Medical treatment
Medical treatment of CHI aims to maintain your child’s blood glucose level at a stable range between 3.5mmol/litre to 10mmol/litre.
For many children, this can usually be managed by regular high-carbohydrate feeds alongside medicines to reduce insulin release in the pancreas. There are several drugs that all work on different pathways and aim to do different things, and usually, each one will be tried in turn until the one that is effective for your child is found.
Those drugs used to reduce the production or release of insulin include: diazoxide, chlorothiazide, nifedipine (although rarely used in the UK as it is considered by many as less effective as the other available medications), glucagon and octreotide.
Surgical Treatment
Surgery is considered secondary to medical treatment and is often reserved for children for whom drug treatment has been ineffective. Surgery is usually an option for children with focal disease who have identified areas of the pancreas with defective beta cells (usually following a PET scan) and can often offer a cure for CHI. More extensive surgery to remove all or most of the pancreas is only considered an option for those with diffuse disease when medical intervention has failed - but it should be noted that this carries an increased risk of longer-term effects such as diabetes or pancreatic insufficiency, and is not usually seen as curative.
Measuring Blood Glucose
We are living in the age of technology and if there is ever a time to have a condition that needed technology then this is the era. Things now are unrecognisable compared to just a decade ago.
There are lots of different ways to measure blood glucose on the market and this is just a guide to a few pieces of technology that we have in the UK - It is not intended as a recommendation, nor to be exhaustive.
Glucometers
There are many different blood glucose (BG) meters on the market. Everyone loves their own meter and if they don’t they can change to a new one and ask their GP to change the repeat prescription to the new test strips. Normally the easiest way to do that is to contact the company of the meter you want and ask for one.
Accuracy of meters :
In 2013 new much tighter accuracy standards were agreed upon, requiring that 95% of blood glucose results should reach the following standards and that all companies who manufacture blood glucose meters must ensure that their meters meet these new 2013 accuracy standards by the end of 2016 :
Within ± 0.83 mmol/L of laboratory results at concentrations of under 5.6 mmol/L
Within ± 20% of laboratory results at concentrations of 5.6 mmol/L (100 mg/dL) or more
This is a good article to look at regarding meters and accuracy;
Blood Glucose Test Strip (BGTS) evaluation protocol and results May 2015 by NHS Greater Manchester Medicines Management Group: Read Article
This is also a good write-up regarding accuracy and also has a list of meters that conform to the above accuracies: Read Article
A lot of these meters boast to have within 10 or 15% accuracy, and some claim to use significantly smaller blood spots, or deliver faster results - If you are dissatisfied with your current meter, consider trialing some new meters if you can.
Continuous Glucose Monitoring (CGM)
These are devices that are manually inserted into the skin, subcutaneously and measure the interstitial fluid below the skin (This is a surrogate for blood sugar when a mathematical conversion is applied by the CGM's on-board computer). There is approximately a 15-minute delay from reading interstitial fluid vs capillary blood but some of these devices attempt to bridge this delay with onboard predictive mathematics. This technology, although not new, is still considered quite groundbreaking, and getting local CCG funding for these can be quite hard in the UK even for children - although it has been and can be done, it’s a bit of a postcode lottery.
Some machines are true CGMs, and some are considered "Flash" monitors, as they don't continually monitor, despite continually measuring. They can all be privately funded as well as NHS funded (in some cases). They are very easy to insert, and basically all do the same thing: They test the fluid roughly every 5 minutes and either wirelessly transmit the readings to a handheld monitor, or store the readings to be transferred on demand. The units and their associated monitors are small and light, and often interchangeable with your mobile phone. Some devices allow you to remotely monitor the device when connected to a phone - Useful for example if you need to monitor the BGM readings of your children whilst they are at school.
As these go beyond a single point-in-time reading obtained from the traditional BG monitor, they are capable of informing and predicting events and can be very useful for gaining better insight into the impact of food, rest, or activity for example. They have trend arrows, alarms, and alerts informing the user they are dropping or rising at a certain rate or have reached a hypo level.
Insulin pumps are also available both with and without integrated CGM
