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glucose in urine-possible causes?(158 Posts)
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?
Terrified-been to gp dd blood sugar level was 25. What could this mean? Waiting to go to hospital now
Have you looked into type 1 diabetes?
It sounds like she has developed diabetes, which might take some time to get your head around. The staff at the hospital will help you to learn about how to manage it. Take care and let us know how she is when you can.
It does sounds like Type 1 diabetes, but I hope there is another explanation!
My DS got Type 1 aged 4. Complete shock, but life goes on, it has to. You will be on an enormous learning curve and you will learn to manage it.It is manageable. Never a good time to develop this condition, but with young ones, they grow up with it and take it as the norm and adjust their lifestyle. Developing it as a teenager has other challenges. While I would give my right arm to take this condition away from my DS, I am thankful he developed it at an age where I can influence him to think about good control and adjust to life with insulin administration, rather than start this journey with a teenager who thinks they may know better and who understandably just want to do what their friends do.
If the diagnosis is Type 1, then it sounds like it was caught early, this is down to your vilgilence.
I wish you all the luck in the world as you adjust (if diagnosis is Type 1). There are much support groups on the internet if you want to find them and your hospital/consultant/diabetic nurses are there for advice/support. I'll watch this thread and will chip in if i can offer any comfort or if you have any specific questions.
Type 1 is on the rise in the 0-5yrs group - noone knows why. No family history with us, but a virus that triggered it!.
Just got back from hosp dd has type 1 diabetes.I am devastated as she already has significant health problems.
Dh is with her as I am still bf ds2.she was quite poorly but has got iv in and has had insulin.
I don't know what to do iam a complete mess
Oh bless you. You and she will get through this and your dd is probably young enough to adapt fairly well. You probably will feel terribly weighed down by this at the moment, this will eventually pass. My dd1 was diagnosed with a serious and very rare illness 19 months ago. It's still hard, but life is bearable now. Take time to let yourself get used to how things are now.
I just can't understand why my dcs are so unlucky with their health they have so many things wrong it is totally overwhelming.
I feel so desperately sad for dd she is only just 3 and has put up with a lot already and now this too.
I need to stop crying and toughen up for her.
I am sorry it must be very hard to deal with this on top of lots of other health problems. Not a good start to 2013. You need to allow yourself some time to come to terms with it and get your head round it, and it will become easier. I expect your DD will feel better in herself when she is no longer dehydrated and her blood sugar has returned to normal. I hope she doesn't have to stay in hospital for too long.
sounds like type 1 diabetes has she been really thirsty in the night and peeing a lot she is in the best place now
Not excessively thirsty but def drinking more.
Sleeping lots recently though and v v irritable and just 'not right'
A diagnosis like this is a terrible shock and you need to give yourself space to process your own emotions as well as looking after your DD. It isn't fair but it is manageable and you will, with time, get your head round it. Managing the diabetes will become a normal, accepted part of your daily lives and it will feel OK.
I hope the hospital manage to sort your little one out and get her home quickly. You can ask them to accommodate you and the baby staying with her if you want to. I had two weeks in with DD1 when DD2 was 4 months old and EBF. They put us all in a side ward together and looked after all three of us really well.
If her blood sugar was 25 that sounds like you caught the diabetes pretty early, which is good.
My ds felt back-to-normal again very quickly once the insulin got working and we were home in 24 hours. At first the whole insulin/sugar/food thing feels overwhelming but you get used to it pretty quickly.
The Children With Diabetes email list is very good for advice and support - CWD forum
Def caught it early which will have stopped her from getting dangerously ill. When i got diagnosed with type 1 as a kid the doctors kept missing it ... my blood sugars went into the high 40s and i nearly died :O
Treatment is SO much better nowadays too. Tiny insulin needles and also no such thing as a diabetic diet anymore. Anything can be eaten so long as insulin is adapted accordingly. Also she can get an insulin pump if you want which people rave about!
Had a tough day lots of v low/v high blood sugar levels.
Dd being so good and so brave
Poor little thing. It must be very hard for her to understand.
I hope they work out her doses very soon and it all settles down a bit.
What other health problems does she have?
Dd also has Ehlers-danlos syndrome hypermobility type, it is genetic (all 4 dcs have it ) dd has joint pain,frequent dislocations, hernias, severe constipation and fatigue, she still uses a buggy all the time. Also has bad food allergies (milk, egg and shellfish).
Other dcs have complex health needs most conditions relating to the eds (dd1 very severe).
Diabetes on top of all this just feels like one thing too many
If she has EDS then it may be a new symptom rather than diabetes. Try and organise an app with your consultant/pead ASAP. Have you asked on the EDS forum/website for advice? I know a few EDS children who have blood sugar issues so they may be better able to advise.
I did not know eds could cause blood sugar issues? The drs at hospital know dd has other health issues but they have not said it could be due to eds.
I will see if I can find out more about it
blondefriend might well have a point because your DD's symptoms don't sound like they were typical....i know i had a raging thirst that nothing could make it go away, and i started weeing loads and wetting the bed!
The drs were surprised actually how 'well' she seemed to be even when blood sugar went up to 36 and she didn't have very high ketones like they expected.
She has been weeing a huge amount today though gallons of it.the drs are saying they are 100 percent about diagnosis though so I suppose I have to trust them I do not know much about diabetes as yet.
It was 18 before she went to sleep and has been hovering around 12 most of day except for once when it went down to 3 and then back up to 21 after she had some juice.It seems to be very up and down.
Sorry to hear about your DD's diagnosis of Type 1. My son was diagnosed 2 1/2 years ago & it was a real shock . At times it is not easy but it does become the new normal very quickly. It is good that they have diagnosed early before she did become very poorly.
Think the medics often do an antibody test for Type 1 as well as the other tests.
It must be very stressful for you with a little one as well as the other health problems to contend with.
I would second the advice about the CWD email list. There are some lovely people on there & nearly always someone around to give advice or just to chat to. JDRF website also very good resource - has your DD been given a Rufus bear from JDRF at the hospital.
How is your DD coping with it all? It is a very stressful time for you & really feel for you but things will get better & you do learn to live with it.
What regime is she on ? My son started on MDI ( multiple daily injections ) but now has an insulin pump & that has made things so much better. Think pumps are particularly helpful with little ones.
Dd is doing ok, she seems a bit confused as to what is going on and its hard to explain as she's so little and also not feeling well a lot of time (v.sleepy and has a uti as well).
She has been having an insulin injection just before each meal.
Today we will be seeing the diabetes nurse.
It must be very hard with such a young child starting with T1. My DS was 8 when diagnosed so he could understand what was happening.
At some stage it would be great for your DD to meet up with another family. Through CWD we have met some lovely families with T1 kids so great for them to see other kids doing the same thing. There is a CWD conference called Friends For Life every year in Windsor or Glasgow which is fab.
Whereabouts in the country are you?
Also JDRF hold Discovery Days around the country which are really interesting & an opportunity to meet other families.
We are in Harrow nw london. Dd not having a good day blood sugar keeps going low.then she had insulin before lunch but was refusing to eat and I was panicking.
I feel a bit useless just wish she was ok
is she on novorapid? if so that can be taken immediately after a meal - that's when i usually take it - so if she doesn't eat it all you can adjust the dose accordingly
have the docs mentioned the honeymoon period?
Are you still in hospital? Are you getting good support from your diabetic team?
It is tricky in the early stages ( well actually a lot of the time but you will start to feel more confident). Just make sure you are getting good support & advice.
Yes we are still in hospital.she is having novorapid but before her meal she hates the inj then gets upset and refuses to eat in protest.
We were meant to see the nurse today but she was off sick.we will be seeing a dietician tomorrow at 2pm though.
I was just confused as dd has insulin before meals but then she gets hungry in between if she has a snack I don't know does that mean she will need another injection or are some foods ok to have as a little snack and you don't need more insulin?
It's a little while since we have used injections as on a pump now but we used to have basal injection & then bolus injections for all meals apart from any carb snacks that were less than 10 g of carbs. Check with your team though.
Now we are on the pump we bolus for any carbs at all.
Hopefully the dietician will talk to you about carb counting if they've not done that already. Have you seen anyone from the diabetes team today?
Definitely try to talk to your team about the possibility of an insulin pump as it has certainly made our life easier & I know lots of other parents with little children have found them much better. DS used to hate injections & also makes it easier to be more flexible with food. We used to do a reward scheme for DS for injections - might help I guess.
Really feel for you at the moment as there is such a lot to take on board at this stage for all of you. I would highly recommend the book by Ragnar Hanas - Type 1 Diabetes in Children, Adolescents and Young Adults: How to Become an Expert on Your Own Diabetes
It is a big book but it is easy to dip in & out of & is full of great info.
You need to make sure she is seen by specialists in diabetes not just general paediatricians. It matters and you mustn't allow yourself to be pushed into settling for less for fear of upsetting people.
You need to speak to specialist nurses who can explain everything 100 times if that is what it takes and your DD needs to be seen by doctors who really understand all the ins and outs of diabetes, not just the basics.
Hi ariane5 - read this post and really hope you are all ok. Our son was dxd when he was 8 and now 10 - for 9 months he was on mdi and now has a pump. With mdi we adjusted basal levimir according to exercise and also split to two times a day. Honeymoon started about 10 days post dx. Good snacks between meals meals on mdi were baby bel cheese and other carb free stuff but once we got hang of carb counting he also had injections. Cwd great site as well as FFL.
So sorry to hear of your daughters diagnosis.
My son was diagnosed aged 2, he is now 5.
If your daughter is refusing to eat then they should look at giving the injections after she eats.
You need to be under the care of a diabetes team and insist they teach you how to count carbohydrates and adjust insulin doses.
A pump is the best treatment - maybe have a read about them.
We live near you in Watford, we were under their care until we moved to UCLH in London. They are one of the best teams in the country and support pumps. As your daughter has other health problems if you don't get the help you need you could ask to be transferred- GP can do that.
Please also have a look for Children with Diabetes and join the online community. It saved my sanity and I have met some of the most amazing families and children some of whom have posted above.
Knowledge is power in diabetes and it helps so much.
For now you are in the middle of the most awful nightmare - you need to allow yourself time to cry, scream and grieve.
Please let us know how you are getting on .
I do feel a bit annoyed that we havnt seen a diabetes nurse yet but I suppose with it being new year things are a bit up in the air at hospital.
Was upset today as dd got unwell with low blood sugar and nurse wanted to give her insulin then lunch (it was 3.7 and dd was floppy and eyes rolling) yest when that had happened a diff nurse had said give her sugary orange juice to raise sugar quickly but today it was different and I was confused but told the nurse no, we would do what we did yest give her sugar not insulin then lunch.
Iam so confused and anxious about it all
3.7 and any number less than 4 is a hypo.
You need to give her fast acting sugar-
Preferably dextrose tablets- we use jelly babies.
You can use orange juice but it is not as fast.
You need to give 15grams of sugar and then retest after 15 mins.
Never give insulin when hypo- so you were right- well done.
If a diabetes team don't see you tomorrow- and it's not good they have not seen you yet please transfer yourself to a different hospital.
Dh was a bit annoyed at me questioning the nurse when really I don't know anything about it it was only because yesterday the same had happened that I thought it seemed wrong to give insulin when blood sugar so low.
Glad I trusted my instincts though.
That is terrible if you haven't seen a diabetes nurse yet regardless of it being New Year.At diagnosis we saw a specialist diabetes nurse as soon as we got the diagnosis & every day in hospital & also saw the consultant every day including the weekends. You need support & information at this time in your diagnosis. Sadly not all general hospital staff know their stuff about Type 1 diabetes. Very poor advice when she was 3.7 - especially as she was acting abnormally! Well done for questioning the advice but you shouldn't be put in that position at this stage.
We use dextrose tablets or mini cans of coke to treat hypos. Fruit juice will work but isn't as fast.
Agree with everything jmf has said. Hope you get better support tomorrow! Please also do get yourself onto the CWD email list.
There is a clear lack of understanding of diabetes management amongst the ward staff. What the nurse wanted to do was dangerous and you did the right thing. Don't be afraid to speak your mind if you need to.
You need to throw your toys out of the playpen a bit tomorrow and make sure you get a referral for specialist advice.
I wonder if Diabetes UK can advise you about the best team to be referred to in your area.
We have seen a consultant yesterday and today but both times all he has said was "blood sugars are up and down that's normal at this stage we will carry on with what we are doing".
Managed to beg a couple of leaflets off the dietician today and she will see us tomorrow but I've been reading up on what I can find.will def be insisting on some proper help tomorrow I just want somebody to sit with us, explain everything then go through all the questions I have.
Definitely UCLH is regarded as being one of the top hospitals for paediatric diabetes. Prof Hindmarsh & the whole team I believe are excellent. Know a number of families who have moved from their local care to there after very poor care elsewhere.
I will be demanding some help tomorrow I can't keep relying on the leaflets I've been given and the booklet that came in the accu chek pack I need a real person to go through everything.
Absolutely! Hope you get progress tomorrow.
Did you see a diabetes nurse??
Ds2 was diagnosed last year aged 4. He would have an injection after each meal, once we'd seen how much he'd eaten. And then up to 20g carbs as a snack mid-morning and mid-afternoon. And carb-free things otherwise (meat, cheese, veg).
at the nurse wanting to give her more insulin when she was hypo! Any number under 4.0 you give 200ml juice or 3 jelly babies, wait 10 minutes after she finishes and test again. And if she is still under 4.0, do it again.
Tell the nurses you want injections after meals and if they don't agree they should ask the diabetes nurse and come back when they've checked!
How did you get on today? Hope you've had some more help & advice!
Re finding the best teams in your area. There are some reviews on the children's diabetes teams clinic comparison site here
I agree about looking into UCLH. We don't live in London, but had dd's care transferred there. It was like a whole different world. I'm really sorry you're having to deal with this. Dd was all over the place in the early weeks (anything between 1 & 30!) You'll get there, but you're doing the learning curve just now. I hope the care gets better.
Dd seemed a lot brighter yesterday and more herself.
Still not seen a diabetes nurse (she's off sick) but saw a brilliant dietician.
Dd had a hypo (2.7) in the aft though and it was a bit scary.also she has been hungry at mealtimes but has the inj then goes absolutely mad and refuses to eat which makes us panic so we asked abt inj after meal instead and they agreed so we feel happier abt that now.
Really hoping to see diabetes nurse today.dd had bad hypo again in night so they will slightly lower her insulin dose as well.
Great your daughter is feeling better.
Are you seeing a doctor every day to explain everything to you if the nurse is not available? Who is making decisions about her injection amounts & are they involving you?
Did the dietician start to talk about carb counting?
When do they think she can go home?
Sorry for all questions but just want to make sure you are getting the support & education you need.
Have you seen a diabetes consultant? Or anyone who has training and experience in diabetes? I can't believe how long you're having to wait! We went into hospital Thursday morning and came home Friday night, all trained up to manage, with a diabetes nurse on the other end of the phone.
Have you talked to your EDS consultant? I had a really quick google and there do seem to be links with EDS and hard-to-control blood sugars. Have they done tests to check whether she is producing insulin (a c-peptide test), or whether she has the antibodies produced when the immune system attacks the pancreas (islet cell antibodies and GAD 64 antibodies)? I realise this is getting a bit technical but sometimes doctors need a prod. FIL spent 4 months trying to treat himself for Type 2 diabetes before the docs finally worked out he actually had Type 1 (totally different cause and treatment). And if there is a chance she doesn't have diabetes you want to know now!
Anyhow, I'm glad they're doing injections after the meal, and adjusting her doses. Hypos are scary to start with!
Finally saw the diabetes consultant this aft.he mentioned they would be doing some blood tests.we saw the dietician again but diabetes nurse still not there so another nurse went through a few things with us.
They couldn't let dd home today as she had a very bad hypo in the night but throughout today blood sugar has remained around 13-15 apart from before dinner when it was 9.
How many times a day is too much to check blood glucose? I feel like when dd is home that I will worry and do it too much just to check she is ok and I don't want to make her fingers sore.
I want her home but I think iam actually scared of her being at homee now and coping on my own as have the other dcs and I'm terrified.you should leave hosp when you are better but she won't be better and I am nervous.
We test anything from 8-15 times a day now which is probably far more than when first diagnosed. This comes from realising how variable the glucose levels can be. In some ways the more you test the more information you have but obviously there has to be a balance. You may have a blood glucose in range say at breakfast & then again before lunch but without ever testing in between you might not realise that levels are maybe spiking in between.
Also DS has poor hypo awareness so can't rely on him to notice.
We always test before meals & bolusing/injecting but test lots in between & also through the night depending on all sorts of factors!
( we also now use a continuous glucose monitor which you may have heard about & this measures glucose levels in the skin all the time via a sensor & transmitter, although we still do plenty of finger prick tests as these are more accurate for bolusing etc)
As you get used to things you will get more of a feel for it. It is daunting going home but you will start to settle into a routine which will be a lot easier at home. She will be happier & probably get better food & start to get back into her own routine.
Make sure you are confident about how to treat hypos and hypers. Make sure you have contact details for someone at the hospital for advice ( including out of hours)
Make sure someone is going to be in touch with you daily at the start to advise on doses as there will probably be lots of gradual changes to make.
Thankyou kp.I just suddenly feel like it is all too much to take in. Dd has a nap in aft still but I keep thinking what if she has a hypo when asleep etc or if I'm out I know I will keep having to check.
She gets irritable and angry when starting to have a hypo then very drowsy but how will I know if sometimes she is just grumpy-will I panic everytime thinking glucose levels dropping.
Will we get given hypostop gel for at home? Or glucagon injections?
I have not heard of skin glucose monitor-where do you get them? Are they just sticky or a needle in the skin?
Sorry for so many questions
Try not to be too worried - it is a huge learning curve, especially in the early days but sadly with type 1 you do just have to get on with it. Concentrate on the basics - the rest will come.Look at getting the Ragnar Hanas book as you can dip in & out of that but means you always have info at hand.( Would seriously recommend you get onto CWD email list when you are home - there is a specific toddlers list as well & you will find lots of lovely people who have been through all this & will have great advice & experience. You can feel very isolated when you get home & it is great to know there is a place where you can chat with others who 'get' it. Also there will no doubt be others in your area who you might meet up with for a coffee & real chat)
You should be issued with glucagon injection for severe hypos at home( we've not had to use ours yet but always have one & so does school). Think generally hypostop is advised against now as if not able to take things like dextrose or lucozade due to being unable to swallow then hypostop also potentially dangerous.
Some hospitals will fund Continuous Glucose Monitors but many won't. We have bought our own for now but are hoping to get funding for the sensors as they are pretty costly. There are 2 main ones - Dexcom & the Medtronic Enlites which are used alonside the Medtronic pump. They are like a filament in the skin but put in with a needle type inserter.
Has the hospital talked to you about pumps at all?
I carry the gel and the glucagon around in my bag, never used either but they make me feel better! To start with I'd be watching ds2 all the time, wondering and panicking slightly - I'm a lot more relaxed now!
What are you using for hypos? We use apple juice (200ml cartons) because I have the only 5yo on the planet who won't eat sweets. But you can carry lucozade/jelly babies etc.
We test 8 times a day routinely, more for hypos/lots exercise/days out/illness/r in the month. Averaging 12, I think. His fingers are fine.
It is a lot to take in, but you will be an expert in no time at all. You will also make mistakes (completely forgetting the meal injection, overdosing, underdosing ...) and your dd will be ok.
Get yourself on CWD, you can email day and night, someone else will be up too!
Dd was allowed home this afternoon.we were shown all medicines and a nurse went through it all with us and we got a glucagon injection pack too she showed us how to make it up if we ever need to.
Dd seems ok, she's watching a film and having a little snack.she's very happy to be home.iam terrified though.
That's good news!
Try not to worry too much. You've already shown that you can cope by intervening when the nurse was doing the wrong thing. You are intelligent and responsible and your DD will be fine in your care. In no time at all you will be taking it all in your stride and it will feel normal.
I'm glad she's happy to be home. Just give yourself some time and space to work through your own emotions about all this too.
I feel completely overwhelmed, I can't stop watching dd.she has had a couple of tantrums and I was worried it was a hypo but her levels were ok both times (10.2 and 12.6) I know I am going to turn into a manic finger pricker as I am so worried about her.
I am still a bit nervous about the injections, after her dinner dh was going to do it but dd cried and wanted me to so I had no choice and I really didn't want to (I've always had problems with needles) Its not as bad as I thought but I still don't like it.the finger pricking I'm fine with but not the injections yet.
On the positive side dd had a good dinner (much better than in hosp she hated the food) she ate lots tonight, oven chips,red pepper, cucumber, sausages, pasta, strawberries and soya natural yogurt so I'm pleased she has her appetite back.
I just hate the constant uneasy feeling.I keep wanting to cry I was asking dh earlier if perhaps they got it wrong and she will get better miraculously, I don't even fully understand how this happened all the drs said was a virus probably caused it.they did bloods for antibodies but no results yet.can you ever be misdiagnosed with type 1 diabetes? Or can the pancreas ever repair itself?
Glad you are home.
All I can advise is take things one day at a time.
If you need to cry then please cry, scream, shout, whatever.
Don't worry about doing too many tests- we test loads- up to 20 a day but the information is helpful and keeps my son as much in range as we can manage.
I'm relatively local to you- if you would like to meet up for a chat/ coffee/ cry or would like your child to meet someone else with diabetes send me a message. My son is 5.
Please go to the CWD website and join the online children and toddler lists. It took me a year to find them properly and it has been a lifeline.
That's great you are home. After our diagnosis it was such a relief to get home & get normal meals as the hospital food was so rubbish!
You will feel worried but just take things slowly & a day at a time. If you are worried about her levels then test.
It is quite normal to feel so upset about it & at times even now I still very sad about it. I went through a lot of those feelings of disbelief too as it was such an unexpected diagnosis & even now it still catches me sometimes. That's why the diabetes on line community is such a great thing as a lot of us really can understand how it feels whereas friends although sympathetic & kind will never quite get it.
Hope you have a good night tonight.
You'll probably go through all sorts of feelings about this including anger, guilt, denial and sadness but they are how you will process this new situation and acceptance will be the end result.
You have to question it. That's your job and seeking answers is really important.
Allow yourself to cry and shout and scream if you need to. When my DD was diagnosed with ASD (a different member of my family has diabetes) I used to cry real tears while cutting up onions or cry in the shower because those were ways I could let it out without anyone else realising.
For me information was the key. It gave me a way to feel more in control. Maybe that will be the same for you too.
That's great you are home. After our diagnosis it was such a relief to get home & get normal meals as the hospital food was so rubbish!
You will feel worried but just take things slowly & a day at a time. If you are worried about her levels then test.
It is quite normal to feel so upset about it & at times even now I still very sad about it. I went through a lot of those feelings of disbelief too as it was such an unexpected diagnosis & even now it still catches me sometimes. That's why the diabetes on line community is such a great thing as a lot of us really can understand how it feels whereas friends although sympathetic & kind will never quite get it.
Hope you have a good night tonight.
Oops posted twice! Sorry
Checked dd at 12 and 3 and she was ok blood glucose not too bad (16.3 and 13.1). I still can barely sleep but ds2 is unwell too with a sore throat+temp so he has been crying and hates his cot tonight.
I am finding it hard with dh-if I get worried and want to test often he gets annoyed with me saying dd is ok/all the test strips will be wasted etc and that she's not hypo just sleeping/tired/having a tantrum etc I know he stayed with her in hosp not me so prob can tell better than I can but I can't help it I NEED to test so much as iam petrified if I don't I will miss something.
If I test and levels ok I feel happy on my own with her if he says not to then I feel like I'm too scared to be with her.I love her so much I want to play with her, sit with her and just be normal but she terrifies me.In hosp when she had a v low hypo I got to the point where it took a while to come up the nurses looked concerned and I suddenly wanted to open curtain and run I didn't want to see if anything worse happened.I feel like a horrible person admitting it but iam scared of being on my own with her. Iam trying to tell myself that at least if I'm worried I can test (but dh makes me feel guilty abt it) so I can immed see if level ok or not.
I don't know how my mum manages, my sister has epilepsy and she must be on constant alert, at least there's something I can test to see how Dd is, my mum can't do that with my sister so I suppose that would be a lot harder.
I thought it was hard enough already with all dcs medical problems, appts, worrying and the big med bag we had to take out everytime we went anywhere now it seems not just difficult and daunting as before but completely too much for me.I don't want dh to return to work I simply can't cope with all 4 dcs and their problems alone now I was pushed to my limit before now I'm way over it
It is very early days and you are not a horrible person for being scared. As you get more used to managing this condition you'll feel more confident and need to test less. In the meantime, even if you're testing a bit more than necessary, your DD is still at home with the person who can care for her best.
Try not to think of the future including this massive monster pushing you over your limit all the time. It will get smaller and a lot more manageable and you will cope.
Have you joined the CWD website like jmf suggested? I think it could really help you.
Do you have a sympathetic friend or relative who could come and stay for a while after your DH goes back to work?
There is nothing wrong with doing tests & no such thing as wasting strips. I guess because you weren't in hospital all the time it will be much harder for you at the start but as you get used to seeing the results you will become more confident. We still all have moments of feeling out of control with diabetes!
Does your daughter recognise any symptoms when she is hypo?
When is the hospital team going to be in contact with you to discuss any changes to levels? Hopefully they are in contact with you.
Dd is still doing ok, but ds2 has been really ill and will probably need to go to out of hours gp or a+e he can't keep milk or medicine down and has v high temp and sore throat.It is the last thing I need.I want to be at home with dd getting used to things but ds is still bf so I have to b with him.
Ds2 a bit better now after having nurofen and keeping it down.
The ward gave us numbers to phone if we needed help as diabetes nurse off but we r hoping she is back and in contact tomorrow.
Nearly ran out of strips (they only sent us home yest with 20 so went and had to buy some till get pres)
We will be going to dr in morn to get a prescription of everything so that we have plenty of spare bits.
Dd blood glucose was 15 before lunch I was worried it was a bit high but she's having a nap now so maybe it'll creep down as she sleeps as she had her injection after lunch she has 1 unit after brek 0.5 lunchtime 1 again at dinner and 2 units of a different inj at bedtime.
Iam exhausted.ds2 has not slept as has a really high temp.
I don't want to be this sleep deprived as I worry about making mistakes with injections.I have given in and come downstairs to make tea as ds2 was crying and I didn't want to disturb dd2.
Luckily my mun has dd1 and ds2 at her house, at least they won't be disturbed by either the baby crying or dh alarm going off at 12,3 and 6 to do dd blood sugar.can't wait to actually see the dr or nurse I think we need more diet advice maybe thatll help us prevent hypos as that's why they want us checking dd throughout the night.
I can't believe how tired iam my eyes are stinging and puffy and my bones ache I have not slept.I lost half a stone between mon-fri last week and I feel awful.I really hope things start to get better soon
Hugs to you.
My DS was diagnosed type 1 when he was 8 and my DD had tonsillitis every month from age 4 till 12 years when she had her tonsils out. Trying to cope with everything was really hard. I suffer with insomnia anyway which I still find is the biggest problem. Try to write any new information down just in case it doesn't sink in when tired. Get your husband involved as mine still doesn't really know what to do and my DS is now 32.
Keep talking to other parents it does help.
Thankyou, it is so helpful to know that there are people who understand as I felt isolated before due to dcs problems but this last couple of weeks have really upset me and made things so much worse.
I feel bad for complaining.dd2 is being so brave unlike me .
Oh you poor thing so much to cope with. Hope ds gets better and I am sure that the diabetic nurse is used to people asking for help and advice when needed ....Its new to you. Hoping you manage to get a bit of rest today.
Hi ariane5, thinking of you. Very hard time for you. Try to get some real life support.
My SIL has type 1, came out at about age 8. She now has two beautiful children and manages her condition fine.
It will improve.
It is hard to see your child going through an illness like this. If you are in Facebook, there is a group for parents of young children with T1. It will give you a chance to talk with parents in the same position as you. The other parents can give you strategies for dealing wit problems that come along.
My daughter was diagnosed T1 at 17 (nearly 2 years ago). She had a hard time coping with it initially but settled down quickly. Her diabetes was uncontrollable. She thought she wasn't controlling it. It wasn't until she had a car accident 3 months ago and went to hospital (and is still there) that they realised that it was practically impossible to control. Her blood sugars would go from 25 to 2 in the space of an hour and back up again. She is now purely on sub-cut Lantus once a day because she is PEG fed.
Good luck xxx
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?
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.
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
Gerrard-thankyou I had a look at the carb counting link I def think I will have a try at getting to grips with it.
I have found out so much more here on mN than from the hospital I am very surprised at the attitude of the hosp I can't believe we have not got much support from them
They're about the size of a pager and connect to patient via thin (very thin) tubing which attaches to a canula. You insert the cannula yourself! It's really easy, takes a little practice. Most come with an I section devise which means you just point and click and it's in! The pump then delivers basal (background) insulin 24/7 - imagine drip, drip, drip every few minutes! How much it delivers is determined by you/your DSN (increasingly you!) dependent on your DD's requirement. The rate is set in time blocks so you can have lots of different basal rates around the clock to suit DD's lifestyle. Time to eat? You carb count and 'Bolus'. This means you simply deliver a Bolus dose via the pump to cover meal, snack, icecream, crisps, whatever! Again, the pump will be programmed with, most likely, different insulin carb ratios for different meals.
Say your DD was out on her bike, really active ... you can set what is called a temporary basal to give less insulin so as to minimise a drop in levels. Say she's sick and running high ... sometimes you might need an increased temporary basal to keep numbers at an acceptable level. It offers you lots of flexibility and I'm probably blinding you with information which is too much, too soon!
There are three main pump companies in the UK - Medtronic, Animas and Roche. Have a look at their websites. They each have different advantages. Medtronic can be linked to a CGMS and if blood sugar goes below a certain level, then the pump will suspend insulin delivery for a couple of hours. It's called low suspend and those with sensors and a Medtronic love it. We have a Roche Accu-Chek Combo. It doesn't have the ability to connect to a CGMS but it does have a Bluetooth handset. This means that if DS is bolusing or putting a temp basal on, he does not have to take his pump out - the handset is a Godsend - you don't have to fumble under the bedclothes searching for a pump at night!
CGMS - brilliant and will give you peace of mind but they don't have 100% accuracy. They will give you lots of trend data and great trend information and will alert you to highs and lows which are on their way. Can be quite difficult to get funding for - we self-fund.
Hope the above is of some use - sorry it's an essay!!
Thankyou lauren-that was exactly what I needed to know, the basics explained perfectly Iam so grateful.
Pump sounds ideal. Dd is being good at the moment with jabs but only wants legs used-she doesn't complain if we do legs but if we do tummy/bottom she is starting to get upset.
Do hospitals usually fund just the pump part then and not the cgm? Is it expensive to self fund ?
We have a pump . It is great! There is a small cannula that goes in the skin , usually tummy or bottom, and we change it every 2-3 days. There is a little inserter that fires the cannula into the skin which is very easy to do. DS hated injections but loves having a pump instead.Think once it is in he doesn't feel it. Stays connected all the time apart from bath/shower or swimming when you just unclip the tubing from the cannula which stays in.
There are locks you can use on the menu to prevent buttons on the pump being pushed by inquisitive fingers.Definitely sound out your team about pumps. Am sure especially for toddlers they make life so much easier. DS would refuse second helpings or pudding because he knew it would mean another injection - now he eats what he wants & just boluses for it. Far less restrictive!
Take your time with carb counting & ask for help with it. The dietician should be helping you with it too but is fairly simple once you get used to it so you can teach yourself. Just need to either have digital scales & carbohydrate info or use carbs & cals book to estimate.
Your DSN should then help you work out what carb:insulin ratios to use - these may vary for different meals. For example often breakfast amount of insulin is relatively huge compared to other meals. The sooner you get on to carb counting food the better things will be & also you will feel more in control.
Hopefully speak to you soon on CWD. Have a go at posting to say hi you are a newbie & am sure you will get a warm welcome. Will be looking out for you!
There is usually somebody around whatever time you post and no question is too silly to ask - we have all been there!
Cross posted - perfect explanation from Lauren.
Very varying access to pumps depending on hospital attitude. Increasingly a lot of teams are starting all toddlers on pumps but not all so really good to suss out your hospital attitude now. Many parents move hospitals to get access to pumps - hence the many very positive mentions of UCLH.
Funding for CGM is even more patchy as no NICE guidelines yet for them. It is pretty expensive self funding CGM - rough ball park of around £900 for initial set up with transmitter & receiver & then sensors cost around £65 - we use Dexcom & they generally last 10-14 days.
Even with CGM you do still need to do lots of finger pricks as they aren't always accurate but as Lauren said they are good for watching trends & can be used to alert for impending highs or lows so action can be taken. You still need to do a fingerprick though to check before taking any action , eg treating a hypo.
I will ask the nurse tomorrow I think when she comes to visit.thankyou for so much info it is really helping me
My daughter has has a pump since just after her 1st birthday. We self-fund cgms using her DLA money and she has had the cgms since she was 2.5. Personally I'd focus on getting on with the diabetes learning curve and asking about pumps before thinking about cgms. There's (another!) big learning curve with cgms and it can be pretty confusing at first.
Don't worry about testing a lot, it's information that you need. We could easily test 15 times a day in the first couple of years. I think you're approach of listening to your dd and joining in with things like finger pricks will really help her. My dd is currently asleep cuddling her bear who is wearing a cannula and dd's spare pump! (She was getting fed up about being the only one who needed cannulas, so I let her put one on the bear!)
Pumps are great for toddlers. Like the poster above, we have the roche/accu-chek pump with the Bluetooth handset. It means dd can be undisturbed and we can bolus her as & when we need to without her even noticing. She sees her pump as part of her body now, I think. Even tried to get in the bath without taking it off yesterday! (Fortunately they're water-proof, but still ...)
Good luck with talking to your team. If they're not keen & you are get your GP to refer you to UCLH. They'll sort you out!
When my DS was diagnosed at 8 years old his fingers were very sore and cracking and would bleed due to excema. We got round the problem of testing his sugar levels by using his ear lobes, which have a good supply of blood and you don't use them for anything else unlike your fingers. He still uses his ears and he is 32 years old. I am trying to imagine a three years old tiny fingers, perhaps they are getting sore as you are testing so often. When I used to do the testing I often could use the same hole more than once, I admit some nurses would be surprised we used the ear lobes.
I've tried earlobes just once - and toes too - when DS was asleep. I think it's a great idea but I believe consistency is key and he uses his fingers during the day. Always thought it would give the fingers a good break at night.
Totally agree with Oxymoron about the order of things - CGMS a little while down the line but it's brilliant you gave looked into it and have an awareness of it.
We will be seeing the nurse today and I have lots of questions to ask her, I think I will feel much better when I've seen her. My books have arrived as well so when I get a minute I will start reading them.
Dd had a really bad night-she has a horrible cold and temp and had a hypo in the night and it was a horrendous struggle to get something sugary in her and I felt so terrified.
Does it ever get to the point where the fear goes and you feel able to go out, prepared with medicine etc in a bag ? At the moment iam too scared to be alone with dd I feel awful saying that as I love her so much but Iam scared.even if dh goes upstairs or to the kitchen I start to feel panicky will that feeling go ever?
(hugs). Yes, those feelings will settle down and diabetes will become part of life. My advice is to pack a hypo kit and go out - then you'll have done it for the first time. It will get easier - in a few weeks you'll be amazed at how much more confident you feel. You'll soon be able to feel happier about her being in a different part of the house or garden to you - promise! It's only 10 days since this elephant entered your house, that's no time. You're shocked and grieving and that's natural - and you're also learning a helluva lot in a short space of time.
Bummer during the night. It's likely your doses need tweaking and hopefully your DSN will do this today and get things levelled a bit. We always check during the night - when we go to bed and at least once thereafter depending on levels - we catch both highs and lows. It's worth checking but you get so tired!
I really hope it does get better I remember with dcs other problems (they have genetic condition and dislocate joints a lot and dd1 faints) I used to be nervous but had got to the point where we just always had a medicine bag with us and food for ds (he has anaphylactic reactions due to allergies) and we would go out and I was ok.
I feel so much worse about hypos though maybe it is just the final straw in terms of dcs being unwell.hopefully it'll just end up that we simply have a bigger medicine bag and I am not terrified of going out.
Had a bit of a breakdown this morning, dd had slept in late as her cold so bad and I just felt overwhelmed worrying she would miss breakfast got all worked up and cried and cried, then I started wondering why can't I just give her my pancreas then she would be cured and I would have it instead as I could deal with it and understand then she could be well again.
I feel like I'm going mad sometimes I hope this stage passes.dd being so good and I'm being so stupid she needs me to be strong not a emotional mess.
ariane, don't forget you are dealing with a lot right now in lots and lots o ways. I have seen your other threads and life is quite crap right now. Your anxieties may not all be about her health, underneath...but of course it is difficult.
It will get better. Diabetes is a manageable condition, it just takes training and practice. You are a great mum and you will get there.
Make sure you access all the support you can...your mum, cleaner, childcare, health professionals etc. If you need to, go to the doctor for your own sake as they will be able to help.
Please take care of yourself. Thinking of you.
You're not being stupid, it's just part of the process (including a grieving process) of adjusting to a major change. I spent 9 months seeing a parent-infant psychotherapist after dd's (very traumatic) diagnosis when she was a baby.
Yes, the fear will subside. I find the key to that is knowing what I'd do in any situation and making sure I have the kit to do it.
I keep an 'out & about' kit stocked up and never go out without meters, including spare bG meter and a ketone meter, insulin pens (in case of pump/cannula failure), dextrose tabs, glucogel and a glucagon kit as a bare minimum.
Thankyou I'm sorry I moan a lot! Things have just got gradually worse the past few months and this all just feels like too much.
I'm trying so hard to get my head round it all I just want things to all be better.
I think it IS all too much. You are dealing with waaaay way more than most people. Which is why you need to ensure you are supported. Please ask for help whenever possible. Big hugs.
Saw the nurse she was really nice and v helpful.slightly changed dd doses again to avoid night time hypos.
We do need to do a food diary as well for few days before our appt.
Good, glad appt went well.
Glad to hear that things are a little better and you are getting some support.
I am even more glad you have signed up to CWD- have a look at the FFL conferences on there. I have met some of the most amazing people- children, parents( some of whom have posted below) other type 1s, educators, therapists, through CWD and it is the most amazing silver lining on an otherwise awful cloud!
Send the CWD list a hello email when you feel able.
If Harrow aren't interested in giving you a pump soon look at moving to UCLH. I'm a doctor myself and we moved from Watford to UCLH to get better care.
Please let yourself cry and grief as you begin to adjust to diabetes in your life. You don't need to be strong all the time.
From tomorrow they are. Going to change her fom 1 unit of lantus at bedtime to half a unit of something else (levomir I think she said??)As dd is getting hypos all through the night and we struggle to get her to have anything at all and its frightening.
I am still finding doing the injections very difficult. I have to force myself to do it, I know dh would do them all but I don't want to just give up I know if I go a day without doing them then I will just give up and it'll end up dh doing them all. I'm hoping it'll just become easier the more I do. I've always hated needles dd is so so brave I am so proud of her.
Hi Ariane - sounds good! Lantus and Levemir are both basal or background insulins which act over a 24 hr period - their profiles differ slightly so hopefully Levemir will be better for your DD.
Yes to keeping doing the injections - its really hard but you really ought to make sure both of you can do everything, that way if someone is sick or away you won't be stuck.
Can I suggest that you keep a food diary as an ongoing exercise rather than just for a few days befor your appointment. As you get to grips with Diabetes you will find it necessary and really helpful.
Did you mention pumps to the nurse? I wonder what sort of response you got?
You're doing really well, you know. Have confidence in yourself and as JMF said, come and say hello on CWD when you feel up to it.
I don't hate needles but because my son was 8 he did his own injections from the beginning, I have done very few but I can still remember the first time, I was shaking afterwards and once the DCs had gone to school I sat down and cried, I can't imagine doing an injection into a 3 year old so you are doing really well. My DH has got a real fear of needles, he can't even watch someone having one on the TV. He has never done an injection or sugar level testing in 24 years or even watched my son do his.
The nurse said dd hypos at night mean they want to change her to the other basal inj and it comes in a 0.5 dose whereas lantus doesn't.
Mentioned pumps but she said for now to just carry on as we are and see the consultant in clinic in a week or two.I think I will just do a food diary anyway I would certainly feel better writing it all down and taking it to apptsn for all I know I could be giving her something wrong to eat-i assume she has a healthy diet but I could be wrong! For example tonight she was 9.2 before dinner-she had a jacket potato (small) 3 tbsp baked beans, 3 slices cucumber, 4 slices of pepper 2 strawberries, water and 50.l soya milk and 2 hours later bg was 16.9 I really feel that hosp need to see what she eats and how bg goes up/down as I havnt got a clue what I'm doing.
50 ml not l! Thatd explain a rise if it was litres!!
The more info you have about her bG levels and what she eats, the easier it will be to figure out what her insulin to carb ratio should be at meal times (ie. How many carbs she can eat per unit of insulin given). It took us a few weeks to (a) get the basal as good as we could (wasn't that good as we were also on lantus and had the problem of no half units) and (b) get a reasonable estimate of her insulin to carb ratio. She was all over the place in those weeks (often near 30 after a meal, plus hypos daily) and I think that's common. It just takes a while to get the doses anywhere near right, and after that it's finer-tuning and adjusting as they grow.
Really bad night again last night dd had 2 hypos, the consultant has said no basal inj at all untill tues when they see her at hospital.
Dh has just left me for half an hour on my own with her and ds2 so iam sitting here holding ds and watching dd (she's asleep) while he takes our older 2 to go to get something for dinner, I'm terrified but dh really wants to go back to work and wants me to try and cope alone (I want him to give up as other dcs have health issues and I'm not sure I can cope on my own). I am trying but its hard.
Really hope tonight is better I find hypos so frightening
I think Iam doing something wrong on CWD login I put in my email and password but I can't seem to get onto it or post anything am I doing it wrong or missing something really obvious?
No basal insulin at all until Tuesday? Gosh, I've never heard of that before. If she starts to run very high, please do contact them over the weekend. Do you have contact details for the DSN or is it the children's ward you ring? Maybe it will help. She is probably honeymooning at the moment which means her own pancreas is still producing some insulin - that could be what's sending her low overnight. But you never got a chance to try the Levemir, did you? Weren't you to start that today? Were you giving the Lantus at night or in the morning?
I don't know your other circumstances but you will be nervous the first few days you spend alone when your DH goes back to work. This is still so new and raw and probably not the best time to be making monumental decisions like that. Your DD is safe with you, her Mum, I promise!
Please come and introduce yourself on CWD. It's a closed list and there will be many less people reading there than here! It's not scary but it is a place where you will get good support to help you deal with these feelings and fears. We've all been there and the CWD ladies will help allay your fears. And I bet they'll have some worthwhile suggestions about the overnight hypos because they've been there too.
Oh cross post? Gosh, I don't know. I have the emails through my hotmail account and read it from there. Where are you trying to log into? Hopefully they email list - there's a discussion board too I think but heaps less traffic. Lt me know and I'll try to help.
ariane, pm me the email address you want to use for cwd (might be best to open a new account just for cwd, there is a lot of traffic), I can ask one of the admins to manually add you.
Are you using the email address on this link?
I think I know what I've been doing wrong ! On phone at moment but when I can get on computer I will have a try to post on cwd.
We were meant to collect the levemir today but nurse phoned and said nothing till tues and they will see dd then, I was worried she would start getting v high but hopefully she won't she has been really really low from about 3am every morning.
The nurse also changed dd to a glucomen monitor that does ketones as well.
Lantus was being given at night around 10pm I forgot to add
Jmf294-I cannot seem to pm whilst on my phone but once I have a pm I can reply, would really like to meet up if possible at some point if you still don't mind just pm and I can reply to you.
Sounds odd not having any basal. Make sure you check for ketones if glucose levels start to rise over weekend. Thought you would still need some basal!
If it is impossible to get low enough dose of lantus/levemir without causing hypos then this is where a pump would be much better as can give smaller doses & have different basal levels at different times of day.
I've always been told NEVER to stop my Lantus (basal) even if i'm ill and not eating
Ok, Iam worried now WHY would they stop dd basal injection ? Should I just start it again? They said to not do it until they see her on tues in clinic?
I joined cwd but can't get on computer only on my phone so can't put anything on there and ds2 still up so I'm so busy.
I'm so worried dd had a hypo last night again I don't understand I thought without the basal she would be higher today but actually she has had lower bg.the nurse kept mentioning honeymooning is this something to do with that?
What do I do re basal inj ? I am scared something will be wrong now I don't understand what on earth the hospital are doing. Dh spoke to them on phone not me maybe I should try to phone the ward?
No offence OP but your DD's medical team don't seem to know whether they're coming or going!!! I can't believe how little you seem to be receiving in the way of information and support...when i was diagnosed i was in hosp for 2 weeks!! i know that's no longer the case but it gives you an idea of the scale of information we had to get used to!
The hypos will almost certainly be due to the honeymoon period where her pancreas starts producing some of its own insulin before it finally gives up the ghost - this can last for about 6 months
How much basal insulin was she put on before they asked you to stop it?
Initially in hosp 3 units at night they reduced it to 2 after couple of days and then down to 1 unit as she was still having a lot of hypos.last night was 14t night with no basal and she still had hypo during night and bg was quite low today.
Iam frustrated at the lack of info and support from hosp DSN was nice and helpful when we met her but the whole period over xmas and new year and the week in hosp nobody told us much and we got a lot of conflicting advice.
Is she then having novorapid with meals? Have they gone through carb counting?
Honestly this is insane!! .... I know how little friends and colleagues know about type 1 and how i have to explain it to them, so how the heck they expect a parent to look after their child with so little information i'll never know!!!! .... How low has she been? I think i would turn up at the hosp and demand some answers!
Yes novorapid 1 unit at mealtimes.last night hypo she was 3.8 previous night 2.7 and 2.8 night before that. They had told us to stop 3am check but I couldn't just in case iam glad I ignored them.
I feel exhausted by all this its ridiculous I have ordered books to read but I am not a doctor a lot of it is confusing.
No mention of carb counting yet we are just giving her her 'normal' meals trying (and hoping) that we are givinng her the right things.
Honeymooning is the only reason I can think of for stopping basal insulin. The honeymoon is the period after diagnosis, once insulin has been started , where the pancreas reactivates a bit and uses its remaining beta cells. It means the child needs much less insulin than they do later one when more beta cells have died off. I have never dealt with it as my dd had no honeymoon period.
I would keep a close eye on her bG and ketone levels, and don't stop the night checks if she's hypoing at night.
Do you have out of hours numbers to contact your team when you need to ask questions?
We have a number for the childrens ward if we need to speak to a doctor.
I have been surprised how dd bg has been quite low today I assumed with no basal inj it would creep up but it has been low (well low for dd around 8-12 most of day with a couple of drops to 4 or5). Usually we have highs in the afternoon of anything up to 18 (which makes her suddenly fall asleep).
I am finding it all confusing but everytime I get a spare min (not often!) I've tried to read some bits from the books I've got (that were recommended on here).
Def don't stop the night checks...i test my blood about 10 times a day so you can never do too much testing! What the heck are they doing telling a newly diagnosed parent to test less?!?
I know it's different for me because i'm an adult but your DD seems to be on very little insulin so she must be in a honeymoon, or maybe it's more complicated because of the other medical problems she has? ..... I take 14 units of basal, and 1 unit of novorapid for 10g of carbohydrate, so eg at breakfast i have 7 units.
Things is, all the books and information from us guys isn't the same as proper medical advice for someone who knows your DD...you are being treated appallingly IMO...get on the blower in the morning and demand a review...don't worry too much tonight as nothing drastic will happen now that she's had some insulin but you shouldn't be going through this alone!!
From what I know dds other medical problem (ehlers danlos syndrome) shouldn't affect blood sugar/diabetes in any way at all.It is a disorder of the connective tissue so she has problems like pain, fatigue, dislocations, constipation and a hernia. It has never had an effect on any medication before and I made sure all tje doctors we saw in hosp knew she had eds and they didn't mention a link.
She is 3 and weighs 13.6kg so not sure if weight/age affects insulin dose?
Iam just confused and worried and not having had proper advice has made me more anxious-I knew that day in hosp when dd had a hypo and the nurse wanted to give dd insulin then lunch that things would be difficult.
Yes, weight affects insulin dose. The smaller you are the less you need in general, but lots of other factors affect it too (e.g. growth hormone activity means you need more insulin).
I would seriously consider asking to be transferred to a better team. There have been recommendations on this thread. Even though we parted from our original team, they were good at the beginning. We had a 10 day stay in hospital (not usual, but my dd was extremely sick at diagnosis), a structured education process, frequent home visits initially, and a full list of contact numbers including out of hours care. You could ring the main switchboard at your hospital and ask for the on-call paediatric endocrinology registrar, or the on-call paediatric registrar. I'd also consider talking to PALS about the lack of support.
Hope you have a reasonable night.
Ariane, I second what Paddy said - don't stop the night checks. Always do them, even when DD is stable - you will catch highs and lows. Many of us consider it dangerous not to test at night.
Do you give a flat 1u of Novorapid with each meal? Have they taught you anything about carb counting? Even when DS was first diagnosed we did rough carb counting - he was also 3 and on a different regime but we had to match carbs to insulin which was awful. Have you done any BGs two hours after a meal? The number then would give you an indication as to whether or not the 1u is working but truly you'll never know unless you carb count.
The more I read the more I thnk referral to another hospital - immediately!!
Hope today was better.
Yes 1 unit with each meal regardless of what she is having in fact we have had no real advice about food except one leaflet from hosp about snacks.
I got the carbs+cals book and from what I can see dd is not having enough insulin for the amount she eats (I may be wrong) she has had a lot of hypos 2 in the night and 2 this afternoon she gets quite low v quickly we have to give her juice then she's really high again(16).
We have done a food diary and a BG diary since being in hosp-bg on waking before meals and 2 hrs after before bed and we check at 12 and 3am, at 12 bg usually quite high but it starts to plummet around 3am and sometime after that dd has hypos around 2.5 so after 3am we know we have to keep checking her.we tried waking her when it got to 5.0 to give her a snack but she still had a hypo an hour or so later.
I don't want to adjust her insulin myself based on what she eats as I would worry about overdosing her.I am really confused though as things like 1 potato waffle in the book was 12g carbs and it said 1u per 10g carbs so if dd has a dinner of 1 potato waffle, vegetables and 2 fish fingers plus a bowl of plain soya yog and strawberries (that's the sort of quantity she has) then surely her 1u will not be nearly enough to deal with the meal she's just eaten??? Or am I getting it wrong (Iam v bad at maths and similar things).
SO confused by it all
This is where your medical team should be helping you get out....i've always had a ratio which has varied depending on a number of factors but when i was younger it was 1 unit of novorapid per 15g of carbs
I don't weigh food out now cos i've just got that used to it that i'm pretty good at estimating ..... but NO WAY should you have been left to do it all by guess work!
I am really hoping that on tuesday things get sorted out I am going there with the food diary BG diary and a huge list of questions as I can't carry on like this for much longer.
Dh was saying earlier how on paper dd diet looks quite healthy but really we have no idea if anything we are giving her is wrong. We don't have a clue.
Gosh, you've really been sent out with no information. No, don't change anything without advice. Like Paddy, when DS was younger he had much less insulin - on MDI some meals were 1 unit to 15g carbs but others were 1 unit to 20g carbs. you couldn't possibly figure it out without proper medical advice.
Good luck tomorrow.
Saw DSN and dietician today.Looks like we have been doing quite a bit wrong
Firstly when dd was in hosp we were told to treat a hypo with quick acting sugar eg juice or dextrose tablets/jelly babies then once it was up to give a snack like toast to keep it up so it didn't crash back down again. We have done this even at 3 am when dd down to 2 and really not with it at all we have given juice then woken her so she can hav carb snack to keep levels up till morning. Apparently that's wrong and was misinformation from ward staff we are only meant to give sugar if hypo no carb after. I feel so stupid.
Also told to stop night checks.I can't do it I'm too scared I will have to still do bg during night just in case.
Asked about carb counting as I had got the carbs+cals book and was reading on websites abt it apparently no we can't do it for dd it doesn't work in children her age and the advice in book that its 1 u of insulin per 10g carbs is not right sometimes its 1 u for 10/15/20g carbs but its not suitable for children.
They are still keeping her off the basal injection at night so she is only on novorapid at mealtimes.
I'm even more confused than ever.Maybe I'm just thick but my head is in a muddle
Hi Ariane, I've read this thread and am quite appalled at the amount of contradictory information and lack of support you have had. I am also a newcomer to diabetes, ds was diagnosed in July aged 12, so am not an expert, but had to come on and say you are not being stupid! Or if you are then so are we because the advice we were given and follow is to treat a hypo with dextrose/glucogel/ribena and follow up with biscuits 15 mins later, even at night. We carb count like mad. However having a teenager may be a different situation with carb counting.
I don't know how easy it is for you to get different care but our experience at Kingston (not that far from you I think) has been very different!
Thankyou, I am just so frustrated and dreading next hypo as which way do I deal with it? We were giving the sugar then after it was up again 10-15 min later a mini wholemeal pitta. So so confused. I just feel so frustrated we have been told a million different things and this sudden no basal inj thing will dd have to restart it at some point the hosp are very vague .
Awful,awful! Seriously I would run as fast as you can to another hospital with an up to date team who will also not make you feel stupid! I am horrified!
When we were on MDI we used to treat hypos with 10-15 g of dextrose & then give a digestive biscuit afterwards. Since being on the pump we were told to stop the biscuit & I think the advice was maybe also starting to change as well when on MDI.
But that is so bad you have been made to feel stupid. The main thing I guess is to work out what happens after a hypo & if just the fast acting sugar is enough to keep her up.
Your DD has been having hypos at night - it is common sense to keep checking at night!
As for carb counting not being suitable for children that is just wrong! Yes the carb ratio will vary for different children but thats what they are there to help you work out.
No idea what is going on with the basal but have a feeling a pump will be the way forward with that.
Get back onto CWD & ask about the best & quickest way to change hospital! You shouldnt be made to feel this way.
Arian i am absolutely DISGUSTED be the lack of support you are getting. You are not stupid, the people who are stupid are the idiots at your hospital who are giving you bad advice!
I've had type 1 for nearly 30 years...when i have a hypo i have lucozade (find it difficult to chew as it makes my mouth go numb) and then i follow it up with a piece of toast or some other startchy carb or otherwise there's a very real chance i will come crashing down again!
I'm also mega suprized at them stopping the basal insulin. Have you got a designated diabetes nurse? Sorry if you've already said this, i'm just so shocked that they're putting you through this.
As i say i'm nearly 30 years into this and i was say that even i get more support with my condition that you are getting and you're barely 5 minutes into it.
Phone the hospital in the morning and demand some answers...or failing that phone your GP and ask for a different hospital!
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