Diagnosis

I was going to write something completely different today. Yesterday was my birthday, and — despite E running consistently high now for two days, irritating but welcome growth spurt we think — things have been good: he took his Grade 7 piano exam and it went well. Daughter M won a poetry competition at her school — and played well in a concert last night.

***

Yet. This morning I open my work emails to find one from an ex-student and long-standing friend and colleague: her 12 year old son is in hospital, diagnosed yesterday with type 1 diabetes.

Aside from being heartbroken for her — such a blow, just a blow for her and her family — I was overrun by things I wanted to tell her. This is where I started:

Resources: Children with Diabetes UK, JDRF, and Diabetes Support Forum. Book: Type 1 Diabetes in Adolescents, Children and Young Adults by Ragnar Hanas. 

 

Make sure he gets onto MDI — multi injections. Then say you know all about pumps and you want to get on the list. Ask to be taught carb counting as soon as possible.

 

DO NOT let them tell you to bring his numbers down mega-slow. It will take a few days, but sitting around 13+ is NOT right. Keep on top of changes to the amount of insulin so that he comes down in few days. We sat with high numbers for several weeks.

 

DO NOT let them tell you that he can’t eat this, and can’t eat that. We received advice that was more suited to type 2 when E was diagnosed, and it was devastating. Your son can eat a normal healthy diet, with treats etc. He can only really do this when you learn to carb count — so that you can always cover what he is eating with insulin.. Things like brown bread or brown pasta being better is NONSENSE. In fact these are harder to dose with type 1, because they take longer to digest and therefore you can’t be sure that the insulin with the meal has covered them. What you DO need to watch while on MDI are snacks without injecting — these will send his blood sugar up quickly. You need to keep them small or carb free: small packet of biscuits — or better, cold meats and cheese, which have no carb. We can talk more about this later.

 

Also, I would advise regularly testing before a meal and if you can bear to, 2.5 hours after as well. This will help you quickly learn how his long term insulin (Levermir) is working (before the meal) AND how the short-term (Novorapid) is working (after the meal). When E was diagnosed we were only told to test after eating — and this was patently outdated and darn near useless. We had no idea what was happening with his blood sugars for several weeks.

 

Get Lucozade in the house — the fizzy stuff, if he likes it. Or small cans of coke. Glucose tablets and jelly babies work well, but fizzy is faster. Also small cartons of apple juice work very well. Get 15g carb snacks for after hypos: pre-packed small packets of biscuits like maryland choc chip or mcvitties digestives. Spread these things around the house — in his room, in your cars, in the kitchen. He will come home with a lot of kit. Empty out a cupboard in the kitchen and keep everything together.

 

The team at [our local hospital] are very nice, but not always up to the minute. Get yourself onto Children with Diabetes UK AND join the Diabetes Support Forum…. Go to the Parents’ section and put yourself on it. You will find a huge amount of support.

 

Oh dammit, H. It’s a hard road. I’m so sorry.

 

Call me when/if you can. I’m here.

 

Sorry if this is information overload. It will make sense very quickly though, and I wanted to tell you some things.

 

I’m so upset for you and your family. It will get much better, but…cry all you like. I cried for weeks and weeks and months. And we still cry now.

 

xxoo Patricia

***

That’s really all I want to say today. The same age as E at diagnosis. She said in her note that she kept up with this blog. And that she used it to learn some things before they went to the doctor’s with what they suspected.

 

In my head today I am re-running the scenes of diagnosis, and the horrible sense that we thought we were learning when in fact we knew so little. For so long T1 seemed difficult, but doable once we ‘figured it out’. The real sinking heart has come over a number of months, even a year, with the realisation that we will never figure it out. And that some of the initial information we received was inaccurate, plain mis-leading and patronising.

 

Another time I’ll make a clearer list of what I would have found helpful at diagnosis. It’s so confusing. But for now, well. I wish her luck, and wish, as I so often do, that I could just take this away from our beautiful children.

The things that we do

 

I have made a point of trying to build links with fellow d-bloggers. And I’ve got my all-time favourite support forum on my sidebar too.

But something else occurred to me yesterday. I want to tell you about JDRF. Juvenile Diabetes Research Fund. A global organisation which funds research of all sorts into type 1 diabetes. And specifically, into a CURE. Yes, a CURE.

This will happen some day. Don’t get me started, because even though the song I’m going to link to here makes me happy, thinking about how badly we all want a cure makes me cry.

If you don’t know JDRF, you need to. It’s much less well known that Diabetes UK, which also helps fund research and support those with diabetes — though Diabetes UK does spread the it out a bit, and take on type 2 diabetes as well. But JDRF is the core stuff. There’s a branch near you. And a central one in your country. 

We give to JDRF. We can’t leave it to someone else to do. We’re all in this together.

Which brings me to my song for today. All These Things that I Have Done, by The Killers. On my new Killers playlist, put on my iPhone by my son. You know, the one with type 1 diabetes. Who still loves his music, his drama, his politics and philosophy. Who is still infinitely kind and good despite everything he goes through. How we long for a cure sometime in his long, long life to come.

In fact, as I type this I can hear him playing the very same song downstairs on the computer. While doing his homework mind you —  but we won’t go there!