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Need information for my niece

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spamvicious

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Hi guys,

First of all apologies for what will be a long post below.

On Tuesday of last week my 12 year old niece was advised to go to hospital after a urine infection showed signs of diabetes. She was diagnosed as Type 1 after the blood sugar level was 35. Izzy is autistic and while she is very articulate and intelligent she is very scared of pain and will go into a absolute panic when she knows she has to have a finger prick test or insulin. She is still in hospital as they nurses and diabetic team are unable to get her sugar levels under control and they also need to feel confident that she and her mum can administer the insulin and do the tests etc.

Izzy is getting a little better but every day it can go either way as to whether she will accept what has to happen or she physically has to be held down to have the injections. The issue is that the small ward she is on has general nursing staff who are constantly changing shifts and are perhaps not the best to be helping her through this. The diabetes team are visiting once a day but have spoken twice about how the nurses are using the wrong needles which is causing Izzy pain. Also Izzy was getting used to the insulin pen but they stopped using it as one of the nurses thought it was broken. The dietician visited on Friday and spoke to Izzy for two hours and Izzy picked up on the information very quickly.

So I guess I just need some advice. I'm the one asking as my sister is a technophobe and is generally pretty overwhelmed as you can imagine. I've seen lots of information about glucose monitors, pumps and smart insulin pens but I have no idea what we can ask for from the team. At the moment they are using an Accucheck fast clix pen and Accucheck meter. Also should we be worried about how long its taking for her sugar levels to get under control?. Initially they were using a ratio of 10 carbs for one insulin point. Now they're using 7 carbs to one insulin point.

Thanks
 
Welcome to the forums @spamvicious. Lots of virtual hugs to you, your sister and your niece at what must be a very difficult time.

As regards insulin amounts, everyone is different, so it's normal to take some time to get someone's levels under control. They also prefer not to lower levels too fast because that can cause damage. And it's usual to gradually increase the amount of insulin rather than start too high, so as to avoid hypoglycemia.

So, I think your family will probably in a very good position to ask for a pump and a continuous glucose monitor, though both have to be inserted and am not sure how well your niece will cope with that? Also, her diabetic team may want her to get used to insulin pens and glucometers first, because they are the back up when either pump or cgm fail. The sad thing is that injections are much more painful when done by someone else rather than yourself. They can also sting a bit if the insulin is straight out of the fridge, which may be the case in the hospital.

There is a parent and children subforum here, which may be useful, both the child section for your niece and the parent section for you and/or your sister.
Diabetes Forum • The Global Diabetes Community

You could have a search for autism there. There are also a number of threads about children reluctant to inject.

As regards your sister being a technophobe - it's worth using the technology now available for young T1s, though your niece may be old enough to handle it on her own if she gets past the needle phobia.

Good luck to you all.
 
Hi. It must be so difficult dealing with ever changing nurses. Most of use use 4mm needles which are the smallest available. In previous years 6mm and 8 or even 10mm needles were used. There are various places to inject but the backside might be OK as you can't see the injection. I use stomach and outer thigh. The nurses are at least suing carb ratios and now with 7 to 1 it should help reduce BS. My ratios vary greatly between morning and evening which adds to the difficulty. I assume two insulins are being sued (Basal/Bolus). If so do you know whether the Basal has been adjusted? I find it difficult to understand why the Drs can't get the BS under control. It may take 2-3 days and need various insulin adjustments but in the end insulin works.
 
Thank you for the replies. She is being given "fast acting" insulin before each meal and then "slow acting" insulin before she goes to sleep. She went to sleep last night and her BS was 9 and then when she woke up it was 12. However they have decided to discharge her despite the BS not being under control yet. My Sister is having a zoom meeting with the diabetes team this afternoon and my mum and I have been asked to be present.

I am going to ask about getting a continual glucose monitor in the meeting as I feel my niece meets the NHS criteria given that she is autistic. I don't know anything about the pumps though so don't really know what to ask. I am basically the one who is having to learn all this as both my sister and my mum find it difficult to retain information. My sister is now able to give the insulin but she was trying to take the blood sugars 3 or 4 times with the same blade not realising it would be blunt. The team are only going to allow my niece to come home if my sister lives with my mum for at least the time being.

I went to the chemist yesterday to pick up all the stuff. I had to google most of it to know what it was. The only thing I'm unsure of is the ketone test strips. Can they be used in the glucose meter or do we need a separate meter?.
 
spamvicious said:
I went to the chemist yesterday to pick up all the stuff. I had to google most of it to know what it was. The only thing I'm unsure of is the ketone test strips. Can they be used in the glucose meter or do we need a separate meter?.
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Most of the kit you need (testing strips, needles, insulin etc) should be supplied or prescribed by the clinic. Ketones strips can either be used in a blood testing meter (which your clinic should give you or give you a script for) or can be bought as urine testing strips. In your position, as your niece hates needles, I'd be tempted to go for the urine testing strips. Although less accurate, in my opinion they should be accurate enough to tell you when you need to worry about DKA. (Disclaimer, in 51 years of T1, I've never had a DKA.) Blood testing ketone strips are specific to a particular meter, and your clinic may or may not have given you the meter that they work with.
 
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