MODY 2 - GLUCOKINASE

Bump.
(though just a thought because I suspect you may have been told not to test her glucose but It would be interesting to know how high they were on the times she feels like this)

Hi Lady P
I’m so sorry to hear about your daughter. You’ll probably have been told the official line that if you had a choice of MODY then MODY-2 would be the one to go for, as its effects are milder, but any diabetes is a pain, and childhood diabetes is always tough and unfair. As you know, it is usually assumed that MODY-2 can be dealt with by diet (esp. low-carb) and exercise alone, and in that sense your doctors are following what is generally correct. But I have read of cases where MODY-2 sufferers, including children, have been put on sulfonylureas and even insulin. As in so many cases, it’s down to the individual patient, and perhaps the individual doctor, and I don’t have the knowledge or expertise to advise (and I don't have children, so I'm even more useless).

I will say, though, that I spoke to a top diabetes professor a couple of years ago who told me that he was convinced that in a few years’ time we will be talking about the existence of HUNDREDS of types of diabetes, and that he personally felt that MODY treatment in particular needed to be adapted to suit the individual concerned. Obviously, having erratic blood sugar levels is enough to make people feel ill, especially the vulnerable young, and it seems to be generally agreed that running higher BG levels can lead to complications, especially for those who have a genetic predisposition to this. I would therefore keep up the pressure on GPs: they may have their reasons for not prescribing metformin to your daughter, but there may be other alternatives. ‘What would YOU do in my situation?’ is a question I’ve got used to throwing out at GPs and clinicians – sometimes you get an interesting reply.
The one big positive that your daughter has is that she has you – that you know the condition well, and can help her to make the adjustments. And there’s a lot to be said for having a definite diagnosis – MODY is very often unidentified and mistreated.


In answer to your question on the other thread, I don’t know what MODY I am! The clinic settled on ‘MODY X’ a while ago, meaning that they think I have MODY but the gene causing it has not yet been identified. So they’ve sort of given up, really. I’m never quite sure whether to post on diabetes forums because while I certainly have diabetes there are other apparent auto-immune complications which keep emerging, but which the clinic also can’t explain, so I don’t know whether they are manifestations of the rogue MODY gene or whether my diabetes is actually a side-effect of something else. Intermittently feeling lousy, dizziness, shortage of breath, and that indefinable sense that one’s body just isn’t right are things I just seem to have to live with nowadays, but given the horrors that other people are living through I just try to keep positive and keep the old BGs under control.

Sorry I can’t be more helpful. I don’t check forums very often at the moment, but if you ever want me to reply do please p.m. me and I will get back to you. Very best wishes to you both.