My life in Science whilst raising a child with type 1 diabetes

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


Leave a comment

Diabetes Blog week – and Biomedical science exams!!

2015-01-12 09.04.02 2015-04-16 10.26.19 2015-04-25 10.54.23

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).

2015-04-28 11.52.57

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.

Advertisements


Studying Biomedical Science: Relate, Relativity and Relationships!

me ace

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.


Leave a comment

“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.


Leave a comment

Job Hunting!

These past two weeks I have been mostly job hunting! I decided after my summer work placement that I enjoyed learning new lab tecnhiques and skills and the time felt right to take myself out of University and honours year (now that I have my Bsc in Applied Bioscience) to concentrate on learning in industry. Sub note: I might go back and do postgraduate study at a later stage, but for now, I want to start applying my knowledge and gain more hands-on scientific experience.
IMG_1208

To get down to the nitty-gritty, I feel that sometimes the university labs can be overcrowded and with such short time slots for classes, the chance to even get touching some equipment or a quick glance through the crowds (there are 84 in my class) is at times, frustrating. Nevertheless, I did learn quite quickly to push my way through (previous years experience at Glasgow Barrowlands comes in handy) and make sure I asked questions on what was actually happening – most of the time! For example, a recent PCR assay meant a trip upstairs to the analytical labs, where the software and plate reader were installed. The whole class, trampled and squashed in this lab almost felt like some strange Edinburgh Festival street show, with a small clearing in the middle where the lecturer tried his best to explain threshold and Ct counts whilst pointing at some very distant graphs. My summer placement was crowd free and access to all lab equipment meant I could apply my knowledge without haste – giving me some time to take account of all the gaps in my knowledge and how best I could transfer my skills in employment.

So I’ve updated my LinkedIn profile, polished my CV and read through quite a few interesting posts about career change and being a “mature” student – all of which have affirmed my belief that getting myself out there is the best move at the moment – before I get even more “mature”.

Then there’s the vast sea of laboratory positions to siphon through each day – each with differing defitions of the term “laboratory technician”, “research assistant” or “medical laboratory assistant”… some posts require only an HND and yet others (with the same job title) look for PhD/Masters qualificatons. It’s all very similar to the fact that the scientific community have several terms leading to the same meaning. I once heard a senior Biomedical Scientist describe this phenomenon as intimidation. I prefer to look upon the whole thing as being a tad quirky and geeky – it keeps my sense of humour from abandoning me during such a period of life changing decison making!

Wish me good luck in the job hunt, hopefully I will get closer to my dream of being involved with Type 1 Diabetes research. You never know, one day we could be working together?


Leave a comment

IBMS, CPC, HCPC, Portfolio, Hons – how many more abbrev. Can my blog take?

JohnMilport-1Diddle Diddle dumpling, my son John!

Hi everyone, I’m currently on a work placement over the summer working with IBHER (Institute of Biomedical Health and Environmental Research) within University of the West of Scotland laboratories.  This entails me volunteering basically, to gain much needed experience.  For which I am very grateful, mainly because every job I see advertised states “2 years post qualification experience”. Have you seen this?  I understand completely as a mature student, and one whom has taken a career change, that you simply cannot allow a new graduate to enter labs and start playing ‘The scientist’, but within my degree there was limited accessibility to placements.  Hence, when the sun is shining, and you kids are all playing with hoses and paddling pools whilst I am in the labs!  Violins please – at the ready.

I write this blog with some dismay also, because as you may know, I wanted to study Biomedical Science to allow me to gain access to labs involved with Diabetes Research – possibly to gain a job as a research assitant/technician.  However, my summer placement involves working with murine and human models of OA (osteoarthritis) and characterisation of the cellular infiltates in synovium.  This involves IHC techniques, and microtomy.  Both of which, I am enjoying learning but I still have my heart and passion set on Diabetes research. Does this sound petulant?  I hope not, because I sincerely am grateful for this opportunity but I just fear it may create some unwanted distance from my goals.  In one hand, we are encouraged to think of our goals – or aspirations, but on the otherhand we need to balance reality and what fits in with our own personal circumstances.  The balance which we all live with in society.

Also, sometimes I have doubts about completing honours year due to the continued need for post qualification certification and the fact that nowhere has the time to allow this to happen in the NHS at the moment.  I know of two friends who studied Bsc Hons in Biomedical Science and now work as Band 3 lab assistants – a job which is advertised as “no formal qualifications are necessary”.  So, what to do? honours year or not? that is the debate.  Meanwhile, my family are enjoying summer on our limited budget – and beans are a staple diet right? HashtagNotInItForTheMoney

On a more personal note, I have been volunteering as team leader for Diabetes Uk Big Collection Weekend again and helped to raise over £12M for the charity with all the wonderful volunteers up and down the country in Tesco stores.  I am forever grateful to my friends for giving up their time to come and help my team, and I promise to continue my support for both JDRF and Diabetes Uk no matter what.   John and some friends managed to show the Tesco staff their Insulin pumps, and got some amazing support from members of the public who were not aware of how serious Type 1 diabetes actually is to live with.

IMG_3088