HELP - VERY CONFUSED!!!!!

[Tracey4Claire]

Hi everyone, I have been looking on the diabetes.co.uk website and have registered to post/read your forums on behalf of my handicapped sister who was diagnosed last week with Type 1 Diabetes.

Claire is 26 and has Downs Syndome. How it all started: After being ill for a few days, Claire was rushed to A&E by ambulance and was diagnosed with Type 1 Diabetes and was suffering from Diabetic Ketoacidosis. She was kept on the High Dependancy Unit for a week and was given a once daily, 10 unit dose of Insulin (Cant remember the name of it, but it's a slow release type of Insulin). Claire was discharged on Wednesday (18/02/12).

We have been informed as to what your blood sugar levels should ideally be, but it has not really been explained to us what action we should take if readings fall outside the "normal" parameters.

Some problems we have with Claire are: a) she has a very limited diet ie there are lots of foods she won't eat and she eats very small portions, b) she is not able to tell us when/if she feels unwell (so its down to our judgement, which is terrifying).

We have been informed so far that, due to her limited diet/small portions, that Claire will not need any fast acting insulin after her meals but that the dose of slow release insulin should be sufficient.

When testing her blood sugars first thing in the morning they have been: Day 1: 2.3 (so her dose of slow release insulin was dropped from 10 units to 8 units). Day 2: 2.9 (insulin dose dropped from 8 units to 6).

On testing after her evening meal tonight (within approx 10 minutes of eating) her blood sugar reading was 14.8. We thought this was too high so we decided to use a ketostix strip to test for ketones. The reading on this showed the 5th colour band out of 6????

Are both these readings due to her not being given enough insulin? What action should we take to combat these high readings? How long should we leave it before re-testing both blood sugars/ketones? When do we seek medical help?

Any information anyone can give would be gratefully received

 

[anna29]

Hi Tracey4claire.
Your sister is extremely lucky to have such a caring sister and family.
It must have been a scary time for you all.
As claire has been diagnosed type1 I am bumping up this post, and am sure some type1's will be along to offer support and suggestions to help.
Also how old is claire? We do have a young persons thread here too,parents there that would happily help too.
All are friendly, caring, supportive, great with advice and tips to help you find your way along.
Will you please let claire know she isnt alone and neither are you and your family.
It can be quite scary and overwhelming to begin with, but with time you do and will find your feet and become confident in assisting your sister with her newly diagnosed condition.
She will adapt gradually and so will you and your family.
Living a happy and fullfilling life, enjoying great times together.
Do let us all know how claire is and how things go.
Much love and thoughts.
Anna.x

 

[ladybird64]

Hi Tracey and a big hi to Claire as well

As Anna has said, there should be somebody with type 1 along to help you soon but I just thought I would mention something in the meantime.

I have a daughter with a rare syndrome, she is 21 and is a type 2 on insulin and oral meds. It is really sad that sad that your sis has been discharged without the family being given the info that you ned to help her but all too common. I'm not sure if Claire has any services from Social Services (if you see what I mean!) but our borough has a Learning Disbilities Health Team attached to Social Services and they were very good.

My daughter no longer lives at home but she had a learning disabilities nurse who used to visit every few weeks, check her weight, discuss her meds etc and acted as a very good and supportive liason between ourselves and the others medics such as GP, Endocrinology Dept etc. You and Claire would still be calling the shots but as you probably know, it isn't always easy to get productive appts with health professionals so maybe you could see if there is any support you could get for yourselves in this area.

I'm fairly sure that even with type 1, testing is done before and after meals, usually at 2 hours after eating so the ten minute test might not mean much. The ketones sound a bit worrying however so if you are nervous, maybe ring NHS for advice.

I hope one of the lovely type 1's answer your questions soon.

 

[Jen&Khaleb]

Hi, my son has Down syndrome and T1 diabetes. Apparently the rate of T1 diabetes in people with Down syndrome is 1 in 50 and I know of 3 other cases (now 4).

Your sister may well be in the honeymoon stage of diabetes. She may still be able to produce some of her own insulin at the moment but this may change in time. Any blood test taken shortly after food could be a bit high and most people using insulin take a before meal test and then a 2 hours after food test. I also test before I go to bed at night.

Ketones are produced when there is not enough insulin for the body to use glucose as an energy source and fat is burnt instead. The by-product of burning fat is ketones and they are acidic in the blood. This is what happened at diagnosis (DKA). I use a blood ketone measure but you need an Optimum Exceed meter to get this result. I'd think having 5 of the 6 levels on a urine strip showing ketones the level would be very high and DKA may already be in issue. You need to contact health services.

Diabetes is a balance between food/exercise and insulin. Other factors like hormones, stress and illness also have big effects on levels. Mostly it is trial and error to find the right balance but it would be worthwhile to have access to short acting insulin for times when levels are too high.

My son also has some eating issues. He does eat adequate amounts but quite soft food and a little bit limited in variety. He doesn't really drink either but his food is quite liquid so I suppose he doesn't get very thirsty.

Well, I'm happy to help as will many other's here on the forum.

 

[Tracey4Claire]

Morning ladies, and thank you very much for all your help and support. It's very reassuring to know people who have been/are going through this early confusing stage of diagnosis.

To answer some of your questions:

Claire is 26.

She has been referred to the Learning Disabilities Team and we are waiting to hear from them - I am eager to find out what assistance they can offer.

We phoned the Diabetics Ward of our local hospital last night when she showed ketones present but we were only informed to "keep an eye on them" - not very helpful.

The blood/ketone measure sounds like a good idea so I will enquire about that when we go to the Diabetic Clinic on 1st Feb.

FYI, her reading this morning were:
Blood: 3.4
Ketones: colour band 3 out of 6 (which states its in the "ok" range).

Thanks again for your messages and any future advice/support you will give.

Tracey xx

 

[Jen&Khaleb]

Hope you get a bit more assistance on your next visit to clinic. With low blood sugars I imagine you will have to reduce the insulin some more but having ketones would be a sign that she needs more Carbohydrates. You might be able to find some strategies to introduce meal routines or sneaking carbs into things she does eat. Milk and Milo is a good way if she likes that or I buy Glucose powder and put it on other foods for times when I need to treat hypos or when my son is unwell and not wanting to eat.

It isn't easy at the start and the intellectual impairment can make things more difficult. Khaleb was diagnosed very young so he has only known that he gets a finger prick before he eats and insulin injections. He also goes and gets the scales and puts his plate on top to get his food weighed and carb counted.

I am in Australia and because of intellectual impairment Khaleb is not elligible to apply for or purchase an insulin pump. I don't know if this is the case in the UK but just thought you should know.