Science, Music & type 1 diabetes – my life as his mum

Biomedical Science, Type 1 Diabetes, Coeliac Disease and other findings


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Let’s talk – Type 1 and music

My son John has had type 1 diabetes since age 4  – he’s now 15.

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I noticed recently on the JDRF twitter feed about #NationalConversationWeek. This got me thinking about Stephen Hawking’s voice in the Pink Floyd song – Keep talking. The hope that he brought to millions of not only defying all odds, against diagnosis and prognosis, but of his positive visions for the universe and humanity. In this quote, I take personal hope that we need to “keep talking” (about a cure for type 1 diabetes):

If human life were long enough to find the ultimate theory, everything would have been solved by previous generations…Stephen Hawking. 

 

Banting & MacLeod

Let’s talk about this – they helped to treat dying children with insulin, previously harvested from animal pancreatic supplies. These two prominent, hard working scientists worked endlessly on their mission to save lives. They were true pioneers.  If  they had not been so dedicated and focused, these children would have died.

Fast forward nearly 100 years and this insulin now saves billions of lives.  Their breakthrough with this life saving drug was, none more than a miracle, in my opinion.

Does it make you think why then? Why did they find those answers at that point in time? And what are the new age revelations for our generation and that of our children?

As a flipside, it’s not all plain sailing –  what about the side effects of insulin treatment  – what about the realization now that intensive insulin replacement treatment can cause severe hypo’s at any time, bringing severe risk to our lives and that of our children.  What about the toxicity of insulin?  Bringing me to The Verve – The drugs don’t work.  I understand insulin works, in that it can lower blood glucose – rather than regulate it.

How to help make life better/ easier?  Radiohead – Fitter/Happier

The impact of technology now seems to be highly fashionable in the quest for monitoring and preventing side effects of insulin replacement.  From glucose monitors to phone apps and constant alarms and interaction with data. Turning some of us parents into mini data scientists and predictive glucose trend setters – just look at the growing population of NightScout users and developers – using Open access to view glucose trends in the cloud, and view data on wearable devices – to constantly interact with dose adjustment of this drug.  I can hardly avoid mentioning Red Hot Chilli Peppers –  Blood Sugar sex Magik here can I?

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Research

I recently submitted my first draft of my Masters thesis on the topic of technology and type 1 diabetes, and I hope to continue my path of being a parent of child with type 1 and a researcher, with enough sleep and sanity and insight to be able to help those who need it most.  But a lot of the time, I push against feelings of tiredness, helplessness at not being able to fix my child and forging ahead with a sense of hope and strength. I don’t know where it comes from to be honest because sometimes this shit gets so difficult.  In quiet moments, in the car, or at the beach this song talks to me – First Aid Kit – Shattered & Hollow

Something inside of me this morning feels like a wounded animal, having opened my son’s bedroom door at 7am to find a trail of empty cans of full sugar coke cans on his floor, and him unable to waken from tiredness  – having treated a hypo in the wee hours. Why didn’t he waken me? Is he too tired for school this morning?  Should I let him sleep a bit longer – knowing fine well that in a year or two he’ll have left school and will be expected to drag himself out of bed, shattered and feeling like crap – to get to work or college or university!  I should have been there for him last night, I should have woke up and treated his hypo, like I have for the most hypo’s in the last 11 years.  Insert here – Fleet Foxes – If you need to, Keep time on me & Opeth – Burden. Two songs for the price of one here folks! 

The mind plays wonderful tricks on us to keep us in fear of these hypo’s , these times when our growing, teenage children will venture into the world without us (that reminds me, should I order him some Medical ID bracelet, that I know he won’t wear).

Sadly, after such a long time dealing with my son’s condition, I have created habitual thoughts of fear.  Fear of him feeling the burden now that I softly hand this over, bit by bit.  Fear that people will judge him – what if he’s on a train one day, having a hypo and people think he’s drunk.  Will they help him?  Fear of him being sacked from a job because he can’t deal with the tiredness.  Should I bring in a classic oldie here – Blue Oyster Cult – Don’t fear the reaper!

In order to get society to understand the relentlessness and tiring effect of managing type 1 and glucose levels everyday, it seems that we need continued press coverage to rise about the loud voice of mythology – “Diabetes and obesity on the rise” etc – this voice that has filled with nation with a belief that our children with type 1 diabetes had any hand to play in their diagnosis.  It’s widely known in the diabetes community that type 1 diabetes is autoimmune, and cannot be prevented – but let’s talk about it on the street.  Let’s see how many people know the difference?

I took my son to a chiropractor recently who felt she could manipulate his spine to help with his headaches, and back pain. When I explained he was type 1 – she said “That’s ok, isn’t it the other one that’s worse anyway?”  My heart sank.

When I called a local boxing club for my son to join, the man said “his diabetes won’t be affected madam, he’ll be fine.  He’ll be punching a lot for the first few weeks so he’ll be just fine”… Again, that sinking feeling.

If only we didn’t need other people to understand, but we do.  We have to have our children integrated into society. A society which doesn’t really know how to help or understand what the heck is going on. I believe a lot of this is to do with the damage done by the media over such a long period of time.  Presenters who never distinguish between type 1 “diabetes and type 2 “diabetes” when all they ever use in their language is the word “diabetes”. A blanket expression.  For this reason, and many others associated with the plethora of injections we give our children (and the fact that he is also type 1) I nominated The needle and the damage done – Neil Young as my next song.

As I finish this little ditty, I reach out to all the other parents/caregivers who wake in the middle of the night, or who stand at the sides waiting with sugar (candy) in hand – just in case there’s a big, bad, hypo awaiting.  I literally cannot listen to this song anymore without crumbling.

Candy – Paolo Nutini  

“Oh, darling I’ll kiss your eyes
And lay you down on your rug
Just give me some candy
After my heart”

Do you have a song or a memory like this? Share with me. I look forward to hearing from other parents who cry at songs, who have quiet moments of contemplation with songs, and who secretly enjoy their child’s fascination with rap (that’s me).

me

To my son John “I let my tape rock , ’til my tape popped”. 

 

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It’s the final countdown

Did you sing it? …Air guitar!

Tonight, I wanted to jot down some feelings about my final exam coming up, as part of my BSc (Hons) Biomedical Science degree at the wonderful University of the West of Scotland in Paisley. Has anyone ever felt the impending crisis of confidence that comes with this finality? tripping up at the last post? falling at the last hurdle ? and all other steeplechase adages. Can I say? This is partly me. The other part of me wants to be the person who tries their hardest right til the end, like “when the going gets tough..” You may be thinking enough of the proverbs, if so, I don’t blame you.

It’s the pressure I’m under you see. Right at the end of this degree I have the whole plethora of reasons which I’ve built up over the years ,to keep on going. The memories of the stresses and strains it has put on me and my family. The lack of sleep due to many reasons and the blind faith that I would keep pushing myself to get there.  I’m almost at “There” now, or am I?

As a part-time student, I have met so many wonderful people who have inspired me. I’ve met a lot of friends who share my passion for being a science girl/nerd/geek/weirdo/guru. On the whole,  I can use the word “privileged” for how I feel about this change. Anyone, who undergoes a career change may feel trepidation at the prospect, but I can confirm the change has been good for me – so go for it! If it’s something you need to do in life, I hope you get the chance to.

Biomedical Science and this career change is always a moving target. One which never really came into focus before now. You see it’s not until the end of honours year that you start to really take things seriously, how could you before? you didn’t know you would get this far, right?  I mainly speak for myself here.

PEANUTS!

You begin to meet people, who you may actually be involved with throughout your career.  For example, recently, we’ve had the pleasure of hearing how it is in industry with a series of talks from scientists working in labs in Scotland.  They have discussed the focus of their specialisms in laboratory diagnostics or research – highlighting the impact they have on lives at the other end, perhaps vulnerable and waiting on results.  Their responsibilities at hand of keeping systems in flow, and performing accurately to meet demands of ongoing developments and tests in Biomedical science.  A recent lecture from a clinical immunologist on the range of allergy testing that can be carried out nowadays inspired me.  One talk discussed the ways of testing for allergies including skin prick tests, measuring wheals as they responded to localised allergens under the skin, and also the movement towards molecular genetics such as the awareness of the ‘Ara’ gene’s in peanuts and their related allergens that can be detected with antibody testing. It almost ranked #1 in lectures, however this spot is reserved for Dr Anne Crilly’s lecture on autoimmunity. Dr Crilly was my research project supervisor, so I do have vested interest in being a fan!  I feel inspired by great minds who tackle very complex scientific challenges to improve people’s lives, and I hope student’s voice their appreciation of this which I know a few of my peers do.

Clinical immunology is where I aim to be involved, but as I learn about the scientific community and the specialisms out there, I realise, if I achieve my BSc (Hons) that I’ll be a beginner again and rightly so. For this reason, saying that  I’m almost “There” now seems a very sinuous comment to make in this industry.

Diabetes Research

In the days gone by, whence I was young and naive (not really, I was 32 when I started this degree) I thought I would qualify and go straight into diabetes research. As a mother of a child with type 1 diabetes, I was sure this was all the gumption I needed. <insert evil laugh here>.

I know differently now. Those little acronyms, of which I have learned so many, are now staring me brightly between the eyes most days. PhD being the one of most illumination. However, as mentioned (quite a few times now) on this blog, I do have a family. I do have growing teenage troops and they do need parenting as much as little babies do.  Side note: If you have teens, you will know what I mean.

Inevitably, I will try to make a confident decision and move forward with my career, but I wouldn’t have been in this position if it wasn’t for my quest to find out why my son was diagnosed with autoimmune conditions. Each time things got difficult I told myself “if someone else can do it, I can too”.  This quote is dedicated to my children.

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John, my snowboarding genius!

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Katie, my young aspiring musician, and teacher!

To Katie & John:

If you read this (meaning you may have to actually use your mobile phones, and now my argument for this seems ineffective) – Thank you for putting up with me, and having faith in me so far. In this day, when you live with your mobile phones joined to your hands and google anything you want to know, I want to highlight that being part of studying for a degree is great but you’re in it for the long haul and you have to be patient with yourself.  Good things come to those who wait.

 


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“Techies” are moving things forward, but what about good old fashioned family values?

This morning I came across a common discussion point for parents of children whom live with Type 1 Diabetes. That of the pre-teen or teenager and the human condition known as “invincibility”.  I believe it can manifest at around the age of 12 in boys, and younger in girls.  It set me thinking about, not the data sets or graphs, or numbers which we constantly live with (being constant finger prickers that we are) but of the gentler side of approaching feelings and emotions.  I know from my standpoint I strongly desire my son to always be pricking his finger (at least 10 times a day please John!) to gain at least part of the days picture of his glycaemic control – but what does he feel/think about this?  I know that he sometimes subconsciously gets the finger pricker out, loads the strip into the device and then makes up a song about the number “5.2, eyes are blue you are sweet but I am too”  – that’s one of his favorites.  However, at times I have also seen the dark shadow under his eyes, the look of “not again!” or “I’m sick of this” or “mum, stop nagging I’ll do it when I am ready”.

So, although technology is advancing with insulin pumps, increased number of daily finger prick tests (incl night checks) artificial pancreas closed loop trials, and continuous glucose monitoring systems such as the Abbot Freestyle Libre system, we also need to ensure patient compliance is met with as much continued support – support that is going to deal with issues as they appear and sometimes, in some cases, as you forecast them.

For example, I see mood swings in my daughter – aged 16 (Non-Diabetic) and I know to run and take shelter at times, but what do you do when this mood swing involves a teen who may or may not wish to face controlling their diabetes?  Have you, over the years, allowed for a trustworthy open relationship to build where your child will feel accepted, or have you unconsciously shown judgement on them “why are your blood sugars so high, have you been eating sweets in your bedroom again?”  Ashamed to say, that last one was me – or maybe it was his dad…  Yes, on recollection it was him, not me!  There have been times when I have been a bit of both and have had to “wing it” just as much as other parents, but I do hope that as he approaches teen years – and technology advances, that services will allow for greater support for both him and me.  I am his care giver at the end of the day and so much responsibility lies with that.

Being proactive as a parent of a child who wears an insulin pump is always on the cards. For example, he brings home a letter from school to say they are having a fun inflatable’s day. Already my brain is preparing for the calculations to lower basal rates 2hrs pre-exercise and a quiet phone call to the school to plead with them for him to store said pump in a safe place (his equipment costs thousands you know) whilst he does double front flips up and down the length of the gym hall.  But proactive support from HCP can be helpful too, to foster an inclusive approach to growing up with Type 1.  As an example, if you have 50 patients almost reaching age 13, why not invite them for an evening chat session with other parents and perhaps the dietician. An informal evening, away from clinic where the kids can maybe hear from a mentor?  And maybe lock the parents away in a safe, padded room whilst all the teens moan about how awful we are as parents.  That kinda thing? And I realise our current healthcare system is already ‘run of it’s feet’, and HCP do an amazing job – and that this would yet another task, to add to them – but local support groups can help with this, and getting communities to volunteer their help also adds to the numbers of helpers – willing to tackle these issues together.

All these “soft skills” may eventually help shape the teenage brain, and try to soften the edge of the harsh, self-critical, teen mood swings to come.  I realise this may sound a tad indulgent, I mean if kids don’t look after themselves there are threats given to take the pumps away from consultants etc, but if it can be prevented and the complete melt down or “head in sand” approach can be tackled, it may just be a small miracle.  I speak with limited evidence of this, as it is yet to come for me and I have heard many a threatening tone ” just wait til the teenage years, hold onto your hat” etc, and I know it is fast approaching so I write all this preemptively as a parent who is sitting in the wings with a very big, tight hat on indeed.  I realise a person has to want to help themselves, but come on, as a teen I remember having a strop if a new zit appeared before school photo day – it’s hardly on the same scale as what my son will have to face.  Short from turning myself into a dragon lady and adopting a slightly browbeating personality – I fear I may start looking for a small gite downwind of the cote des Alpes.


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Type 1 diabetes – Ignorance is bliss?

This is a short one today! Basically because I feel terrified.  I know this seems negative, but life sometimes is folks.

A facebook friend’s child who has Type 1 diabetes has recently suffered seizures when hypoglycaemic.  This is not when Blood glucose was extremely low – but just sitting around the 4mmols/L mark – which, to some people,  is considered not really low unless it drops well below 4!  I don’t really know what to do about how I feel hearing this. Obviously I feel sad for the family going through this but on the other hand it could be my family.  My brain is trying to rationalise this, trying to cope with a situation that hasn’t happened to us, but could.  After reading the in-depth details of how quickly and, how it physically happened, I feel like I could start shaking and not stop this morning.  My son’s school do not allow Glucagon to be kept on the premises, nor does the NHS sanction that this must happen – so if this happens outwith our home, what then?  For the first two years of study in Biomedical Science, whenever my mobile phone rang I literally used to be on the verge of tears, until I found that it was wearing me down and almost had me frightened to not stray any more than a mile away from my son’s primary school.

I always thought a seizure would happen if blood glucose was dangerously low – but our son has been 1.2mmols/L before and not experienced a seizure. Fair enough he was extremely cognitively compromised at the time, but why does seizure happen to some and not to others?  Is this well understood enough from a biochemistry point of view?  (On I go to search some papers – when in fact, I should be working on my literature review for my honours project on osteoarthritis).

Wish I could start running and never stop this morning, this thing scares the hell out of me, and it feels perfectly natural to share this with the world because people need to know why I am a carer, why I study Biomedical science as a part-time student and why this condition is very different from Type 2 diabetes which is only treated with diet and pills.

I can say hand on heart that any parent of a child with Type 1 Diabetes, never is prepared for this.  You have to remember, that from an hourly/daily point of view, we are monitoring blood glucose levels and treating a hypo as necessary with some lucozade or dextro tablets, or any other form of quick acting glucose – but never do we want to get the glucagon out of the fridge.  Having heard from this friend on facebook – the worse scenario would be to not have the glucagon at hand and feeling utterly helpless until the rapid response team arrives.

As time progresses, this condition may alter the patient’s awareness of hypoglycaemia, or reduce the likelihood of having uncomplicated hypoglycaemia (being no seizure or coma involved) so I feel now that I should try to “prime” myself, ready for action should it happen!  (Goodness knows what my adrenal glands are like).

I feel it’s important to keep raising awareness and let the world know that morbidity issues with this condition is a serious global threat and one which my family want to see cured. Everyday I look at my boy with such pride and such sadness, that I don’t let show.  I feel he has more responsibility on his shoulders and is not fully aware of what this conditon could be doing to him on the inside.

For this reason my family and I are walking to raise funds for JDRF on Sunday 28th September in Central Scotland, alongside other families and friends.  Please take the time to read my plea – even if it’s just to educate yourselves and perhaps donate?

http://www.justgiving.com/d_cochrane


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Type 1 Diabetes, complications and cost effective treatment models in paediatrics

 

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Recently, I seen a shiny graphic on IFLscience’s twitter page (@IFLScience) depicting the significant amounts of money raised for certain disease/conditions compared to those which have highest mortality rates (U.S. data). Published in Vox, by health author Julia Belluz, it highlighted that the amount donated to breast cancer research was unbalanced to the amount of deaths caused by this form of cancer. The data further showed, most deaths calculated from the CDC (Centre for Disease Control and prevention) data were due to heart disease. This article was written in response to the latest ice bucket challenges for ALS, the graphic can be found here.

Almost immediately, I zoned in on the green dots representing diabetes.  If you look at the image, you will see the comparative donations to deaths caused by diabetes. This image, on the whole is pictorial and not really relevant to what goes on in the UK – for that I fear the amount raised for Diabetes research would be even smaller in comparison to the deaths caused. However, let’s look at complications. One of which, CVD/ heart disease is a major killer in the UK.  The British Heart Foundation say is the second biggest killer in the uk!

Costs associated with Education

With this in mind, I started to try and research more information on facts and figures relating to UK diabetes, it’s complications, management of type 1 diabetes and more personal to me – relating to children.  I found a Diabetes Uk document which addresses issues surround type 1 and type 2 diabetes in Scotland (found here) and highlights the fact that children with Type 1 diabetes in Scotland need support, personalised care and infrastructure in place during educational environments to support their health needs.  The incidence in younger children being diagnosed with Type 1 diabetes in Scotland is also on the rise, and with one of the highest prevalence rates in the world I would say this issue needs addressing, with urgency, by groups who are willing to tackle the underlying questions surrounding the cause of this autoimmune condition and it’s treatment and/or cure.   In education, the cost of caring for a child sometimes is put in place with additional support funding – but not always.  Staffing levels can be  poorly managed and the care of the child at risk – as was our case (and why I had to homeschool my son for a short period of time before he started secondary school recently).  Government and local authortities must be encouraged and advised by leading health authorities on the complexity and importance of supporting a child at school with Type 1 Diabetes.  Children <5yrs starting school and learning to cope with this condition have an adult sized worry on their very little shoulders and setting aside the politics and costs of this, they need positive, nurturing and caring environments to help them feel they can take this on and cope with the daily challenges.  Surely you would not be happy to inject yourself with a dose of insulin, with fear it could kill you when you don’t understand what you’re doing?  Any yet, some environments are placing a great emphasis on children to be as independent as possible.  This gap in knowledge in society, of the severity of insulin replacement, and it’s potential to cause severe hypoglycaemia should be at the root of all educational policy and the needs of children with this life threatening disability.

With paediatric care in mind, I can say from my own personal experience of caring for a child with Type 1 diabetes, and aiming for tight glycaemic control (to ward of the evil ‘diabeasties’) is like a game of pin the tail on the donkey at times.  Constant measurement of food, dose adjustments, finger prick testing, site rotations, faulty insulin (which doesn’t change colour when denatured –  this would be a great idea for Novo Nordisk wouldn’t it folks?) counteracting extreme exercise, battling with growth hormone, adjusting doses due to possible gluten contamination (if your child also has coeliac disease like mine does) calculation of the glycaemic index and fat content Vs insulin delivery (dual wave/combo) ratio’s – the list goes on.  It’s a wonder I don’t receive an honorary degree in mathematics!

What about the cost of current treatment methods?

So the cost effectiveness for pump therapy for us is one of a more qualitative result.  On multiple daily injections (MDI) our son used to inject >7 times a day with insulin.  Relying on a manual finger prick to give a small snapshot of what his blood glucose levels were doing – at that time only!  At times, he used to refuse to eat just to save another injection, at other times he used to sneak food upstairs and then cry when he felt consumed with guilt that he didn’t tell us and his glucose levels would be through the roof!  His legs and arms were bruised, and swimming with a child covered in bruises was difficult at times.  The social anxiety grew as he got older, injecting in front of friends or the constant ” my gran has diabetes, she doesn’t need to have injections” from friends used to send him into a furious rage not unlike the incredible Hulk.  His HbA1c fluctuated between 7.9 and 8.4% and despite daily calculations and management, it seemed a dauntless task to get no reward.  On starting insulin pump therapy, he now has an HbA1c of 7.1% and a better future ahead.  We still do need to rely on daily finger prick tests (10-12x) to get a clear idea of how to progress with each bolus or correction, as our local health board do not fund for CGM (continuous glucose monitors) at this time.

pump therapy

A recent study of adults with Type 1 Diabetes in Australia, found the CGM + CSII insulin system to be cost effective in patients with severe hypoglycaemic unawareness, but why does it need to get the stage that someone is needing ambulatory care before they are considered for this technology? In Scotland, there are very few children with funded CGM technology and those who do use the linked technology to communicate with the pump of an impending hypoglycaemic attack tend to self fund – costing over £3,000 annually.  JDRF discuss the CGM system and running costs here.  These patients and families often have an HbA1c <7%  which speaks for itself. In terms of prevention of complications further in life, this should be standard care for paediatric patients in my view.  Balancing the costs of hospital admissions, treatment for complications related to Type 1 Diabetes surely would outweigh the model for increased access to CGM technology?   pump and cgm

Like anything, the further you read and research, you find there are people in the world who genuinely want to see this cured from collaborations to research groups globally.  Calls to collaborate with some of the worlds biggest pharmaceutical companies may bring about a fascination that returns will be high  (if a project can deliver better therapies) but also, from a technological point of view, if great minds can come together to produce the likes of the minimed duo from Medtronic, then I feel very hopeful that sharing of data and research can highlight the incumbent path for a cure.

So for all those inundated with paperwork, deadlines, project milestones and KPI’s – remember there are people fundraising for you, people supporting you and hope that all these trials will lead to greatness and hopefully a Nobel Prize?

 


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And so it begins…

So, remember how I said I was leaving Uni and looking for work. Well that’s changed, onto Plan B. I feel happier that I can go back for my honours year as a part-time student due to the settling in of a certain secondary school boy with type 1 diabetes. Last week we had blood glucose ranging from 2.6mmols/L to 26.7 mmols/L (the latter due to a missed bolus of a huge bowl of cereal – that reminds me we need milk). The former hypoglycaemic attack brough about my gym class, and the fact he didn’t take his insulin pump off the whole duration. If Medtronic or Bayer Diabetes can come up with a tool to help pre-teenagers/teens to remember these small issues, then my life may be less freful. On the day that I had said I would collect him from school in the car, he forgot and walked him with his friends. You can imagine, I sat in the school car park until the sea of pupils dissipated and no one was around. Half and half feeling like a prat for mbeing so over protective but still demure enough to know that it’s because I love him – I drove home with my tail between my legs. Only to find him at the front door, sitting on the step drinking lucozade. If I had shares in the is glucose drink, I’d be rich. The main point is, yes he had a hypo when I wasn’t with him, but he was aware of it and treated it sitting there like a little orphan on the doorstep. I digress, the point I am trying to make about University life was, I thought to juggle all these responsibilites that attending university as a full-time student would eventually bring around my demise. Cue my phonecall to my supervisor, in desperado, griping about the job market and what was I going to do with a basic degree!

All drama over with, I am now happy to be continuing with my honours year project whilst still logging in to read my job alerts every now and again. Only difference being the job alerts are now for part-time work. But all that is by the wayside, when I read about Dorothy Hodgkin recently I realised that she is another of female heroines. It’s good to have positive role models in science, and I’m all the more delighted that she found the structure of insulin through her amazing efforts with x-ray chrystallography!


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Cannula Can of worms?

Ok, maybe worms is not the best expression here, but often worries build up and get squashed around our, already slightly anxious minds like little worms.  Looking back, I think this is fair to say of the way my son was dealing with starting insulin pump therapy.  He was already dealing well with seven pen injections per day, and had no fear of needles.  Well why bother with the pump you might ask?  Easy answer is, even though I thought I’d became familiar with the daily task of injecting my son, at some level, it still was unpleasant to have to inject my child every time he wanted to eat.  Despite daily carb counting and keeping him fit, he still wasn’t having great HbA1c results – mainly due to his coeliac diagnosis in my opinion!

cannulaDuring this period, I was studying Medical Microbiology at University and the thoughts of Staphylococcus aureus infections started to come to the table.  Each time, we done a cannula site change, my mind was filled with the virulence factors of such, skin commensal bacteria, and how it could pose as a threat to my child every time we introduced this cannula.  I have been studying Biomedical Science, part-time for seven years now, and in that time I had to take one day off.  Why?  That would be a failed cannula at 2am the previous morning, with blood sugar levels at 24.1 mmols   So here we have, a practical, real life example of how bacteria and immune reactions cause real life threatening worries.  In fact, the laboratory class that I had to miss was a microbiology experiment exploring a mock site infection investigation – I joke not! again, I use the word Irony in it’s fullest meaning.

 

Clinical Chemistry and Cellular Pathology was also the other module I was studying at this time.  I found myself very drawn to this subject and got to see how all of these little molecules and chemicals cause diseased states and the implications thereafter for many.  It reawakened my zest for learning all I can about Diabetes, and in particular Type 1 diabetes of Insulin Dependant Diabetes Mellitus,  a term which is still used in educational materials.  Many parts of a jigsaw are interlacing as I move onwards with my degree.  Parts of the picture, coming clearer as to the why? and what? but not the ‘How’ unfortunately!  There still seems to be a sea of information relating to the involvement of Coxsakie Virus strains as shown here. And for now, I will keep on reading more on this hypothesis!

Now for some anecdotes on insulin pumps.

We turned up to training sessions with our son and he sat there bored for hours, probably dreaming up ways to escape the room without being seen.  At times, I would elbow him and he would jolt up from his stupor and answer a few questions.  Many a frought discussions took place in the car on the way home.  Thinking, is this for him or me? Does he really understand all of this?  So many questions and so much information to take on board as to the mechanisms of how the pump is programmed and how it will all fit into his daily life.   We talked to him at home about this new insulin regime, highlighting how “amazing” the technology is, how it will “transform” his life for the better, how it will make his diabetes “easier” to cope with and then you bring out the cannula!  My son was aged 9 when he first tried the pump. I say when he first tried it …

Picture this! (not the Blondie song) two very anxious parents approaching an, already screaming child, with a needle that appears to the child to be 10 feet long, for a trial of one week.  Now tell that child that this will be better for them, and expect them to listen.  Not easy.  Parents – 0, child – 1.  A trying, frustrating and worrying time for all and probably best to just stick with the seven injections a day for now.

I read of, and hear about children, from babies to teens experiencing needle phobia/cannulation phobia and I guess I just wanted to address this.  Because our children were not given a choice and although they need injections daily, we mustn’t dismiss that they will ever get used to injecting all day long just because they want to eat. When John had his biopsy for coeliac disease, it took two doctors, one nurse and one mum to hold him down for his venous cannula for the drip during surgery.  This experience was comforted by the junior doctor telling me “just because he’s diabetic, it doesn’t mean he likes needles!” For the first time since he was diagnosed it made me realise this was so very, very true!

Roll on a year and for some reason, send that same child to a Diabetes Uk Children’s holiday, miles away in the beautiful rolling Cairngorm mountain range with a bunch of very well qualified health professionals, and Kapoom! He comes home all smiles and cannula firmly in place (although not linked to any insulin pump granted).  Fast forward 2 years, and here we are with our amazing little Medtronic Insulin Pump.  Conversations go a bit like: “have you put on a temporary basal?” whilst shouting after him as he prepares to go the skate park!  “What was your correction?” when the pump works out that his blood glucose is a little too high and needs a little extra insulin to get him within range. Note: this would have been injection number 8 on pen injections!  “Did you hear your missed bolus alarm?”  A function which reminds him, that he has just ate an elephant sized bowl of cereal for breakfast, and yes, I know you’re going to be late for school – but what about that alarm? and “should we put on a 120% basal to cope with the spike?” due to said cereal being gluten free – but full of sugar (a paradox in itself to be explored later on).

John's cool new pump, delivering insulin via a cannulaTo finish on a positive note, his life is transformed, he can eat without injecting everytime, he does have improved HbA1c (7.1 % or 54mmol.mol as opposed to his previous averages >8.4%), we can manage sickness and ketones quicker during a bug – as we now have a blood ketone meter instead of measuring ketones in urine which are not as accurate and perhaps real-time as blood measurements.  We can also manipulate basal rates on an hourly basis, which gives us as parents, the tools to try and prevent full day long hyperglycaemia related to growth/excitement/dietary reasons.  We’ve had to learn ways to cope with how different glycaemic index foods slow the absorption of the insulin (dare I mention the the P word? – answers on a postcard if you know what I am referring to here), we’ve had to try and think like a pancreas basically and at all times, to always encourage him to take on every experience with gumption! what a word.