Double trouble – by Jenny Foster


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Oh no, it can’t be. Astonished bewilderment ringing in my voice as I responded to doctors revealing 6 months ago, that our eldest son Ewan 8, had Type 1 diabetes.

In the few weeks leading up to this significant moment Ewan had only shown mild symptoms, yet here he was presenting with a blood sugar reading of 37. (I can say that now and understand why that level was met with wide eyes from our GP!). None of our family members had had any experience of the condition and so I hadn’t made the connection between his symptoms and what turned out to be their cause.

Our steep (actually, it was more like vertical) learning curve began.

Unfortunately for Ewan the news came as a double whammy. During our 4-day stay in hospital to try and reduce his blood sugar readings, Ewan also tested positive for coeliac disease (a serious condition meaning a life without gluten).

Plans were made for him to have a small intestine biopsy to confirm the diagnosis, but only once we had adjusted to our new life with diabetes. We put this to the back of our minds and dismissed it as just another way of Ewan’s body telling us that all was not well.

Things actually settled relatively easily. Ewan impressed us all with his laid-back attitude to all that was happening to him and after only 2 weeks back home he was happily injecting his insulin himself. Our family, the diabetic support team, his teachers and friends had all been fantastic and so he’d quickly established a routine at school and at home that was suiting him well. His blood sugar levels gradually reduced into single figures and amazingly we managed to keep them there.

To our disbelief however, Ewan quite quickly started showing the signs and symptoms of coeliac disease that we’d been made aware of in hospital. Having never seen these signs before we questioned our suspicions as over sensitive parents and accused ourselves of ‘seeing’ symptoms that weren’t actually there (because we didn’t really want to believe that they were).

But, following a biopsy 3 months after his diabetes diagnosis the news we had been dreading came. Hitting and shaking up our routine like a tornado tearing up a small farmhouse – the biopsy had confirmed Ewan had coeliac disease.

To be continued…

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I have great admiration for any parent who finds themselves looking after a child with diabetes. As someone diagnosed as an adult only a couple of years ago, it is tough at first and a steep learning curve. It does however become easier as you know more about the condition. It takes a while to work out what works for you and how your body reacts in different situations. Keep questioning the doctors, don’t automatically accept they know best. I found the information from the diabetic nurses invaluable, and getting in to a good eating routine, change seems to throw things off balance.

Sorry for the delay in getting back to you, my son is on a carb counting, which is a lot easier than when he was first diagnosed and it was a strict regime of eating at exactly the right times, but the downside to that is they have to have injections depending on the amount of carbs they eat, (which can be several a day) I am at present trying to get my son the insulin pump, I have been told by quite a few it really helps teenagers and younger kids, but my son doesnt deal very well with the diabetes, he did at first but not now, I was told not to go for diabetic foods because you pay a lot for them and you can get them in sugar free for a lot less, with the coeliac I tend to buy two different named items of the same thing that way I know which is for him and which is for my other two children and that way I dont run the risk of cross contamination, and buy plenty of kitchen foil, it really comes in handy, especially as my son is not keen on the bread unless its toasted lol it really does turn your world upside down, I dont think people understand how much and it is good to talk to others that understand what your going through, hope you are all well xx

Hi Theresa,

Feeling alone is one of the hardest things to deal with, no matter how much you talk to friends and family no-one gets it quite like us!!

Have you got any tips or hints you could pass on? Which regime does your son follow?

Jen x

My son is now 16, he was diagnosed at 11 with Diabetes and 13 with Coeliac, and Jenny you are right it isnt easy and it is great to be able to speak to other parents who are going through the same thing, I wish there was something like this when he was first diagnosed, you kind of feel alone and no one else understands what you go through on a daily basis xx

Hi Sarah,

You’re right its not easy, its far from it! Thats why its great to be able to chat about your frustrations and difficulties with others who are experiencing the same thing….. no-one else can truely understand. If you want to get into email / facebook / twitter contact to chat more that would be great!

Jenny

Jen I think that you’re amazing. You hang in there. Its something that you have to deal with out of just pure love for your children. It must be so so hard to watch them go through it and wish that you could take it away. You all hang in there. Chin up. It will open my eyes reading your Blog as to what the disease is as I also have a little girl who is nearly 7 etc. Lots of Love.x

I couldn’t agree more with you Lisa, kids resiliences just amaze me! and Angela – what can I say? Double Trouble on many levels for you, hope your kids handle it well too, that makes our job so much easier!

My 8 year old little girl also had type 1 diabetes (diagnosed aged 5) and coeliac disease (diagnosed aged 7). It’s certainly not easy having (or managing!) both conditions. I have huge admiration for the children that live every day with these conditions.