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

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


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Diabetes Blog week – and Biomedical science exams!!

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Hi folks, it’s a busy time for me at the moment, I have completed my honours year research project aimed at investigating the inflammatory cellular infiltrates in osteoarthritis – using immunohistochemistry techniques.  This process developed my enthusiasm for research, and I learned lots of new lab skills – which will no doubt help me on my way to being a wonderful Diabetes researcher (one can dream).

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I have exams next week (insert image of a tiny violin here) –  Biomedical genetics and public health microbiology.  Therefore, I’ve not written a blog for a bit.  However, there has been lots of other interesting events happening.  First off, I wrote to my local MSP asking why the Medtronic 640g with smartlink technology doesn’t seem to be filtering it’s way to Scotland yet, and to discuss with him the benefits of continuous glucose monitoring (CGM) in managing type 1 diabetes.

The reply from him stated that according to SIGN guidelines, it is not recommended that a person with type 1 diabetes should use a CGM for routine management.  So, for now until there is further research on the benefits of using a CGM,  with insulin pump therapy, we must continue to prick my son’s finger >7 times a day. Here’s the thing I feel as his parent, – his fingers are ruined.  I say that with conviction! A better future for the testing of blood glucose must surely be on the horizon? This is an open call – from me! … However, as a Biomedical Science student, I have no money. Just to be clear on that!

Recently, we were lucky to have a mini trial of a CGM (6 days), on loan from our fantastic paediatric team at Crosshouse Hospital, in Ayrshire.  This allowed us to see what is happening with John’s glycaemic control, outwith the times that medtronic-cgmwe prick his fingers.  Shockingly, he suffered a serious hypo one morning which lasted over an hour – whilst he lay asleep in bed.  Importantly, whilst we all lay asleep in bed. He never woke to any alarms, or sensations that he was having a hypoglycaemic attack/episode.

This sets of major anxiety for parents of children with type 1 diabetes.  The “what if” scenario is one which my brain does not want to answer.   I understand there are major cost implications in offering a patient CGM.  The NICE guidelines on integrated pump and sensor technology (pump + CGM) discusses the benefits of using this technology – particularly if a patient is experiencing nocturnal hypoglycaemia! I could take a stab in the dark guess that this was a post-exercise hypo, as he has been snowboarding a lot lately, and playing football, and skateboarding, and ice skating, and… ok! you get the picture, he is a sporty young lad. Functioning pancreas or not – we live life with joy – and lot’s of bags full of equipment and sugar needless to say.

Type 1 gardenjohnjumpball-1Diabetes aside, it is also coeliac awareness week and we have been sharing a few stories on Facebook to raise awareness of this too! Apparently, there are over half a million people in the UK whom are living with coeliac disease, undiagnosed.  This raises concern with me, as I know all about the tissue damage and the effects of this if the disease goes untreated – so please click on the link above, and read their campaign! Our son’s diagnosis was pivotal in helping him feel good again, after months of painful cramps, diarrhoea, bloody bowel movements and weight loss – so don’t hang about folks.  Have a watch at Caroline Quentin’s recent piece shown on ITV’s This Morning to see how easy to procedure can be.

As far as study leave is going, that I will leave to the imagination.. I am typing a blog at the moment, which begs the question, how much revision have I achieved today?  #timemanagement.  The only other thing left to say is, I think I might go for a PhD or post-graduate study. Should I? Answers on a postcard.

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Studying Biomedical Science: Relate, Relativity and Relationships!

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This is a “broad spectrum” post today. It so happens that being a science student, we often ask the questions “why?” quite often.  As you may know from previous posts, my intense curiosity is driven by our patient experiences as a family of a child with Type 1 Diabetes.  However, recently I tried to imagine if my life would have been slightly simpler and less stressful had I not embarked on this career change.  What would I have done instead though?

I was travelling to and from my son’s school 3 times daily to administer insulin injections, I was learning about recombinant DNA techniques, I was calculating doses and trying to get blood glucose readings (of a growing child) to come between two very small goal posts – (4-7mmols to be precise). I started my blog to show people the reality of living with Type 1 Diabetes (and Coeliac disease) from my perspective, a mother’s perspective. Also to develop the relativity of Biomedical Science and the research with these conditions; to explain how my life changed by forming an understanding relationship between the two.

At times, embarking on this career has left me feeling absolutely exhausted – mentally and physically.  Learning complex, scientific material whilst holding onto enough perspective to remain a wonderfully, energetic and resourceful mother, wife and carer into the bargain, although my family would disagree on some of those issues.  However, along the way I’ve had serene light bulb moments. I realise this does sound a tad prosaic. But these moments have been pivotal to my continuation as a science student.  I’ve listed them below to break up the format more than anything:

In the style of John Cusack and Jack Black in the film High Fidelity – here are my Top 5 best ‘science’ moments (feel free to add your own playlist):

1 Visiting the Centre for Life / Science museum in Newcastle when the kids were little with them pointing to the University of Newcastle building and asking me ” mum, will they find a cure for Type 1 Diabetes?” I Remember feeling incredibly small that day – faced with nothing but huge mountains to climb in terms of learning.newcastle life

2 Reading the story of Dorothy Hodgkin and feeling positive that great women have been involved in Biomedical research for decades.  Her involvement in discovering the structure of insulin brings me nothing but awe inspired admiration.

3 Reading about Dr Melton and his team discovering an amazing medical breakthrough in terms of diabetes research – producing human insulin beta cells from stem cells at Harvard.

4 My family, their continued belief in me that I can pass my honours year (no weeping allowed here folks) although I don’t necessarily believe in myself until I see the grades along the way – so far it’s been averaging B1.  Although, I have suddenly started to feel a drive to raise that to an A!

5 I honestly feel that I can relate to others who have faced adversity, mortality issues and continue with courage, and at times, research can build this quality (said with a tinge of facetiousness). Understanding, on the whole, that you cannot control the results, you just have to roll with what you get! It mirrors the stage of acceptance I have with my son’s diagnosis.

My thoughts for the day – For anyone struggling through a tough year at uni, studying Biomedical Science my message is yes, I have had huge doubts of my ability along the way, and relations have been strained, but the good news is folks, I’m still here.  I have persevered in times of strain and despondency, pulled up my boots, and trundled on. I have also experienced times of elation (logging into online blackboard and seeing a higher grade than expected). As a Part-time student, several years on, I am still continuing with my degree – on top of extreme tiredness from testing blood sugars at 12am, and 3am.  The latter resulting in a wonderfully tight HbA1c of 6.9% for a pubescent boy, who is travelling on a difficult journey at times and needs a loving, guiding hand, so it’s all worth it.

The reason why I am persevering is, I care passionately about helping people; I care passionately about scientific research, and it’s place in society. I see my son not having the choice BUT to persevere – even on days whIMG_0178en his fingers hurt from the continued blood finger prick tests, or when he has a painful cannula insertion, or when he just feels that it is all too much to face.

To have the privilege of health to be able to study this and put this knowledge to use one day is something to feel greatly proud of.  I hope my message keeps you feeling motivated through your studies and you rise above the challenges along the way. We CAN do this folks!

I should finish with a cliffhanger – and this would be my number 6 on the list if it were allowed :

if anyone out there has or lives with someone who has Type 1 Diabetes, have you seen the news about the new Medtronic 640g pump? with low suspend technology? coming to the UK now :

Take care folks and if you know someone that needs help with dealing with Diabetes then please take advantage of the wonderful service offered by Diabetes Uk to talk to someone.


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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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TrialNet – Natural History Study of the Development of Type 1 Diabetes.

So I have registered to take part in a global research study which looks at the development of Type 1 Diabetes, and hopefully will lead to greater understanding of the autoimmunity relating to the condition.  More information can be found at the website www.diabetestrialnet.org.  This network of clinicians, researchers and peer groups has been dedicated to screening over 15,000 people worldwide by testing the blood of close family members for the presence of autoantibodies against pancreatic insulin producing islet cells.

Ethics

I recently attended the AGM of the IBMS in Scotland, and listened attentively at a specific presentation on how the human genome project has opened the gates to studying genomics, and how it may help patients by tailoring treatment methods dependent on the data produced.  I cannot say this field of biomedical science excites me, because that would be an understatement.  I sat listening to the talk with wide eyes and a somewhat, naive expression!  Being an honours year student does that to people.  The talk on genomics briefly addressed bioethics, and the data produced – would patients necessarily want to know if they were at risk?  Other aspects of the talk focused on current treatments that are of major health benefits to patients with life long conditions such as epilepsy. There is no question that Next Generation Sequencing is happening, and it will continue to happen in medicine, but the management of data and treatment plans is a huge undertaking for this new era of patient focused medicine.

So TrialNet was on my mind that day.  I sat thinking, what if my results come back positive?  Or what if my daughter’s result comes back positive more to the point.  I have friend’s who have more than one child with Type 1 Diabetes in the family, and to be honest that is a pretty scary thought for me.  However, the study not only focuses on perhaps “warning” patients of their increased risks, it will be used to shape and build future research and no doubt, add to a great repository of blood awaiting many a chemical application.  This was why I decided to go ahead. The consent forms were completed the day of the AGM, and sent away.  However, my husband and daughter’s forms are still awaiting the pen and ink.  Sadly, I cannot force them/bribe them/blackmail them to make the decision, but I do hope they will take part (c’mon guys).  From a research point of view, I hope they do – but as a mother I am a little more guarded.

I plan to keep reading more information on the TrialNet study, and await my results with an open mind.

One thing, I took from this recently was the comfort that so much research into the aetiology of Type 1 Diabetes and better treatments / cure is ongoing – such as the artificial pancreas study, the recent stem cell research by Dr Melton at Harvard (a fellow parent of a child with Type 1 Diabetes and esteemed scientist), and the studies directed at dual hormone pump therapy funded by JDRF, Medtronic and the Canadian Diabetes Association.

Long may it be funded extensively by the lovely research community!


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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!