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

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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“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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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.