glucose in urine-possible causes?

[ariane5]

Dd (3) has been unwell lately and urine samples have shown glucose over the past week ranging from a trace to +++

What could cause this? She has been poorly a lot recently with ear/throat infections and has been very tired and had an itchy rash.

Only one of the samples showed wbc and she was treated for a suspected uti but this morning her sample was showing trace of glucose again.her diet is not high in sugar.

What could cause this?

Dd having a bad day today lots of hypos and lots of high glucose levels too.she has slept a huge amount as well.
I am so worried about her.

Have you spoken to a diabetes nurse or GP ?

Hope you are getting advice from the diabetes team.
Make sure you keep notes about BG levels & what food given & when to see if there are any patterns that will help with any changes to insulin dosage.
Are you carb counting? If not make sure hospital teaches you this.

Still not seen diabetes nurse but community nurse popped round but only gave us a folder and a spare inj pen
No actual medical advice about dd.

We asked should we write down everything she eats the nurse said no I've just had an argument with dh as I want to write it all down and he said "the nurse said we don't have to+we don't have time" ??
I fail to see how they can get her dose right if they don't know bg levels and what+when she eats? We r giving her healthy food but we are not experts it may be wrong?
Nobody has explained carb counting but I ordered a book.

Spoken to diabetes nurse on phone she has slightly changed dd insulin to half a unit more at lunchtime and a unit less at bedtime.

Hopefully it'll help

Seriously life will become easier when you are carb counting so you should be being taught about it. Think some hospitals think it is too much to take in at the start but you should have a background basal level & then bolus injection amounts to be given according to your carb:insulin ratio. You can then look at what happens after meals & make adjustments gradually.
Please ask the diabetes nurse about carb counting. Also ask about their attitude to insulin pumps as think this will give you an idea of how forward thinking your team is.

Also carbs & cals app for iphone & there is a book too.

Yes that was the book I ordered, does it mean that I will change dd dose depending on what she eats eventually?

Hi Ariane

I've actually rejoined mumsnet because I'm so appalled at the poor treatment and advice you're getting.

My DD1 is 5 and has had diabetes for 2 years.

You are struggling to cope because it's a devastating diagnosis. For the first few weeks all I could think about was how her little body was fatally flawed. Your DD's health, her very survival, now rests on you getting food, exercise and insulin doses right. You never will get "stability" by the way - there are just too many things that can affect blood glucose.

How you feel right now is perfectly normal. You have lost a robust, healthy little girl and gained a DD who is far more vulnerable. Your DH's reaction is normal too. He actually probably hasn't taken in the diagnosis as much as you have. He's minimising - because the enormity of what has happened and the extra burden of care you have been landed with is just too much for him to bear.

However, your hospital are very badly letting you down.

Nice guidelines state they should take you through a structured programme of education. They are not doing this. Instead they have sent you home with a bag of needles and a hopelessly inadequate supply of test strips.

I thought our local hospital was bad but every day for about 3 weeks after diagnosis our DSN called, checked DDs reading and made adjustments. They came to our house 3 or 4 times over the course of a fortnight to take us through all the many things we needed to know like how to deal with sick days. Has anyone even told you that yet?

You are absolutely right that you cannot hope to get insulin doses right unless you know how much carbohydrate is in each meal.

I'm sorry to say this but there are some dreadful paediatric diabetes teams out there. Thankfully there are also some fantastic ones.

As others have said I absolutely urge you to join the CWD list. I joined in utter despair months after diagnosis with a child who was ill with wild swings between high and low blood glucose and who was utterly miserable. With their advice and support, we got a second opinion, changed hospitals, got an insulin pump. It's still damn hard work but our DD has a relatively normal life and is so much happier.

Sorry for the long essay but I'm utterly furious that this kind of poor care goes on. It's not you - it's them. You, your daughter and your whole family are being let down. Get angry, get informed and move her care to somewhere that can do a proper job. There's an army of mothers on the CWD list who would love to help you. Please let us.

xx

Just some links you may find helpful

Carb counting guide and online course

You can order one of these free for your DD

You can also make an application for DLA for your DD - it might help you by, for example, paying for some childcare to give you a break. The night-testing is pretty exhausting.

Oh and on the writing down what she eats thing - yes you will find it useful - a community nurse will know jack all about how to manage Type 1 diabetes in a small child so I wouldn't pay any attention to her advice. We kept records for the first few weeks -what DD ate and how much carbohydrate. It definitely helped us get doses right more quickly. You can wait until you're a bit less shell-shocked to start doing it though . This is a long road so don't worry about taking baby steps.

I've jut read the entire thread Ariane and am also horrified at the lack of education and support you are receiving. My DS was also dx'd with Diabetes at 3 yrs old. We were devastated and 6 years on I still have moments of immense sadness for him - the burden and responsibility he must carry when his friends can just be children.

Our lives changed - set meal times,struggles with injections etc. We got good hospital support on dx - eight days on the ward with daily visits from DSN and dietician. When home our DSN phoned every morning for a couple of weeks then gradually let us get on with it.

What helped us - carb counting. You can't get insulin right unless you carb count. If you don't have a digital scales which measures grammes, please buy one - you need it. You need to be taught to carb count. Either your dietician or online courses. Keeping notes - of everything! Fill out your log book with every BG, every insulin dose. Then add in food, exercise, periods of inacivity, sick days etc. This is how you will learn the effects of food on your DD's BG, how exercise effects her, it will prove invaluable in allowing you to look back and see what you did last time she was ill, at a party, at the park etc. Please tell your DH you need to do this. Gerard is right, the community nurse knows nothing about diabetes and, in time, you will know more than your GP and DSN. As for test strips - you need to be getting a couple of hundred at a time - you don't want to be running back and forth for prescriptions every week. Get a hypo bag - small make-up bag (anything - ours was a plastic M&S bag for years!) - put in it Hypogel, Glucotabs, glucagon. Take it everywhere with you along with meter and strips. Ask for a ketone meter - make sure you get one and not urine dipsticks - the sticks lag several hours behind. You'll need to check for ketones for unexpected highs and sickness.

Right now it feels like a mountain to climb - you can climb it but take small steps. Be kind to yourself - cry when you need to, sleep when you can! I remember those feelings of fear when DS came home - I was scared to let him out of my sight .... but he was still DS just DS with a wonky pancreas and parents who needed to learn how to be that pancreas. We're still learning and always will, I guess, but life is normal now and DS is just an ordinary little boy.

Please, please, if you haven't already, join CWD. You don't have to post - you can just read until you're ready but you will know that pretty much 24/7 there are a bunch of Mums and Dads who will answer questions, put your mind at ease and give good, safe advice.

I have joined cwd list (I think -was bit confusing when I first tried!).

Carbs and cals book on its way and I do already have scales that measure grammes.dh very against carb counting he said no we won't do it its too 'set' and 'restictive' but I said I want dd to have her diabetes controlled as well as we can.I don't know if he is having trouble with the diagnosis but he is being difficult and dismissive of me.

Diabetes nurse said she may do a home visit tomorrow.

Is it true with dla you have to have had diabetes for 3 mths before you can claim? Dd has other health probs (since birth) so would I claim for those now and diabetes at a later date?

Carb counting is the very opposite of restrictive. It means you can eat what you like instead of sticking to fixed amounts and/or times for meals and snacks.

With DLA you have to have needed the level of care described for 3 months before the award starts, for any condition AFAIK (may be different under the special rules but fortunately that doesn't apply here). So my dd was diagnosed one march. Her dla award was backdated to the June.

I really don't understand what I'm doing at the moment I keep trying to talk to dh but everything I suggest he dismisses saying carb count when dd is much older and can understand that she will have to eat a certain amount if she has had the insulin dose to reflect the carbs she's about to have as he thinks we will end up doing her inj then she will refuse to eat.
He is being really difficult and upsetting me.I want to be doing something to help dd not this guesswork and I am confused by it all.

Arianne It sounds as if your Dh is refusing to accept it almost wishing that if you feed her as normal it will go away or nothing will happen. I hope he manages to possible read this thread or maybe taking to the diabetic nurse might help him to see round things. Will your dd eat knowing that if she doesn't she might become poorly again ? There seems to be some very good advice on here. Good luck with the journey it looks as if its a long one.

If she has her inj before meals she steadfastly refuses to eat.we were doing it after which seemed ok but comm nurse said change it back to before meals again and today she has barely touched her food

Keep it after meals Ariane - ignore the community nurse. Your daughter is a toddler, she doesn't understand that she must eat to soak up the insulin. We had this battle for years and after was less stressful for all concerned.

I'm sorry but your DH is just wrong. Car counting = flexibility = more precise insulin doses = more predictable blood sugars = better short and long term health for your DD.

It's early days for both of you. Get a notebook, write down a list of questions for your DSN tomorrow, take notes, ask her to call and make daily insulin adjustments until things settle a little and ask to see her again as often as you need to until things settle a little and you gain confidence.

CWD MumS are great - and I'm delighted you have joined!

Switch back to insulin after meals. You don't need the stress of trying to make her eat to match insulin that's already been given. Best book I can recommend is Gary Scheiner's book 'think like a pancreas'. You'll probably want the ragnar hannas book too, but I treat that one as a reference book. The Scheiner book is much smaller and you can read it straight through quite quickly. Glad you're on CWD, it will help.

We are getting a ketone meter to use rather than test sticks dd still in nappies due to other health issues so blood testing will be easier.

Just went for a walk I kept panicking the whole time

A blood ketone meter will be much better than urine sticks. Have you been given rules to follow to reduce ketones if she has high blood glucose and ketones reading higher that 1.0 on the monitor? They're usually called 'sick day rules'.

Yes the hosp gave us a load of sheets to read when we left hosp one was sick days info.

Dd was a bit fed up earlier about finger testing so I said to her I'd have mine done it was 4.8 she seemed a bit happier then wanted dh to have his done (it was 5.7) then ds1 said he really wanted his done too I wasn't sure as I didn't want him to not like it but he pestered it was 7.2 before dinner, is that a bit high Iam panicking now as he has had all the same illnesses recently as dd2 and the hosp were adamant a virus was the cause of her diabetes.

Maybe Iam just going mad worrying too much about all dcs

More great advice above! Well done for joining CWD email but don't be afraid to post & ask any questions.( may be worth setting up a separate email account as sometimes there is a lot of email traffic)
Also was going to suggest the book Think Like a Pancreas by Gary Scheiner as well as the Ragnar Hanas book mentioned before.
The best thing you can do is become informed about Type 1 ( although don't feel you have to know everything at once). Then you can ask your team informed questions & hopefully get some sensible advice back!
Not sure about the levels in DS - were his fingers cleaned? Had he eaten recently?Think after food would expect them to be higher.
Maybe repeat it after eating & if not sure ring your team for advice. Hope there's nothing to worry about.

Yes his fingers were clean, I'm probably just being paranoid but he's been bedwetting last 2 days as well.I think I'm just being over anxious?? It was just before his dinner.

I will order the other book you mentioned and ask the diabetes nurse tomorrow about carb counting.

Ariadne, ask your DSN about DS tomorrow - she will hopefully put your mind at ease. Had he had a snack mid-afternoon? It's natural to be anxious - you'll find many Mums admit to finger-pricking siblings now and again! Good luck tomorrow?

Did anyone up the thread or at hospital mention a pump? You're probably overwhelmed just now but it's something to think about. It means one canula change every three days as opposed to 4-5 injections per day and much much more freedom with food, not to mention the fact that it's a tool which will give you much more control! Ask your DSN tomorrow! Even if you don't want one now, sound her out. If she is anti-pump I would go so far as to say that when you feel stronger and more in control, you might want to think about a pro-pump hospital. They really do transform the life of a child with T1.

Good luck tomorrow!

I have been reading a lot about pumps and the continuous glucose monitoring. I think it would give me more peace of mind as I am always testing dd2 glucose level now.

Does it get changed every 3 days at gp or hosp? Is it painful or just under the skin? Can it be tampered with by the child and what happens during the night or at bathtime.

Can you feel it once it is in place?
Sorry so many questions