Thank you so much for your kind words. I really appreciate it!
You are most welcome.
I am aware of the TPIAT surgery but its not something they perform on kids over in the UK. Its more common in America. Its amazing really as the kids that have it dont end up as diabetic due to the islet cell transplant. Im going to be speaking to the specialist about it when we see them next in a couple of weeks. My worry is if his pancreas is already too damaged that they wouldnt be able to do the islet cell transplant.
Because I had a full pancreatectomy and at a relatively advanced age, I've no detailed awareness of islet cell transplants. I happen to be under the Head of the Oxford Centre for Diabetes, Endocrinology and Metabolism (OCDEM) - who have been pioneering research into this; but I'm so grateful for the time that I get along with advice specifically for me, I try not to digress and take more than my share of this valuable time. Even though I'd like to know more!
Yes pancreatitis is extremely rare in children. My kids are the only ones in the UK with their specific genetic mutations. We live every day wondering if they might suddenly have an acute attack and the pain during these attacks are horrendous. It is the worst thing in the world to see your child in so much pain! My son takes Creon and also additional Vitamin K supplements as he’s low in that vitamin as its one of the fat soluble ones.
My sister spoke to a friend who’s diabetic and he said the technology nowdays is amazing so thats something somewhat reassuring. Im just worried that its another thing to cope with ontop of what we already deal with day-to-day with the pancreatitis.
The Diabetes is a bit demanding, but it does get easier from month to month. There is an excellent analogy with learning to drive: at first it's a bit frightening, confusing and yet awesome to do, with so many things to deal with. But pretty soon one gets into a car and drives off without even thinking about the mechanics of driving - just paying attention to the potential road hazards ahead and often just lip service to some of those!
One question is would the HBA1C blood test show up for 3c? Im just thinking if it causes you to fluctuate rapidly between high and low and the HBA1C is an average over the past few months, would the high and low swings cancel each other out??
Yes, the HbA1c outcome is the same for all of us - regardless of Type. Many non T3cs have considerable swings; its just that for me (if I don't keep on top of this) those swings can be very rapid. In some ways having no pancreas means I don't have any unforeseen releases of insulin, so I know what I have to manage - always. So far I can't get my HbA1c below 45, which would be viewed as pre-diabetic for non-Ds; but I have NO aspiration to achieve a lower figure.
However, I would like more tech to assist me with my daily management and perversely because I do manage well enough I'm currently ineligible for that extra tech from the NHS. A child would (rightly so) become eligible for extra tech support; but this introduces a question about their ability to manage all of that (or initially the parents' ability) and the psych impacts of this extra commitment.
Also would you recommend we get a blood sugar testing machine and test ourselves at home??
I am reluctant to say specifically yes or no - even for an adult, never mind a 5 Yr old. If your son's HbA1c is below 42, then I might think testing isn't needed. If above, then that's a discussion to have with your team.
But testing is intrusive: finger pricking involves washing the finger first, the pricking (which shouldn't be, but can be painful) and getting an actual reading (involves getting a test strip to engage with the blood drop, without spoiling and giving a rejected result!). All doable, but ....
One thought, if you bought a meter and test strips and tried it on yourself, 5+ times daily for a fortnight, you would get your own insight on what it all entails, (also what non D numbers can be) and whether you feel this might help your son - at this stage. The best quality finger pickers are inevitably more expensive, both for the device and the strips; yet if that is going to be for many years to come, the quality makes sense. The biggest cost lies with test strips, rather than the meter or finger pricking device; there are recommendations on this forum for best overall value FP testing - which I need to search for and find a link for you.
I was discharged from hospital with a cheap, nasty (vicious) finger pricking device and had more failed test strips than one's with usable results. Very disheartening at that time, as well as frightening and painful. Luckily, I had access to a close relative who's been T1 for over 40 years and while quizzing him about FP technique he mentioned the Accu-chek FastClix device, which has a wide range of depth settings and takes a canister of lancets. This is relative Rolls Royce machinery! I persuaded my DSN to help and got one direct from her secret store, subsequently with the associated meter (which has expensive test cartridges) and the lance device clips to the meter - providing an all-in-one package, with no immediate disposables of used lances or blooded strips. So great tech with convenience. I had a hassle with getting more cassettes prescribed by my GP, but that's another story.
Modern tech, based on Continuous Glucose Monitors (CGMs) is a great help but, at present, does NOT completely replace finger pricking. So knowing how to FP and being comfortable about doing that is essential. I believe one can still get a free trial of Libre 2, which allows 14 day's worth of flash CGM. This is an effective marketing ploy by Abbott for their Freestyle technology, draws one in; but I think this is premature. If your son is diabetic or pre-diabetic then a conversation with his Team is needed.
Apologies for long posting, do ask if you need further gaps filling - but I still suspect the pancreatitis is your main focus for now - which I know so little about. I can't truly imagine how my wife and I would have coped if we had been faced with your circumstances; no doubt we would have struggled through, or at least I hope we would, but ....
