quite a high financial burden attached to the Libre at the moment, I would hope that the clinics will see major improvements in the HbA1C's of patients using the Libre and this information will eventually help make a valid claim for the Libre to be included on the LTI. I am very excited for our next appointment! The additional benefits of less invasive blood glucose testing and the discretion the Libre allows are also important, but I think we all know that it comes down to the long term benefits. If we can offer devices like this that will bring about better blood glucose control which ultimately results in less long term complications, then everyone wins.

Hailey's thoughts on the Libre: 'The Libre encourages you to stay more 'in control' because there is no hiding from the readings. As in, with a normal finger prick test, you could KNOW that your sugars are spiking but your reading at the time can be in range when you do the blood test. With the Libre you can easily continue to scan and watch where the numbers are going and take action as needed. Over time you should see your readings become way more level. I much prefer the Libre to regular finger prick tests - and my fingers do, too!'

Hailey also told me that she feels that the Libre encourages more frequent testing. This is a great thing for a mother of a teenager to hear!!

 

DISCLAIMER

Abbott paid for Rebecca's travel expenses from Clare to attend their briefing but they did not ask her to blog about or influence her opinions of the Libre. Abbott did ask that Rebecca’s daughter try out the Libre and gave her the complete starter pack with two sensors for free.

CONFIDENTIALITY

We also had to agree to not discuss our briefing outside of the room until the media embargo was lifted on November 1st. This was really difficult, I think for all of us as members of the diabetes community and not being able to talk about it with our community. This was really difficult!

Freestyle Libre briefing group photo.