Diabetes, Education, Health, Parenting, T1D

4 Mothers, 4 Questions (Part 2)

4 Mothers, 4 Questions (Part 2)

Continuing this 4 part series, today we meet Jenni Cipriani, a full-time mother (a.k.a. Superhero Jack of all Trades) from Thornbury, near Bristol in the UK. She shares the story of when her son, Bradley, was diagnosed with Diabetes mellitus Type 1 at just 14 months old and what we can do to improve the current diagnosis process.

Jenni&Bradley
Jenni and Bradley

What is your child’s diagnosis story?

It was 18th September 2010, when Bradley was diagnosed with Type 1 Diabetes. He was just 14 months old. Leading up to that day, I had noticed that Bradley was losing weight, sleeping in longer in the mornings and suddenly napping during the day for hours (when he wouldn’t normally nap at all). He was raiding the cupboards for food straight after I had fed him but he wasn’t gaining any weight at all, he was also very constipated. Looking back, I know now that the most obvious sign was how much he was drinking, he would gulp down beakers and beakers of water. In the mornings he would wake up absolutely drenched in his own urine; his nappy full to the brim and his pyjamas soaking wet. At the time, it was very easy to find an explanation for everything: he’s tired because he has just learnt to walk, he’s hungry and thirsty because he is more active and that must be why he is losing weight, his nappies are wet through because of his increased thirst etc.

But on the morning of 18th September 2010, Bradley’s health deteriorated. His breathing had become very laboured, he was drifting in and out of consciousness and he had a sweet smell to his breath. My Dad and I couldn’t wait any longer for the call back from our GP so we took Bradley directly to our local A&E department at the hospital. There we explained his symptoms and sat down to wait, but within 5 minutes someone came to get us. Bradley was ushered into a room where they tested his blood glucose levels straight away. The results came back: 29 mmol/L (a non-diabetic person is between 4.0 to 6.0 mmol/L), and that was when they told us he was a Type 1 Diabetic. Subsequent testing discovered that his ketone level test was around 7 mmol/L, whereas a normal person will be under 0.6 mmol/L (above 3.0 mmol/L is ‘a dangerous level of ketones which will require immediate medical care’). At which point we were rushed to Bristol Children’s Hospital in an ambulance where we stayed for 4 nights.

Bradley_diagnosis (1) copy

How did you feel when you heard the diagnosis ‘type 1 diabetes’?

I am embarrassed to say that I was relieved upon hearing he had T1D. Not because it was a good thing, but because I had no idea what it entailed and I was just relieved I had an answer as to why he was so poorly. I remember a couple of children (back when I was in school myself) who were T1D but all I really saw was that they carried extra food like biscuits. I also knew they had injections but to what extent, I was clueless. Once we got to Bristol Children’s Hospital and the doctors and nurses started talking to me in detail about Diabetes mellitus Type 1 (T1D) it was then that it really hit home, and it hit me very hard. I could not believe that this was going to be my son’s life from now on. I struggled to accept he would need 4 or more injections a day, bi-hourly blood glucose testing or an emergency box kit in our fridge door containing glucagon just in case he fell unconscious from a hypo. All I wanted to do was wake up from this nightmare, but that couldn’t happen, this was our new reality, this was his life now. Instead, I put my fears aside and tried to take it all in; I listened in great detail to everything the doctors and the diabetes specialist nurses told me. When they asked if I wanted to try and do the first injection I said ‘yes’ and just got on with it for the sake of my son, I knew I needed to be strong for him.

In your opinion, how could improvements be made to the diagnosis process in future?

Whilst some parents end up visiting a GP before the symptoms deteriorate, many don’t. This is largely because the symptoms come and go over a fairly long period of time, and they don’t all present themselves together until right at the critical point. So, like many other parents, I did not have any contact with a GP about Bradley or my concerns until the day we ended up in A&E. That means the actual diagnosis process for us was very quick. That said, the A&E nurse knew to take a blood glucose test immediately and I do think that more routine tests in GP’s when children present with at least one of the ‘4 T Symptoms’ (tired, toilet, thirst and thinner) would be an ideal way to stop misdiagnosis and catch it earlier and thus not once the person is in Diabetic Ketoacidosis (DKA).

Bradley
Bradley (2017)

If you could share one piece of advice to other parents around the world, what would it be?

Make yourself aware of the symptoms of TD1, the 4 T’s (tired, toilet, thirst and thinner). If I had known these then I would have taken Bradley to the doctors a lot sooner. He had slowly been losing weight over a period of about 2 months and he would not have been as poorly as he was at diagnosis. It was heart breaking for me to see him so ill and if I could have prevented that by knowing the symptoms then I would have. Nowadays, it’s something that I try and make people aware of in my network.

#weneedacure

Diabetes, Education, Health, Parenting, T1D

4 Mothers, 4 Questions (Part 1)

4 Mothers, 4 Questions (Part 1)

On July 11th 2017, BBC Wales published the story of Peter Baldwin, a 13 year old boy who tragically died before his condition, Type 1 Diabetes, could be diagnosed. He didn’t live in a third world country where there is a lack of access to adequate healthcare and resources. He lived in Wales, where a publicly funded healthcare system operates and yet still, his condition (which according to the WHO affects over 420 million people globally), went undiagnosed. That such a common and well researched disease can still go undetected in the UK should astonish and terrify us all. The story of Peter Baldwin has inspired me to talk to other mothers of diabetic children and ask them their diagnosis story and what, in their opinion, could be done to improve the current situation.

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Anwen and Olivia

Olivia Owen is a Community Staff Nurse in Merthyr Tydfil, South Wales, today she bravely shares her story with you.

What is your child’s diagnosis story?

“My daughter Anwen, always was and still is, a very active, vivacious, chatty, bright and energetic child with an adventurous and fearless spirit. Shortly after Christmas 2015, Anwen (aged 9), was briefly unwell with a viral throat infection. She fought it off with her usual vigour but from then onwards, she became more frequently fatigued and listless. At the time I put this down to various things: busy weeks at school or not going to bed early enough (iPad related) which of course you do as a Mother. In February 2016, I took her to see our GP; Anwen was complaining of abdominal pain and pain when going to the toilet. At this point, I should mention that the GP carried out a urinalysis and found that Anwen had a urine infection (which I suspected). I didn’t, for a second, consider diabetes; so I didn’t question whether or not the urinalysis was positive for glucose or ketones. I assumed if it had been, the GP would have noticed. But I often think maybe she didn’t look for it and maybe the events of the following month would have been prevented if she had. Anwen completed a course of antibiotics though continued to be frequently fatigued and out of sorts.

“Following Anwen’s birthday in early March 2016, I noticed that she had become even more tired and listless and had a bit of a head cold which we treated as normal with paracetamol and fluids. On 10th March 2016, Anwen had some friends to sleepover as a birthday treat. Of course we pulled out all the stops: pizza, sweets, crisps, a chocolate fountain and a birthday cake. All was well until the early hours of the morning when Anwen was really nauseous and complaining of stomach pain….I blamed it on all the junk she had eaten…little did I realise.

“The next morning I went to work as normal, leaving Anwen with her Dad. I should say at this stage that I am a nurse and was at the time working on a busy acute surgical ward. While reflecting on the events of the night before, a colleague mentioned in passing “she’s not diabetic is she?”, to which I actually chuckled. As the day went on though, the thought of diabetes stayed with me but I kept talking myself out of it. When I got home that evening I went to my Mother-in-Law’s house to pick Anwen up. And there she was, she had just come out of the bath and was wearing an oversized t-shirt, the image still upsets me today because she was so pale with sunken eyes and she looked so thin. I knew…I could have cried there and then.

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Anwen in hospital

“We made a plan. My husband would take her to the GP first thing in the morning with our concerns and I would take a urine sample to work with me to test. That night Anwen woke up about four times to ask for water and was passing urine very frequently. I knew. The next day, her urinalysis was positive for ketones, glucose and acidosis. I passed this information on to our GP and Anwen was admitted immediately to hospital for treatment and Type 1 Diabetes was also confirmed. Anwen had a 24 hour stay in hospital to rectify her pH levels which only rebalanced after approximately 10-12 hours of IV fluids and insulin. Our very brave girl gave herself her first insulin injection with very little drama and fuss the following morning thanks to the excellent support from her Diabetes Specialist Nurse. I must say from the moment of her admission to hospital; the care she received was second to none and continues to be so 2 years on.”

How did you feel when you heard the diagnosis ‘Type 1 Diabetes’?

“I suppose this is where things are a little different for me being a nurse because I didn’t hear the diagnosis or the even the possibility of a diagnosis from somebody else. I had essentially figured it out myself when her symptoms became acute and we had her admitted. I had also prepared my husband, son and family the night before her admission. Initially I was in autopilot; I wanted to get her well. I wanted to know everything: every result including renal function, liver function and every pH test they took in that first 24 hours. I had seen the effects that uncontrolled Diabetes has on a person so I was devastated. It felt like a loss, like I was grieving for the life that she should have had. I was angry. Why my child? If I could have taken the disease for myself I would have, and I still would. But the real and unrelenting heartbreak for me is that I didn’t see it sooner, I should have seen it sooner. I know about Diabetes, I’ve studied it and treated patients with it so why did it take me so long to figure it out? I think that guilt will be with me forever. The first few weeks, post-diagnosis, was all about learning as much as we could on how best to treat Anwen and supporting her with self-care. Those initial acutely raw feelings evolved into more positive feelings of acceptance and determination to own and control this condition together as a family.

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Anwen post-diagnosis

“Anwen is now 28 months post-diagnosis and I must say she is an absolute inspiration. Her condition is well controlled on the whole with an insulin pump. She manages to juggle school, hobbies, school trips and going out with friends together with all the added extras of hypos and hypers, blood testing, carb counting, bolousing etc. She rarely complains or gets fed up and aside from prompting and support from us she is pretty independent with her diabetes care. I still have moments of sadness when I think of how much she has to deal with on a day to day basis, what may be in her future and what challenges she is yet to face but I wouldn’t be a Mother if I didn’t.”

In your opinion, how could improvements be made to the diagnosis process in the future?

“I think that Type 1 Diabetes should be highlighted to parents more at every point of contact very much like Meningitis is currently. I believe that there is a real lack of knowledge in the symptoms of this condition amongst parents. I also think that GPs should be considering the condition when a child presents with so called ‘non-specific symptoms’. At present, in ante-natal clinics, baby clinics, GP surgeries etc. you see lots of posters and pamphlets giving information on various childhood illnesses and I feel that Type 1 Diabetes should be there too. Due to a very successful campaign on Meningitis I think the majority of people know the symptoms and I feel the 4Ts campaign could garner the same results.”

If you could share one piece of advice to other (non T1D) parents around the world, what would it be?

“Trust your instincts. Don’t doubt yourself. You know your child better than anyone so fight for them. Remember the 4Ts of Type 1 Diabetes.”

THIRST   TOILET   TIRED   THINNER

Diabetes, Education, Health, Parenting, T1D

Managing mood changes

Managing mood changes

Today I would like to open the doors on what goes on behind the scenes of a T1D child. What do they feel that we parents cannot see? What do they want to tell us but are too young to possess the vocabulary or verbalise their emotions? These, and many more questions, often race through my mind. Taking on the full time job of a pancreas isn’t just about calculating carbohydrates, night time blood tests or insulin pump therapy; it is equally as important to understand the side effects this disease has on your child’s brain and subsequently, personality.

It all starts with the physiology of diabetes. I will never be able to fully appreciate what our son physically and mentally feels when he experiences a hypo or hyper, I can only describe to you what I have been told. According to the experts: diabetics, when a child is having a hypo they feel weak, dizzy, confused and shaky. This fantastic 3 minute video of four woman describing how they physically feel and mentally react during a hypo is well worth your time.

excuse me while

In the jungle, the mighty jungle

It is quite common for a T1D to suffer from ‘hypo-unawareness‘, particularly in young children who are naturally less aware of their body and how it functions. Hypo-unawareness is physically dangerous, but it is also a mental battle for the patient and for those who care for them. When our son Noah, is feeling these symptoms his insulin pump will give me a warning alarm (caveat: there is a 20 minute, give or take, communication delay between his body and the pump) and I can treat the hypo for its physical effects. There is no medical treatment for the mental effects of a hypo. In our experience, Noah morphs from an adorable kitten to a roaring lion in a nano-second. He goes from “Mummy I love you to the universe and back” to a vein-popping, red faced animal screaming inaudible words that make no sense anyway. Unlike typical child-like tantrums (which he naturally has too, yey! 🙂 these appear as is if from nowhere. Sometimes his behaviour is quicker to burst forth than the pump’s warning alarm and we can tell he is having a hypo simply from his monumental meltdown over inconsequential nothingness. Even though I know his diabetes is just ‘having a conversation with me’, I confess, I sometimes feel embarrassed when we are out in public. There are occasions when I have been in the supermarket or walking down the street and Noah’s diabetes wants to have another ‘chat’ with me. Millions of parents know the look you get from strangers on the street; you know the one, it appears that you cannot control your own child. I get those same looks but sometimes I just want to scream ‘you have no idea what he battles with inside!

The value of a support network

Noah can also become confused during a hypo and he finds it difficult to concentrate. Whilst these are less fiery side-effects they cause me more long-term concern than the tantrum-style behaviour. I know the meltdowns will become easier as he gets older but he has already started school and now I find myself wondering how hypos will affect him in the future. How will Noah cope with T1D together with his education? Will it impact his academic ability? How can we help him now to learn to overcome these issues down the line?

According to this scholarly article we are already using the best possible therapy to support Noah’s mood and behaviour. ‘Continuous subcutaneous insulin infusion’ or insulin pump therapy has been very effective in reducing the frequency of hypos in T1Ds and the results show improved mood and behaviour changes in young children. So is that all that we have at hand to help? My answer to this is: I don’t think so. Whilst it is notoriously difficult to measure neurological impact of T1D and, from what I can gather, is something that experts vary in opinion on, frequently the following cognitive elements are reported to be affected by T1D: intelligence (general ability), attention, processing speed, memory, and executive skills. I am not a scientist and I haven’t done any research into this, I am also only two years in as a T1D carer but my firm belief today is that all of these cognitive domains can also be greatly influenced by the parents, teachers, siblings, social circles, mentors and extended family etc. who surround the child.

And what about hypers? Someone once described to me that a hyper is like having a massive hangover, but without the nausea part. The patient is very thirsty, has severe headaches and lethargy. It isn’t rocket science to realise that these are not attributable feelings to a productive day at school or work. For the last year, Noah experiences an (as yet) unresolved hyper every morning after his breakfast. His glucose levels soar, sometimes triple the amount of a non-T1D and try hard as we might, we haven’t yet fixed this ‘bug’ in his daily routine. Nevertheless, off he marches every morning to school, feeling like he drank himself under the table the night before. For now, I simply admire his strength but I worry about when he becomes a teenager, how will he find the will to keep concentrating on math, or history or grammar when he mentally becomes aware that he has a choice?

And speaking of teenagers, puberty is a notoriously challenging period for many diabetics, but I will leave this topic for another day, another year even. The underlying point here is that T1D presents enormous challenges both physically and mentally. Both require a bachelor degree level of understanding to deliver optimal short and long term care. Both take place behind the scenes and in front of a crowd but T1D is so massively misunderstood by many (including me before my son’s diagnosis) that raising awareness and understanding is a monumental challenge, but one that many can be proud to be passionate about.

#weneedacure

Diabetes, Education, Health, Parenting, T1D

When ‘I’ is replaced by ‘we’…

“When ‘I’ is replaced by ‘we’…

…even Illness becomes Wellness”. I came across this quote from Malcom X and find it rather fitting for this blog post. This week is Diabetes Awareness Week in the UK and today I wish to share with you a brief and personal view on the clinical team who treat our son Noah. I have discussed previously some of the challenges Kasper and I faced during our early training. I want to emphasize again that without these professionals our child’s life expectancy would be much shorter and his daily physical struggle would be so much harder. When Noah was diagnosed, we didn’t realise how privileged we were to have access to this expert team. I have since learnt that even in research-intensive countries, like the US or the UK, access to similar resources coupled with high quality care varies substantially. It is for these reasons that shining a light on the magnificent work that takes place behind the scenes is, for me, a no-brainer.

Angels in disguise
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Dr. Els van Straaten

Let me take you back to the day Noah was diagnosed in September 2015. We left the hospital carrying this new bomb shell, with the promise that someone was going to call us and tell us what to do next. Dr. Els van Straaten telephoned that evening; earlier that day Noah had received his inaugural boost of chemical insulin and she needed to advise us on getting Noah through his first night. The following day, puffy-eyed, bewildered and deeply confused, we arrived at the DiaBoss clinic located in OLVG West Hospital, Amsterdam, The Netherlands. The clinic quickly became our home from home. Over the next two weeks, Kasper and I underwent intensive training on the what, how, why etc. of treating a child with T1D. One of the first things Dr. Els van Straaten said to us that morning was ‘I may have worked with diabetic children for over 25 years but in 12 months time, YOU will be the experts in your son’s diabetes‘. That sounded totally alien to me at the time; I was struggling to understand the simple stuff like why we count carbohydrate units and not sugar units in food, or how many times a day he would need his blood tested, but I never forgot it. What she failed to mention, however, in that unforgettable moment, was how this metamorphosis from ‘ignorant to expert’ would only take place because of the incredible work, dedication, expertise and patience exhibited by herself and the team around her. We were not alone.

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Marion Tillman

Meet Marion, Noah’s diabetes nurse. Marion is really special. Our daily/weekly contact always starts with Marion; never has her patience faltered nor was she too tired or too busy to extend her unyielding care to Noah. What many of us often forget, or underestimate, is the emotional trauma that a T1D child suffers following diagnosis. For some this lasts a few months and for others it takes years to overcome. We all remark on how small children are tougher than they look, and it is very true; but still they suffer deep trauma. Noah exhibited the impact of his trauma when he became selective mute at school and shut down completely in front of everyone, except his family, over an extended period of time. The reason I am telling you this is because he didn’t shut down for Marion. She had gained his trust like a family member, he knew he was safe with her, he knew she cared for and helped him. That, together with her exceptional experience, is why she is a true angle in disguise.

Taking control back

ninjas-37770_1280Kasper and I have been working with the clinical team at ‘DiaBoss’ (based on the concept of being the ‘boss’ of your own diabetes, and not the other way round) for almost two years now. From our perspective, they operate an unequivocally effective triage of priorities. Firstly, they have built a team of highly skilled pediatricians, nurses, dietitians, child psychologists and administrators; all specialised in treating T1D in young children and juveniles. In short, they are the ninjas when it comes to fighting diabetes. Included in this, is their fight to push the boundaries and further improve health insurance coverage for T1D treatment here in The Netherlands. Secondly, these ninjas not only work with the latest treatment techniques and technology, they also actively seek input from world class experts when new questions or puzzles arise. And thirdly, they bring a superhero level of PMA (positive mental attitude) in delivering tailor-made care; not only for the patient but for the whole family. They put the ‘we’ into everything they do so families like us and kids like Noah don’t feel so alone in the struggle to learn to live with this disease.

Side by side

I am always touched by the interminable enthusiasm the DiaBoss team extend when asked for help in non-clinical matters. They understand how extremely important the parent’s coaching role is in the child’s long-term health. This understanding lays the foundation for their support also within the child’s environment. When Noah started school, Marion visited his school, spoke to his teachers, provided them with information and further support when they needed it. That level of care and attention for one child is mind-blowing when you give it some deeper thought. How many visits must they make each week or month? And yet, these resource-intensive initiatives are exactly what guarantee The Netherlands can truly acknowledge they lead the way in juvenile T1D care.

Here is my list of highlights where I believe DiaBoss prove they turn adequate care into phenomenal care:

  • They hug you when you cry; they completely understand how bewildered and terrified you feel. They are a clinical team who operate like human beings.
  • The DiaBoss helpline is open 24 hours a day, 7 days a week; we can always speak to an on-call diabetes pediatrician who knows everything about our son’s specific case.
  • A few months ago Noah got really sick: he had classic stomach bug symptoms. We had no idea he was suffering from his first diabetic ketoacidosis. His nurse, Marion, distinguished the difference over the telephone and made sure we got to the hospital on time.
  • They never run out of patience when you accidentally get a correction bolus wrong, forget to change a cannula or misunderstand anything they tell you. Since I often converse in a foreign language with them, this happens to me frequently 🙂

#weneedacure

Diabetes, Education, Health, T1D

Myth Busting

Myth

Fact

You get Diabetes Type 1 (T1D) from eating too much sugar Wrong! Insulin-producing cells in the pancreas, for one reason or another, are being destroyed. NONE of those reasons include eating too much sugar.
You can’t eat sugar if you are T1D A sweet incorrect! Sugar doesn’t need to be cut out completely from your diet if you are T1D, just eat it in moderation like anyone else. In fact – sugary drinks and dextrose tablets are the one thing that prevent T1Ds going into a hypoglycemic coma. T1Ds NEED sugar.
You are doomed to a life of ‘diabetic’ foods if you are T1D Nope! Thankfully research and the treatment of T1D has significantly advanced from the 80’s and 90’s. Not only are these products expensive, they apparently can give you the runs… So stick to the real stuff and count your carbs properly.
If you have T1D you can’t play sport. Sooooo badly wrong! Google ‘Famous sport stars with Diabetes Type 1’. You’ll discover a plethora of successful sporting giants. Sport is an extremely important part of living a healthy lifestyle for all of us so get out there and show the world what you can do. Nuff said.
You live a limited life with T1D Wrong again! There is nothing you can’t do just because you have T1D. OK, you can’t be an astronaut or a pilot, this is true but for the rest it all comes down to personal choice. How limited your life will be is up to you, not the disease.
Diabetics die young Dead wrong! Your life expectancy can be just fine so long as you diligently look after yourself, and avoid fast moving buses.
T1D is curable Sadly no. This isn’t actually a myth, just something lots of people aren’t aware of and any chance I get I will use it to remind us all that T1D sufferers will always be T1D until we find a cure. #weneedacure