Newly Diagnosed 4 year old daughter

Hi all

I am the parent to a newly diagnosed Type 1 diabetic 4 year old daughter. We are a week and a half since diagnosis. We found out by her slipping slowly into DKA and having to spend a couple of days in HDU being rehydrated and recieving insulin. We are coping fairly well and are already carb counting and trying to get things under control. She has taken to the continuous regime of testing and injecting without so much as batting an eyelid. It's been a big thing to get my head around and fortunately my wife is a nurse and I am just about bright enough to get my head around the science and the regime.

The issues we are having is getting her blood bm' down. Getting the ratio right seems to be an art and she is rarely out of the teens and often in the twenties at the minute even when we feel are carb counting is spot on. Our DSN (diabetes specialist nurse) has been a god send and assures us that this is normal at new diagnosis when she was allowed to get in such a bad way before diagnosis.

My concerns are at the minute the high bm's, making sure the injections are right (we do seem to leave tiny bits of leakage from the needle) and getting the ratio of medication to carbs right.

We started today with a bm of 4.5 and we're hopeful we could keep to a target range but have been way out with readings in the 20's two hours after eating and still correcting all the time. I am really looking forward to feeling like we stand some chance of getting a control on this as so far diabetes is a slippery beast!

I imagine I will be leaning on this forum for some advice in the coming weeks/months/years so please bear with me.

Best wishes and hope you are all doing okay
Stuart

Thanks guys, seems like here has a strong network of support.

It's reassuring to here that the highs are normal, it's been making me a little worried that we can't bring it down. The amount she is eating is actually unbelievable, we have an upper limit of 3.0 with the bolts which when you account for a correction just isn't enough insulin to cover the food. She is in pretty good form though and looking and acting her normal self which is a pleasure to see after all the drama and heartbreak of the weekend before last.

Another question......does anyone use the Accu check expert? We have one and I realised it has a carb counting tool feature that we don't use. We have been calculating the carbs manually but it appears the machine can do it for you which might be really useful for the future. I guess we need to figure out how to adjust the ratios.

You are right it just works out the bolus for you based on your carb grams and ratio. I've answered my own question this morning as in that until the Lantus is set right (it varies every couple of days) we shouldn't use that function according to the instruction manual.

endocrinegremlin said:

a 3 unit limit on your bolus seems utterly bizarre. And is probably the problem. I'd question your team over that stat. That would not get me through 2 pieces of plain toast. She may be a diabetic that has a higher insulin to carb ratio and if you are limiting the amount of insulin she is allowed per meal then that is old school 'feeding your insulin' rather than living with d. It will take months to get her stable. Everything right now is a first. First longer walk, first time swimming, playing football, at soft play, when she's upset, first time she has pizza or pasta or potatoes. It is worrying but for a few months she will get through them unscathed at the end in long term means as you all find your feet. Some people need what the 'book' says and others don't and you only find that out through trial and error. Pumps and CGMs are difficult to get a hold of in the UK. Strict guidelines have to be met and I doubt your team will consider them until she has been diabetic for a year at least. You are what we call 'honeymooning' ie, her body is getting used to the change. So, it sounds like you are doing all the right things for her. Take notes on everything. What foods send her high, what activities send her low ect. You're doing great. But we're always here

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It seems like they are very keen for her to have a pump ASAP. We were looking at getting through the initial honeymoon period and then making that decision. Interesting what you say about the upper limit. We basically couldn't give her enough insulin last night for the amount of food she consumed!

I'm well aware of the debate now from the reading I have done and the messages I have received. The nutritionist advice is to eat carbs with every meal as part of a balanced diet vs the gritters (Bernstein) advice of low carb low insulin regime with a more balanced blood sugar level and using ketosis for energy rather than carbs and glucose.

I can see the benefits of low carb and I think it is something we might start to shift slowly towards in the future if we can get my daughter to happily do it and I understand exactly what it means and what it does to the body.

Firstly I think I'm going to go lo carb myself for a stint and see how it feels and make judgement before not following our dieticians advice. I will still eat carbs but was thinking of only ten or so per meal or those present naturally in vegetables.