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Nov 14, 2022

A Guide to Raising a Child with Diabetes Type 1 | Simone's Story

“I’m a wellness guru and people think I’m the cause of my son’s diabetes.”

In early 2022, little did Simone know her and her son’s lives were about to change forever following a difficult diagnosis. As part of our on-going mission to raise awareness of this misunderstood condition, we recently spoke to Simone about her 6-year-old son, Ashton, and his experience with Type 1 diabetes, after being diagnosed earlier this year.

Take a look at the challenges that diabetes Type 1 presents on a daily basis, and how caring for a child with diabetes has impacted Simone’s day to day life as a mother and business owner. 

 

What were the symptoms?

Initially, Ashton presented very few ‘traditional’ symptoms of diabetes, leading us to believe that his behavioural issues could be a sign of having ADHD, rather than anything more sinister. He had an awful temper and would often go crazy for unexplained reasons when he hadn’t eaten. Subsequently, we booked in to get him checked for ADHD – which we learnt down the line that he didn’t have, but his temper was in fact, caused by something else. 

Things got significantly worse when we went to Portugal in 2021 and he was screaming and crying, threatening to harm himself. Typically, after a healthy, carb-free snack he would calm down, although he would be mentally and physically exhausted and red in the face for long periods of time afterwards. We thought it was an emotional condition.

 

How did Ashton get diagnosed?

One day, after watching Paddington Bear, I gave Ashton a very rare treat - his first ever jam sandwich. Thinking nothing out of the ordinary, we drove to football where he then began to rock in the car, tapping his head and complaining of blurry vision. I took him straight to the doctors to get checked out and he was found to have sky high sugar levels, which they said was a key symptom of diabetes type 1. 

Needing a full assessment and diagnosis, we then proceeded to spend 6 hours waiting to be seen in hospital. Naturally, after 6 hours had passed, Ashton’s sugar levels went back in range, so the doctors said it was a misdiagnosis and sent us home. 

Then came the dreaded phone call. The next day, the phone rang and we were told by the hospital that there had been a mistake and we needed to come in immediately. Subsequently, we spent a further 10 days in Poole Hospital where Ashton had to undergo examinations, treatments and lots of needles (a huge fear of his.) He was also formally diagnosed with T1D.

I can’t commend the Diabetes care team in Poole Hospital enough for their support since Ashton’s diagnosis. Open 24/7, 365 days a year, with doctors who call you back within minutes – they really have given us the highest quality of care throughout this difficult journey.

diabetic-child-sleeping-in-hospital

What is the difference between diabetes Type 1 and Type 2?

There’s a huge misconception with diabetes, and when people find out I have a son with this condition, they immediately go on to blame the parent, questioning that a wellness expert has been giving him the wrong foods and overloading him with sugar.

Both types of diabetes present their share of challenges but are ultimately the cause of completely different things.

 

Type 1 Diabetes – What is it?

Type 1 diabetes is an autoimmune disease and genetic condition that often shows up early in life. While neither Ashton’s father or I have diabetes, we believe it could have come as a result of my extremely low blood sugar levels, or the short period of time when his Dad had diabetes as a result of a brain tumour. With this type of diabetes, the immune system incorrectly attacks beta cells in the pancreas, until the pancreas is unable to produce any insulin by itself. Therefore, people with T1D are required to inject themselves with insulin to compensate.

 

What is Type 2 Diabetes?

Lifestyle factors play a large role in the development of type 2 diabetes, causing the pancreas to be unable to use the insulin it produces effectively. In time, the body will stop producing enough insulin, so it can no longer use glucose effectively. Therefore, it tends to be later in life when people with T2D need to begin managing their blood glucose levels. 

 

How have you managed his symptoms post-diagnosis?

Post-diagnosis, we have had to significantly adapt our lifestyles to help manage Ashton’s diabetes, but we are lucky to have the support of lots of incredible people and revolutionary technology.

Omnipod systems

Ashton’s insulin is delivered through an Omnipod, which is a tubeless, wireless insulin management system that is placed on the body, under clothing, using adhesive. The insulin pump delivers precise doses of insulin based on the instruction you programme into the diabetes management system. 

diabetic-child-with-omnipod

FreeStyle Libre Sensor 2

Ashton also uses the Freestyle Libre 2 Sensor, a continuous glucose monitor which allows for a finger-prick free way of monitoring glucose levels with accuracy. As Ashton has a fear of needles, it was important for us to find a way to manage his condition in the least stressful way, whilst still being extremely reliable and accurate. One of the biggest advantages of this system is that it has built in glucose alarms. A very loud alarm will go off when your glucose levels are too high or too low, and help to manage your child’s blood sugar.

We are incredibly fortunate to have been given access to this system straight away, due to Ashton’s condition. However, they are a huge cost to the NHS at £50 per 14-day libre, and also require you have to a contract mobile phone, which I pay £20 for monthly. Unfortunately, not every family is in this privileged position and diabetes management systems should be available to families across the country, without breaking the bank.

freestyle-libre-2-glucose-monitor

Dietary changes

As a nutrition advisor, I understand the importance of healthy eating in day-to-day life for gut health, mood, hair and overall wellness, and have always given my children organic and healthy homemade food. Since diagnosis, I have had to adapt mealtimes to be mindful of Ashton’s condition, while still allowing him the occasional treats every child deserves.

After I go food shopping, I will weigh and individually label each and every food item with corresponding nutritional information which really helps when it comes to calculating his carbs at mealtimes. A difference of just 10 carbs can have a devastating effect on his health, so it’s imperative I get this right. I also carry scales to restaurants so that we can weigh the ingredients and calculate the carbs. 

Ultimately, even while Ashton eats the best diet possible and I do what I can, this condition is extremely unpredictable and food items will react differently in his body every single day. Although it’s desperately upsetting to know that I can only do so much to help, I will continue to do what I can to set him up for a healthy, positive future where he can avoid as many of the challenging symptoms of diabetes type 1 as possible.

 

Friends, Family & Support 

Ashton and I are lucky to have a great support network around us, with people looking out for him day in and day out. His school and head teacher have been incredibly supportive, and a number of teachers have now been diabetes trained. The head gardener, who is also diabetic, has been a good friend to Ashton and will often walk the school dog with him around the grounds when everything is feeling a bit too much. After Ashton really struggled with his mental health and thought that diabetes would be the end of a good life, we enlisted the help of Mary Mindfulness throughout the summer, and she has helped to transform his outlook on life. She now spends time helping at Ashton’s school. 

Having a good group of friends, family, peers and colleagues is so important to help not only his mental state of mind, but also my own. Knowing you’re not alone has helped us get to this challenging, but much more positive place we are in now. 

 

What challenges does he face? 

Since being formally diagnosed with Diabetes type 1, Ashton has faced extensive problems, not only physically, but also mentally and emotionally.

The physical symptoms vary day to day, but have included low mood, stomach pain, weight loss, dizziness, tiredness, weakness, a poor immune system and terrible infections from the binding glue on his OmniPod.

He has also been much more restricted in the places he can go and what he can do. He can no longer go to Birthday parties unaccompanied as no one will know what to do if he eats food and needs to inject insulin, he can’t take the bus with other children and he can’t even take a bath without the OmniPod falling off. These emotional changes have been detrimental to his mental health and have been challenges we have had to face frequently. My hope is that we can gradually train him up to be able to manage his symptoms and eventually he will have that all important independence we all need.

child-with-type-1-diabetes

Has diabetes impacted your family life? 

As a family, it’s been tough. At the beginning, it felt as if I’d gone back to baby stages. I get tired with such responsibility on my shoulders, and I feel I need about ten of me! It has affected my relationship with Ashton’s father, and no doubt it effects the kids seeing me resentful, exhausted and arguing with their dad. I need to plan where I am at all times and go nowhere without orange juice, a medical bag with needles, scales, carb and carb free snacks. It is a lot of responsibility, and I am lucky to be my own boss so am available in emergencies to pick up Ashton and take him to hospital. But not everyone is so fortunate.

simone-and-diabetic-son 

Where does Ashton see himself in the future?

Ashton is adamant that he will go on to prove the Royal Air Force wrong and become the first RAF diabetic pilot (and rockstar!) The RAF have a strict protocol on who can join the air force due to the significant number of applicants they receive, but this hasn’t been reviewed in years. Another dream of his is to become a rockstar. Ultimately, he’d like to be able to fly to his own concerts and be the perfect hybrid of Joe Wicks and Chris Martin – a healthy, rockstar!

I know Ashton, and I know he will make it happen.

diabetic-son-on-the-beach

 

Advice for families of young people with diabetes

Having a child with type 1 Diabetes is extremely tough, but there are ways to manage it and build up a good routine. My main piece of advice would be to carefully choose who you want to train and trust with your child’s diabetes. This autoimmune disease requires extensive work and training, so be wise in who you choose to have those responsibilities.

It is also crucial that you work somewhere with a boss that can support you. You will need to leave work early, check your phone and have days where it all feels too much – so a supportive environment is non-negotiable and will have a huge impact on your journey.

Other things that have worked well for us as a family is implementing nightly workshops. Together we will go through meal plans, superfoods, different food groups and reward charts. This is a fun and interactive way to boost Ashton’s knowledge of the condition and get everyone involved.

 

Do you offer any products that help children with Diabetes? 

Despite calling them ‘sugar free’ I was stunned at the shocking effects Calpol and other medications had on Ashton’s levels, and he required insulin after taking them. I am looking to create a multi-vitamin for children with diabetes, that can boost their wellbeing without the need for insulin. I am also keen to develop a cookbook for families of diabetic children, on a budget.

 

How can we help? 

Science and medicine are advancing and there is currently testing for a stem-cell based treatment for diabetes. With your help, we can help quickly advance a cure for type 1 Diabetes. No child should have to suffer mental and physical pain from such illnesses.

Please do what you can and register to become a stem cell donor and help your genetic match. It could be someone’s brother or sister you are helping and takes just five minutes to sign up. https://www.dkms.org.uk/

Together, we will beat Type 1 Diabetes
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