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But he's NOT fat

But he's NOT fat

Jacqueline Harris describes how her son was diagnosed with Type 1 diabetes and how support helps

But he’s not fat!

Six years ago, my then four-year-old son was diagnosed with Type 1 diabetes. Up until that moment I never really knew what diabetes was, or indeed anything very much about it. Type 2 diabetes is often in the news, but Type 1, an autoimmune disease, is not so often mentioned. Basically, at some point, my son, who was genetically disposed to getting Type 1, got a virus which killed off his pancreas.

No-one in our family has Type 1 and it came out of the blue, as a hideous shock.
When he was first diagnosed, well meaning friends told me two things; that there would be a cure shortly and that it was entirely manageable/no big deal in this day and age. Any parent of a child with Type 1 prays that the former will be true, and certainly, technological advances are making life easier. 

They were wrong however, about the second point, it IS a big deal and it involves the steepest learning curve I’ve ever experienced.  In short, if my son does not get the right amount of insulin there is a risk he could have long term serious health issues and even die. Keeping him alive is a huge responsibility and an extraordinary amount of work. There are people who make my life and his life a million times easier and then there are those who just make things difficult.

Firstly, I must mention the hospital staff, who have been amazing and extraordinary in the two hospitals we have attended. First we were at Barnet and they supported us through the first few years of injections and then we moved to UCLH to get an insulin pump, one of those bits of technology that has literally transformed lives. Every single member of staff has been supportive and helpful, and I cannot fault the NHS for giving us over £3,000 of kit and teaching us how to use it.

The next set of wonderful people have been the Nursery, childminder and then the school. They all simply said, tell us what to do and we will do it. They could have made things very difficult, but instead of disabling my son they have made him fully enabled. The school has borne a financial burden too as my son has no additional money; yet the staff are always able to attend training and support him in school, so much so that he has run marathons and been involved in every aspect of school life. We know people who have had such negative and difficult experiences; their children have missed time in the classroom and one who even had to go back every lunch time for seven years to deliver insulin. (The law has changed since then and schools can no longer refuse to administer insulin).

Thoughtful friends and family also help, they check what he is ok to eat (everything) and keep the packets of food to hand so I can see how many carbs are in the food he is eating. His insulin intake with meals is governed by his blood sugar levels and the amount of carbs in the meal, so this is important to know. Just small things can make a big difference. 

This extends into the wider world. It only takes a little thing to make life easier; restaurants particularly should take note.  Most of the big chains have the carbohydrate content of food easily accessible. It is usually on a website or in a handbook and the best restaurant chains have staff who know exactly where it is if you ask for it.  Pizza Express, Jamie’s Italian and Wagamama’s come top for this, the latter even sending the manager over to see if there was anything else they could be doing to make things even better. It makes good business sense as there are up to 4 million people in the UK with diabetes and whilst most have Type 2, they also need to be watching the carbs and eating well. 

In addition, we do not revisit places where we have received poor service and tell all our friends too, so some years ago, we went to Carluccio’s and had a very difficult experience, where we were made to feel as if we were asking for state secrets and we have not been back since. It may by now be wonderful, but it was such a negative experience we don’t want to risk it. More recently we went to Prezzo, where the manager was so unhelpful and uncaring and it turns out they do not have the carb information anyway. Their reason for this was that they change the menu too frequently. I change my menu every day and manage and it is really simple to work out the carbs for a bowl of pasta or a pizza- I even offered to teach them how to do it. Their response was very negative and now we will not go there either. I do not expect small independent restaurants to do this, we have books and apps to help us, though I do hate guessing, but a big restaurant chain must have standard serving sizes and therefore could offer the information with no real difficulty. 

Theme parks are another place where we have had a few issues. If you were to look at my son you would not think there was a problem, so people question us when we need to have a pass so as not to queue. If, for example, we were queuing, and my son had a hypo, where his blood sugar drops too low, he needs to go and wash his hands, do a blood test and have some glucose, there by losing his place in the queue. If you have been queuing for some time this may also increase the likelihood of having a hypo. In addition, he is supposed to take his insulin pump off if he goes on a roller coaster and therefore cannot queue as his blood sugar is likely to rise too high without the insulin for any length of time. Disneyland are very good at handling this situation and they answered questions by email before we went. We simply showed them the insulin pump, explained he had diabetes and they gave the whole family a fast pass. 

Legoland are in the process of changing how they do things- originally it was as easy as Disneyland, but more recently they require ‘proof’ in the form of Disability Living Allowance or something of that nature. This means you do have to know in advance you are going to need this and bring it with you. I always check with places before we visit so I knew, but a huge number of people did not. I do appreciate they have a problem with people trying to play the system, but the biggest queue of the day was to get the fast pass and there were lots of irate and upset people who did not know about needing documentation. As it happened we had a lovely day after a shaky start and I do know that Legoland are in the process of working on their policies regarding access. 

What we do know, six years later, is that all outings need planning and that some people react in startling ways. At the very beginning after diagnosis, when I was very unconfident about giving injections, I went into the mother and baby room to give my son insulin. I picked it because there were washing facilities and it was not in the middle of a restaurant when I was still practising what I was doing. As I was giving him the dose, a woman stood up, tutted and moved away- maybe she thought I was helping him shoot up Class A drugs! This stayed with me because I got unreasonably upset by her reaction. I know she probably hadn’t the faintest idea what I was doing, but her look of disapproval was so strong I can still see her face. I’ve also had people ask if I was a health freak for wanting to know about the carbs in the food. Their reaction when I explained was’ but he’s not fat!’ I knew nothing before my son’s diagnosis and I’ve learnt a huge amount since then, but even in my ignorant state I do hope I would have shown a bit more tact and not horror and surprise. 

No, my son is not fat, nor does he have diabetes because he ate too many sweets, he was just really unlucky with his genetic make- up and if you show interest and support it will make a difference for all of us.
Signs and symptoms of Type 1
One or more of the following symptoms may be associated with diabetes: 
• Thirst, tiredness, weight loss , frequent urination
• Amongst children, specific symptoms may include stomach aches, headaches and behavioural problems.