Monday, November 26, 2012

The Sugar Plum Fairy: How Diabetes Entered Our Lives

Well, as most of you will now know, those of you that Facebook chose to deliver the information to that is, the even keel I referred to in my last post did not last long. 

On Tuesday 23rd October we found out that Miss Chief has Type 1 Diabetes and is insulin dependent. Understandably people want to know what happened: what alerted us, how it was diagnosed, why we were in hospital and what happens next. So here's the story...

The Beginning

The Chief didn't seem particularly unwell that Tuesday but a few things had been nagging at me recently and there were enough symptoms for me to have an excuse to see the doctor. Most of what was concerning me appeared to be behavioural but I didn't want to wait until her 4 year health check to have those concerns alleviated. On the face of it her behaviour seemed normal but she just didn't seem herself to me. 

Just before Happy Shouty One was born, Chief started acting up a bit; resisting naps, throwing tantrums, getting out of bed at night. All pretty normal stuff for a 2 year old. Understandably this continued with the adjustment of having a new baby brother in the house. Eventually she grew out of it and a period of relative stability ensued in our family, Map Man's thesis notwithstanding. 

The Symptoms

A few months ago she started behaving a bit strangely and was at times a bit difficult. It started with not listening, entering her own little world where fairy dresses, wearing the right shoes, and singing and dancing were way more important than brushing teeth, sitting quietly on the mat for story time at daycare or getting in the car when asked. Very normal behaviour for a three year old. Then she started getting up at night again; using excuses not to go to bed, waking her sleeping brother. Again, all normal, and there was always a reasonable explanation: excitement because Nana and Grandad were here; disruption because she was sharing her room with her brother. 

One day she really stressed her teacher out and we had a big talk about how important it was to listen. I checked in with her teacher every day but was reassured that the main issue was not listening and this was normal for her age. I began to think we'd read too much into her teacher's initial complaint. But it bothered me because the Chief has always been more advanced for her age than typical. Her school friends are all 6 months older than her and she's always been very good with comprehension and communication. I just couldn't believe she'd gone from being exceptional to not just typical, but a bit annoying and vacant. We started giving her Omega 3 supplements and put it down to her close friendship with Little Katie as they distracted each other and acted up together.

Gradually stranger things started happening more frequently. Two or three months ago she suddenly grew taller and her appetite increased, clearly a growth spurt. But within a few short weeks she was having another one and this one kept going. She was really thinning out. She was hungry all the time and I began to wonder if I was totally underestimating how much a child of her age should be eating. I made a mental note to ask the GP the next time we were there. 

There was an increase in erratic, overly emotional and sensitive behaviours. She'd have mood swings and lose it because I misheard something she said. She'd be almost impossible to deal with some mornings until she'd had food and water. She'd get up multiple times a night to go to the toilet or get a drink. But again, it wasn't constant. Taken in isolation nothing was overly worrying and when I mentioned any of these to friends inevitably their children would be doing something similar.

Then Map Man went away one weekend and we spent most of the weekend with a close friend and her little girl. My friend pointed out that Chief weed a lot so I began keeping a closer eye on her. The following weekend we went away with Uncle Awesome and Auntie Caring and it gave me the chance to observe her a bit more. When I asked Auntie Caring if she thought Chief weed a lot she replied, "yes, but she drinks a lot too." I noticed Chief frequently asking Caring if she'd take her to the bathroom whilst we were out and wondered if she was seeking attention. So I ran a little test. On the last day of our holidays, Monday 22 October, we were on a brief trip to the beach when she asked to be taken to the toilet. I told her that it was too far away and that we wouldn't have time to come back to the beach before we had to go and pack. I suggested she do it in the water or on the sand, figuring if it was attention she was after she'd either throw a tantrum or forget about it. Instead she dug a little hole and weed on the sand. 

By this time we'd begun to notice Chief getting up for food and water after she'd gone to bed at night. When we were toilet training her we'd stopped her drinking after dinner time and for a while that was fine. But then she started sneaking into the kitchen, drinking from her water bottle and sneaking back to bed. We heard a snack packet rustling one night when we were in bed; as it was a health food snack we just giggled and let it pass, hoping that if we didn't make a big deal of it, it wouldn't happen again. But a week later we caught her eating an apple in bed. We briefly talked about it with her and she said she only ever ate healthy food after bedtime, never chocolate or biscuits. This was the only behaviour that seemed different to other children we knew.

Map Man was really quite unwell whilst we were away and I had noticed Chief getting a gunky nose when I took her in the pool. I wondered if she had the same virus and even though she claimed to feel well - apart from a cough - on the drive home I thought she was looking a bit tired and pale. 

The next morning we thought that all things considered she probably shouldn't go to the swim lesson she was booked into. They don't tend to like gunky noses, plus there was a possible UTI and I was concerned there could be intermittent thrush as she sometimes complained of being sore and itchy and seemed to crave sweet things. 

And that's as far as the symptoms go. As you can see they were incredibly subtle and not too different from normal behaviours in this age group. It's easy to see why so many parents miss the symptoms until their children are clearly unwell. 

The Diagnosis

Okay, so here is where it gets freaky. Miss Chief's GP is a respected doctor with a special interest in children. I take the kids there for their health checks and vaccinations and he also looked after us when Chief's foot issue was being diagnosed last year. But generally if they're unwell and I want to see someone at short notice I just take them over the road as Dr Scott Parsons is very busy and even when we do get a last minute appointment with him it's generally at an inconvenient time. She didn't seem unwell enough to inconvenience ourselves. 

I was working on Tuesday morning so I asked Map Man to call my GP, who Chief knows and who has 3 little girls a bit older than Chief. He made an appointment for Friday morning. On the off-chance I decided to try Dr Parsons because Chief goes to daycare on Fridays and that appointment would disrupt our schedule. If he wasn't free we'd just see another doctor in his practice. As luck would have it he had availability at a convenient time of 2.45 that afternoon. 

The first thing Dr Parsons did was ask me to take Chief to the loo and get her to wee in a jar, which took a while on account of her having performance anxiety. Well, wouldn't you if someone was crouched next to you holding a jar under your butt and asking, "where's the wee? Is it coming yet?" Then as he tested that I chatted about some of the things that were troubling me. I told him that Chief seemed to be hungry all the time.

"You need to come in here," he said and led us to the treatment room where he asked a nurse to do a finger prick test. Within ten minutes he'd diagnosed diabetes and was instructing me to take her directly to the hospital, after depositing Happy One somewhere - he was having immense fun making me chase him down the surgery corridors and wreaking general havoc. Dr Parsons told me that although Chief was well now in about twelve hours she'd crash and become extremely sick. She needed to go straight to hospital for stabilisation and would be there for about 5 or 6 days whilst we took a steep learning curve and had our minds blown with information overload. 

The freaky thing about all this, besides the fact that we just happened to get a conveniently-timed appointment with that doctor at short notice, is that had the diabetes progressed a day earlier, or a day later we probably wouldn't have caught it before she became sick. The previous day we were still on holidays and wouldn't have visited a doctor given her mild symptoms. The following day we were all due at work or daycare and wouldn't have gone. Her symptoms were so mild that I would never have thought of taking her had it not all been so convenient. Clearly she has a guardian angel. 

A couple of quick phone calls later I dropped Happy One off at Auntie Caring's house - with the nappy bag, thankfully but minus his blankie which he'd dropped at the doctors - and was on my way to meet Map Man at the hospital. It's a long way from Auntie Caring's to the hospital when you're trying to get there before the evening rush, and even longer when you're making the return journey at 10pm with only your thoughts and anxieties for company. 

The Prognosis

At the hospital the tests were repeated and the diagnosis confirmed within about 20 minutes of being there, whilst The Chief watched DVDs. Then a team of about 5 people put a cannula in her hand which didn't impress her much, despite the numbing cream that had been applied. A few blood samples were taken for all sorts of things, such as the presence of antibodies that can cause diabetes (inconclusive: Chief does not have either of the two major antibodies, which 80% of Type 1 Diabetics have) and coeliac markers (also inconclusive: they look for a number between 1 and 5; Chief was 6). We had the basics of Type 1 Diabetes explained to us and the treatment, which we were told would probably be between 2 and 5 injections of insulin a day. I asked for how long. The answer: forever; the rest of her life. 

Well, that was hard to swallow.

What is Type 1 Diabetes?

No one really knows what causes Type 1 diabetes but what they do know is that it's often a combination of factors, such as a genetic predisposition, and an auto-immune response to a virus. What it isn't, is the result of too much sugar and fat in the diet and an inactive lifestyle, although over time that can lead to Type 2 diabetes for those with a predisposition.

Miss Chief has a great uncle with Type 1 diabetes, so there is a tenuous genetic factor there, though generally it doesn't play too large a part in your risk of developing the condition. The auto-immune factor is just incredibly unlucky. Chief's teachers are trying to link it back to a virus she had a few months ago because they looked back and noticed she'd had some sick days but the truth is that it could have been anything. You don't even have to get particularly sick and might not even notice you've had a virus. And the diabetes progresses at different rates in different people. Some people might notice they've got a cold one week and the next week they are diagnosed with diabetes. For others there are so many weeks or months between the virus and the diabetes that they don't even make the connection. At the end of the day, it might be a matter of interest to know when this started but it doesn't really matter. 

Once the auto-immune response starts the body goes a bit nuts and starts destroying the insulin-producing beta cells in the pancreas. This is the bit which can happen really quickly, or quite slowly. As red blood cells live for three months the level of glucose in these cells can indicate how long this has been happening. In Chief's case we think it's been a while. When 90% of the beta cells have been destroyed the body is no longer producing enough insulin to meet its needs and the symptoms of diabetes begin to appear. 

Insulin is a hormone that the body uses to allow glucose, or energy, to pass from the blood into the cells. When the brain realises that it isn't getting enough energy it looks for alternate sources. First off, it breaks down fat stores and uses energy from that. When fat stores are depleted it will try to get protein from muscles. Ketones are a by-product of this process. Ketones are toxic to many organs and if levels get too high ketoacidosis occurs. Left untreated ketoacidosis damages organs and eventually they fail. A diagnosis of diabetes is made when elevated levels of both glucose and ketones are detected in the blood. Fortunately, Chief had not developed ketoacidosis by the time she was diagnosed.  

Although the brain gets some energy from fat and protein, this is pretty hard work and it would really prefer the nice, easily-digestible glucose so it sends signals to the body to consume more food. The patient becomes hungry and eats more. As the blood sugar levels rise the kidneys try to flush it out by producing more urine, which uses up fluids and makes the person more thirsty. So there are your main symptoms: excessive hunger, thirst and weeing.

The Hospital

Chief was eventually moved to the paediatric ward late that night. I couldn't really wait to see her settled in as I had to go and collect Happy, who was sleeping in his clothes, and a 4-year old girls cardigan, in a portacot my sister-in-law had borrowed from a neighbour. Map Man spent the night at the hospital. Chief was put on a drip and given shots of insulin to start her stabilisation. 

Over the next 3 days we spent hours with a diabetes educator from the diabetes clinic. We spoke to paediatricians, registrars, nurses, social workers, psychologists and dieticians. We took turns to stay the night there and go home with Happy. By the time we left we had been given bags of expensive equipment and had learned how to read her glucose levels, or "fairy blood" with a finger prick 7 times a day and give her a total of 5 injections of 2 types of insulin 3 times a day, using her "fairy pens". We were shocked, sleep-deprived and hadn't spent any time as a family. Happy One had been shunted between daycare, family and friends with only bed and breakfast time spent with Mammy or Daddy. And all with his trademark smile and happy nature. We survived on other peoples' generosity, with friends and neighbours cooking, baking and shopping for us, feeding the cats and pulling our clothes off the line. It was a crazy time. 

The hospital and staff were great, with the possible exception of one ditsy nurse who, amongst other things, managed to prick her finger on one of Chief's needles, causing Chief to be sent for blood tests. As if she wasn't dealing with enough needles. When we left hospital we had the mobile number of the paediatrician and phoned her once a day to discuss glucose levels and insulin doses. When Chief ran particularly low one night (i.e. low blood glucose levels, thus risking hypoglycaemia, or a "hypo") we were able to call the paediatric on-call registrar at the hospital for advice. Ten days after we got home Map Man and I went to the diabetes clinic to chat to a dietician and an educator and ten days after that we went with Chief to talk to the paediatrician and a psychologist. Although it can be very isolating at times, I never felt like I was totally alone; I felt like we were really well supported. 

The Aftermath

And so a month later we are still adjusting to life with diabetes. After a short period of stabilisation and target glucose readings Chief entered a "honeymoon" or remission phase, where the pancreas temporarily produces small amounts of insulin again. Her doses were changed to prevent her glucose levels spiking up and down too much, and she went down to 4 injections a day but I feel like we're still working out the right doses and food for her. There are still many things for us to learn and many challenges ahead. The repercussions of our unplanned week in hospital have been more than we could have imagined: an unpaid credit card bill and the accompanying interest charges, an expired drivers license, a house so disorganised, untidy and full of clutter that we lose things and jobs take twice as long as they should. The toll it has taken on our family has been surprising but I guess it came at the end of a tough and exhausting year. And it didn't stop there. A week later one of our cats had an accident and spent a couple of expensive nights at the vet extremely unwell (thankfully, now fully recovered). And we have more things to deal with before the end of the year, which I won't go into. 

One thing it has taught me is how amazingly strong and resilient our little girl is, so much more so than her mam and dad. She is brave and beautiful and it breaks my heart that I couldn't protect her from this. But I'm determined she will live as normal a life as possible. This is what the universe has given to us and this is what we must deal with. No point in dwelling on it and feeling sorry for ourselves or each other.  There are so many worse things in the world, and the research efforts and medical advances for Type 1 diabetes are quite amazing. Chief is using insulin pens that were released about a year ago, and which allow half units of insulin to be administered. Do you know how much that is? Not even a drop! 100 units is approximately 1 millilitre! And her needle tips are 4mm long and only 0.23mm wide! They are seriously tiny. Sharp little buggers though. Scratched my hand with one yesterday and it hurt a hell of a lot more than an injection. 

This won't be my first post on diabetes. We are about to start an incredible journey and we are only at the very beginning. We'll be learning a lot about diabetes, and a whole lot more about ourselves and our amazing children. 

1 comment:

MumBuzz said...

A beautifully written post Lindsey. I am sorry for Miss Chiefs diagnosis but I am glad to have met you and your wonderful family.