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MODY 2 - GLUCOKINASE

L

Lady P

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Has anyone any experience with Mody 2 in children? i could do with some advice!

my daughter is 9 been suffering with headaches, tummy aches and dizzyness. She drinks like a fish and is forever going toilet in the night. I pushed and pushed the doctors telling them there was something wrong and we have the diagnosis of Glucokinase Mody 2 ( which i am also).
she has wierd days when she is grey, lathargic, very very moody and feeling awful, there is no pattern to these they come and go ( never around when we visit the diabetic clinic!) so i feel drs dont believe me, i want to help her and i feel so useless.

I control her diet, she does have the occassional treats and her numbers came down to 6.7 i think the last hb1ac was.

myself, i had suffered headaches for years, being told migranes, cluster headaches, stress, tension etc etc. but only last year did my doc agree that my bloods were high and trialed me on metformin... Bang headaches disappeared!! best day of my life!!!!
I want the docs to trial my daughter on metformin, but they dont seem keen as its just headaches and tired - seem to think its more homelife than sugars! makes me annoyed and really feel as they dont listen! driving me nuts!

so if anyone out there knows about Mody 2, or has similar problems id love to hear from you :thumbup: :?
 
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)
 
phoenix said:
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)
Click to expand...


done lots of testing, periodically and permanent, when we did solid for a month she was quite good, highest was 13 lowest was 1.
when she is moody/grey and dizzy she is usually between 9-12, but occassionaly the symptoms are there and she is 8 something, which as you know for Mody is 'normal' . Drs insist that we cannot have hypos or hypers, but she deffinately suffers with something. I just hit a wall - go to have an eye test, its growing pains, she needs a proper bedtime routine( which is an insult as she has been in a routine since being in special care at birth!)

Ive got the monitor for her but dr tells me not to check as it makes us worry! so basically ignore it! it doesnt matter that shes high or feeling poorly we just have to live with it!

it concerns me as reading about diabetes constant high sugars lead to complications later in life, now if she is high all the time - as 'her body thermostat is set higher due to Mody' whats going to happen to her - i dont want it to turn into anything bad for her, and i dont like being helpless when she is 'toxic' Drs dont seem so worried as numbers arent greatly high, but if you feel horrid every day its not nice is it? and i truely think because there arent that many people with this that they dont really know! they can only tell me what the book says and as we all know not everyone is the same.
 
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.
 
Thanks i appreciate your reply.

I get so frustrated as it seems no one will listen to me, almost feel like letting her eat 2 mars bars and have a lucozade before we go to the consultant - so they can she how she goes! but cant obviously do that, idont want to harm the poor love! but yes i will continue to push and hopefully one day they will listen to me.

Yes i suppose we should feel lucky we have the good Mody ( if u can call it good!) and agree lots of others havefar far worse things to deal with my heart goes out to them all and i hope everyone finds a way to deal and get their BG under control. u 2.

many thanks
 
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