Concerned about my son

[suzi]

Hi Sarah,
What a worrying time for you, you must feel as if your in groundhog mode, with little help from the proffessionals. Regarding Keytones, a trace is normal even in non diabetics(starvation keytones) and when ill can register up to about 2+ in my own personal experience, its when there are accompanied with higher blood readings that they become an issue.

Recently my 11 yr old son Andrew was in hospital with DKA bought on by vomiting and diahhoroea, he was dehydrated and i agrueed with an F1 at 5am that i was bringing him into the hospital. Andrew had 4+ keytones,(tested at home) 4+ glucose(tested in hospital), but blood sugars were not as high as i would have expected and didn't go higher than 16, but then he had ,had his bedtime insulin prior)
First thing in the morning is a good time to test for keytones (a trace will be starvation keytones) anything significally higher, then take note.

My son was illish for about a month and it was in the last week that i noticed a big difference, the bed wetting (he was 7 at the time) became a big issue, then the constant thirst, he stepped out of the bath one night and looked as if he'd stepped out of a concentration camp, he'd lost 1st 4lb (tried to get GP appointment for 3 days!) ended up taking him to treatment room, waited 2hrs, found 4+ keytones and bs of 33.4 (the highest there machine went up to) straight to hospital for 4 days. This will be familiar to so many Mums.

You know something is wrong, keep badgering them, you don't want your son to get to the stage my Andrew did, when i think back on those days now, i don't know why i didn't spot it sooner, think i was in denial, and that really tugs at my heart strings.

Unfortunately most hospital staff and doctors don't have enough knowledge when it comes to T1 diabetes, so i would do as Shazza and Sue have suggested and get in touch with your husbands consultant asap, with a family history ,i don't see how he could possibly refuse to see your son.
Best of luck and take care,
Suzi x

 

[Sarah_1_2_3]

Hi Suzi,

I really do feel like I am stuck. Hes not moving downhill, but hes not moving uphill either. I would expect if this was all just a 'viral issue' as they call it, he would be at least starting to get better. Its like being in limbo. I'm really trying not to worry, while still keeping an eye on him, and still trying to keep the normality going. I have 2 other children and I can see its affecting them, esp the older one who is getting jealous. Stuart is so grumpy and tired and lies about wanting to watch Tv all the time, hiding under a blanket. My older one gets so annoyed with him coz he wont play and when he does he 'isnt playing nicely'. I feel like I'm pushing the baby aside with my worry over stuart. He gets fed etc and put down again, unloved!

Your story about your son, is like you say, like so many others. Its that which fears me the most. I can invisage us being there with the same thing, yet me knowing all this and not gettin it fixed. I keep thinking just when I see him, thats something is wrong. Something just isnt right, its not normal to be like this. Yet one minute he seems ok, then the next lying around like hes just run a marathon. There is nothin I can do until it does (or doesnt) get to the next stage. Our Local GP is keeping a better eye on him than the hospital were prepared to do. it gives me little faith in the hospital. But as you say its their lack of knowledge on T1 that is the problem. They arent even prepared to see that there is such as thing as glucose intolerance prior to getting diabetes. This is something that 2 senior GPs have told me and you guys all seem to agree. You all have stories of your kids getting progressively worse. Like you say I need to keep at them. Ia'm going to go back to the GP again next week if nothin has changed (either for the better or the worse) and push them to do a full blood test. I know he wont like it but something needs to be done this has gone on too long.

In a way I wish he did have diabetes then at least we could help him and he could be getting better, its somthing i dont want him to have but I'm sure you see my point.

xx

 

[diabetesmum]

Hi Sarah,
One way of establishing whether or not he's producing enough insulin is to get his HbA1c done. I'm sure you will know what this is as your OH will have had them in the past. If it is above the normal range, he's almost certainly diabetic - I don't know another reason why an HbA1c would be raised. I would think that non diabetic children would have a reading in the 4 to 5 range. GP's can do this but it would have to have to be a proper blood test sent off to the lab, which might be a bit traumatic.

Diabetes clinics, on the other hand, have nifty machines that can do the test with a simple finger prick sample and the result is available within 10 mins. How you could go about getting this done I'm not sure?? But it would give you an answer.
BW
Sue

 

[Sarah_1_2_3]

Hi,

Yes Sue thats what my OH said. But as far as I'm aware the hospital do a full bloods for it as do our diabetic clinic at the surgery. Michael says hes only ever had the 'posh machine' at the clinic in town. Which I think would be almost impossible to get him into, esp when the surgery here can do the same test. I was also thinking that with a full blood test anything else may be picked up too. Killing 2 birds with one stone as such.

Last nite he was very odd. Staring into the roof, and looking at us like he was stoned. He fell asleep in my arms not long after this. I did think about a BG but his urine was clear before this and had been in the morning too. This morning it was slighly darker than traces. And his pull up was soaking wet compaired to normal. You all seem to mention the bed wetting being a progression, and he would normally have a dry or only slightly wet pull up, normally if I dont catch him to the toilet in time for the morning pee. This could be a urine infect tho. So I might put a sample down to the surgery 2moro morning for the lab testing. Althought I'm likely to get looked at like a neurotic mother. I could always wait till friday.

Thanks again guys, you are all so amazingly helpful. If only docs were so knowledgable!
Sarah x

 

[totsy]

hya sarah,
just wondered how you are since your last post