Mum of newly diagnosed type 1 (after very severe DKA)

[carb-counting-mum]

Hi,

Our little girl was rushed to hospital with very severe DKA. Came as a complete shock to us. She'd been off school for a few days because of a bit of a sore throat and being tired. Thought she was just a bit run down with a bug. Gave her plenty of fluids, rest, bit of pampering - the usual thing. There was no tummy ache, no vomiting, no thirst - none of the usual warning signs. The day before I spotted how much weight she had lost which freaked me out. I was about to take her to the doctor because of the weight loss when she started to suddenly get extremely unwell (hyperventilating, unable to sit up). Ambulance took her to A&E where doctors worked really long and hard to stabilise her, but they warned me she was extremely poorly and that she was in a very critical condition. She had a bit of brain swelling which fortunately the docs managed to stop in time. She was discharged 6 days later and she is much better now. She is suffering from bad headaches though, which I fear may be due to the brain swelling. Struggling to come to terms with it all. Feel so guilty I didn't realise she was so very poorly. Docs and nurses say that she had a very unusual and sudden presentation and that I couldn't have known etc. but I still feel really bad. Trying to come to terms with the type 1 diagnosis and what it will mean for our family. At the moment all we are doing is counting carbs, planning meals, insulin and blood tests etc. I'm sure as time goes by it will become second nature. My little girl is an absolute star and hasn't complained about the injections once. She is so brave and accepting of it, she's doing better than I am!
Just wondering if there are parents out there who have experienced the same. And will I EVER be able to sleep at night (have had some mild night-time hypos already).

 

[tazzle]

oh what a shock for you mum ...... :shock: ..... you definately were dropped init. I am sooooo glad your little un is now recovered and home :clap:

Sorry I cant help much re the practical stuff but just wanted to *hold hands as it were as a fellow mum. My daughter was much older than yours when she got gestational diabetes needing insulin 4 times a day and I was a liitle removed in practical terms from my cousin who also had type 1. I can however empathise with the worry bit as none of us likes to see our children experiencing this condition. ( my brother t2 and I almost !)


There are other mums and young people around and I am sure someone will be along before long with more experience and can tell you realistically what things are like.

 

[carb-counting-mum]

Thanks very much Tazzle, it's great to know there is support here on the forum. I'm reading through lots of posts and it's really helped me already.

 

[tazzle]

its just great to know you are not alone even when it feels like cos you dont personally know anyone in the same sort of situation :wink:

Bless the little ones, they just accept things far easier than us adults !!!

 

[cupcakes_1]

Actually my diagnose was a bit like that, but without the brain swelling. My mom took me to doctor when I started throwing up after weeks of tirdness. I havent been diagnosed for long but it feels like I had it forever. I got the hang of it right now
but injecting myseld at school is a bit uncomfatable. Sometimes I see my mom checking up on me when I'm asleep but till now I never got any hypos. It must be hard whay your going through right now, but its managable. I doubt the worrying will ever stop, but i'm sure your daughter will be able to handle it. To tell you the truth the testing and injections dont even bother me. Thy only annoying thing that sets me apart from others is the carb counting. And for the midnight hypos try giving your daughter a candy bar before bedtime with the slow acting insulin. Having a high (7-12) at night doesnt do much, and its better than hypo.

 

[carb-counting-mum]

Thanks for your supportive messages, it really helps. Cupcakes, her sugars are a bit all over the place at the moment. We give her a slow acting carb snack just before bedtime (piece of toast) but she can still go low during the night, even with high levels at bedtime. Like last night, she went to bed quite high 12 mmol/L, this had barely dropped at 3am (11.5 I think), but she woke up on 4.0.
We had to deal with a very bad hypo earlier tonight. She said she felt a bit shaky. I tested her and it was 1.9! Got her to eat 4 dextrose tabs. It rose to 3.5 after 5 minutes, then to 5 at 15. Followed up by a piece of toast and jam. It scares me that she didn't feel it earlier. She seemed fine, didn't look tired or clammy, she was just watching telly. The first 2 very mild hypos she had she could tell us about really early on, but no early warnings since I hope this doesn't mean she is developing hypo unawareness. Reading online, it seems this usually only develops over a long period of time, when you've had repeated hypos? I will ask the nurse in the morning.
Will try and get some sleep. Hubby's turn I think to do the checking (but can I trust him to do it? ). Thanks again, it really helps to know that we will manage eventually, just like you all have done.
x

 

[tazzle]

such a difficult time.... her getting to be aware even when she is doing something "interesting" and is distracted and you ( and dh) being aware without being too "hovering" :wink:

Nearest I have experienced to this is having my friends little girl stay with us and she has a tracheotomy.... needed to listen out in case she needed suction - which happened every few hours. Thats just a tiny, tiny window into what it might be like for you atm !

It will be a steep learning curve but you will learn :wink: ...... although the one thing I do know is that the body is not always reliable in doing what it "should " :roll:

I hope you sleep well :thumbup:

 

[sparkster]

hi, i'm a type 1 myself, have been for 4 yrs, my little niece was diagnosed 3 wks ago, only 4 and a half. She drops quite a bit through the night aswell which concerns me more so than her nurse at the moment. For me i was always told that if my longacting insulin is right then if i go to bed at 5mmol then i'll wake up at 5mmol which works for me and means that for a third of your time your at good level. I can only assume it's alot different with children, i thought maybe her long acting was wrong or the fact she goes to bed while her teatime fast acting insulin is still working might be the reason! When i was first diagnosed i went low during the night and so always had to have supper until my consultant(also a type 1) told me this was wrong and changed my longacting. hopefully it get's easier!

 

[Fallenstar]

Hi CCM

A very difficult time for you and your lovely daughter, I have been Type 1 for 20 + years and as a Mum still thank goodness that neither my kids have it thus far , because I know how hard it must be for Mums and Dads like you, to try and have to second guess where your Daughter's blood sugars are at any given time, so difficult, when they are close to you and within you care must be a job in itself, let alone when they are out and about being active at school ,play groups ect, it must be so hard, my heart goes out to you

.I can tell you though it will get easier for all of you ,as she gets older and understands things better herself and she can take charge more herself. So hang on in there, it sounds like you are doing a sterling job, she is lucky to have you and her Dad in her corner.

I used to have very bad lows over night when I was on Lantus, I produce none of my own insulin and I am very insulin sensitive, which I know the young children usually are also. If she is dropping low REALLY fast then the Hypo awareness is not there as much, or the fight or flight hormonal response does not have long to " catch up" ,so there are kind of "delayed" Hypo warning symptoms sometimes if you go very low, very fast.
It is not Hypo unawareness, it is more like Hypo symptoms needing to catch up with the sudden drops I found, but they will come and usually in an even bigger rush but you can be very low at this point, like you said a 1.3 ect. But they will kick in and all heck will break lose then!
Hypo unawareness, as you said, usually develops over a much longer period of time, years even,so please try not to worry about it being that.

I think you may need to drop her Basal back , or if it is the once a day one, then take it in a morning to avoid the night time lows. Levemir can be split which is more controllable in my opinion for the insulin sensitive. If she is not on Basal/Bolus then ignore what I have just said, and cut back on her tea- time does of what ever she is on by a unit or two and see how you go. I would presume she will still be in the Honeymoon period which will confuse matters further for a while but as I said hopefully things will get easier.

 

[daisy1]

Hi carb-counting-mum and welcome to you and your little girl.

I see you are really starting to get the hang of things now and have had lots of good advice from other mums who also have children with similar problems. I hope your little girl is now feeling better and that you are learning all the time how to do everything you can for her. Here is the information that we give to new members and I hope you will find it helpful. You will obviously have loads of questions so just ask as much as you need to and someone will always help you.


BASIC INFORMATION FOR NEWLY DIAGNOSED DIABETICS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you’ll find well over 30,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.
There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

Another option is to replace ‘white carbohydrates’ (such as white bread, white rice, white flour etc) with whole grain varieties. The idea behind having whole grain varieties is that the carbohydrates get broken down slower than the white varieties –and these are said to have a lower glycaemic index.
http://www.diabetes.co.uk/food/diabetes ... rains.html

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips
The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic

Note: This post has been edited from Sue/Ken's post to include up to date information.

 

[carb-counting-mum]

Thanks again for your lovely, supportive posts. I feel a bit better already, knowing I can ask the experts!
Fallingstar, I think you're right on the money when it comes to her reason for her noticing her hypos at a late stage. I think it is because of her levels dropping really fast. For example, she was 9mmol/L before her tea, less than 2 hours later down to 1.9.. I'm glad it is very unlikely to be hypo unawareness, I'm sure it has more to do with her levels dropping quite fast.
I have spoken to the nurses who lowered her last Novorapid (teatime) dose, as she seemed to get low 2 hours after her tea. I think it was possibly dropped too much in hindsight as she was 20.0 at 11pm, still 14 at 3pm. She woke up with 9.4. So might need a bit of tweaking. Her Lantus dose has been lowered several times since she left hospital, now down to 4.
I think the honeymoon period doesn't make things any easier, with her own insulin being released too. I hope it will all settle down soon. I keep testing her a bit more than I would like to now, for example before snacks as I don't want to give her carbs if she is really high, or might want to give her a bit more if she is a bit on the low side.
Thanks again all, I think you're all wonderful. I am learning new things every day and I'm sure we will manage to get on top of this.

 

[Fallenstar]

Hi CCM

I think you are doing a great job there, and it sounds like you are getting some good help and support from your DSN which is great.

I think the only thing you can do is what you are doing ,as much as I bet it pains you more than your daughter with all the finger pricks ,testing at regular intervals especially before snacks to make sure you are not carb loading and raising levels you may need to over correct later is the ONLY way.
I'm sure you will get to recognise a pattern soon. If you can give your daughter the same meals on a day to day basis ( again not easy with fussy little ones) for a while, and test how she reacts ie an hour after eating, then at the two hours mark and so on, just to see how she reacts to these foods. You need to see where the trends of when her peaks are, and when she starts to go back down again then this may help you.
It really is about seeing when you are going up and when you are coming back down...not just random tests or even at the before meal or even two hour mark which is advised, as you may be going higher with certain meals/ foods at the 3 or 4 hour mark...or low, as the case may be......so yes, test, keep records and try and stick to same meals at very regular times to start with.

you will be able to step back from this after some time and test less, but to really see the trends of BG when you have swings ,you need to test a lot more I have found . Again, only ideas, but this did work well for me, but I understand all the testing with a child is a whole different story, I hope some other Mums with young children will come along to help too.

I know Basal Bolus is supposed to offer more flexibility with eating and on DAFNE we are taught Dose Adjustment For Normal Eating, which is what it stands for...but keeping things "samey" meal in meal out for some time and testing may help you and your daughter and give you more control at the moment. At the end of the day though ,it's testing often at first, tweaking doses , getting a basic knowledge of which foods do what to her BS and hopefully if she is still Honeymoon, which she may not be, then riding it out.

You are doing a fab job it cannot be easy, any help or support,just holler!

 

[Fallenstar]

forgot, another thing which may help, may be worth mentioning to your DSN or researching , is a continuous glucose monitor. I was attached to one given to me by my Diabetic team for a month, it was very enlightening and helpful. This would give you a good overview and negate the sore fingers.

 

[Laubie]

It really sounds like you are doing a fab job at this difficult time! I was 9 when I was diagnosed. My parents recorded various interviews about their feelings as a family and as parents towards diabetes and their little girl being diagnosed for one of my DSNs. She was doing a pHd in diabetes care.
My parents told of how shocked they were, how it was a massive adjustment, even how sad they were about their daughter having a lifelong medical condition after being a healthy, active child for 9 years. But most of all they spoke of the guilt they felt. Absolutely ridiculous in my eyes, but it was how they felt at the time! Guilty for not recognising the symptoms sooner, guilty for every carbohydrate they allowed me to have in the weeks leading up to my diagnosis (as they were pushing my BS up and making me even more unwell), and guilty because they were told at some point that there are genetic factors involved, which my mum took to mean that it was directly the fault of her and her genes that I had diabetes!
But this condition has become a part of who I am. Of course I would love a cure and be able to eat all the chocolate I want, but being a diabetic is a part of my identity. It does get better, the control becomes greater and eventually you come to terms with it. My parents don't feel guilty any more - it wasn't anyone's fault that I got diabetes. It was just something life threw at us.
Over the years I have had various other difficulties arise because of diabetes. When I was a teen I rebelled and ignored my condition. I resisted being on a pump for many many years. Eventually, I went on an insulin pump in May (this year). It has changed my life.
Would definitely recommend a pump. Not sure if it would be practical for your daughter's lifestyle, but it has actually allowed me to do MORE 'normal' things than I could do before, not fewer!

The hypo situation you described deffinitely sounds like her BS plummeted quickly, which is why she didn't have symptoms until below 2. It has happened to me quite a few times, but as long as the symptoms are recognised and she is conscious and responsive and you are able to treat her (or herself at some point!) then you shouldn't worry too much by how low the reading is. Especially at the moment, when everything is all over the place and you are all still learning.
The honeymoon period will definitely be messing everything around too - which may explain her low morning readings. Persevere, as when she comes out the other side things will all have to change again!

I know I rambled a bit - but just thought I would share my experience with you. All the best to you and your family and I hope you have a lovely Christmas and New Year.

 

[jodysd6]

I was 16 when diagnosed so not much help though a friend from a non diabetes group has a 6 year old girl with type 1 and I only realised when I mentioned a new pump that her daughter was diabetic and that she was using the same pump, so I do think pumps can be great for children, she said it made a big difference for them. My only other thought is that when someone earlier said it must be like a full time caring job now you are looking after her diabetes and I wanted to say in case you didn't know that it is classed as caring and there is an allowance you should be entitled to now to help, and it may be worth looking into that.

 

[carb-counting-mum]

Thanks all! Husband and I are now both a little more relaxed about things, including night-time checks. I am not freaking out about hypos, I think we (usually!) know what to do and this helps us to feel more capable. No longer on the phone to the diabetes nurse every day.
Great forum, I'm learning a lot reading about all your experiences. Thanks again.

 

[jayne15]

Hi we are 12 weeks into diagnoses of 7 year old little girl, luckily for us she had quite significant symptoms and we managed to get her sorted before severe DKA set in, Saying that in hind sight I should have took her sooner to the doctor but you put it down to being a typical kid- you know always starving and drinking more and even when she wet the bed a couple of times I even made excuses for that too much to drink before bed/late night and tired.
believe me it will get easier, the hypos and hypers will still happen but you and your child's coping mechanisms will get better. the hardest thing for us was trusting what she ate would get her through the night but now as I have gained more confidence I am not as worried as I was. The first time I left my little girl for 1 hour she had a 1.9 I diddnt believe it and she diddnt have any symptoms but was busy playing. Now 12 weeks in she is very good at recognizing hypo and we have had them everywhere in the baths on the train in the park-we just get on with it now which I never thought I would get to this point 12 weeks ago. You are doing a fab job, do not be to hard on yourself (easier said than done I know) take one day at a time in the early weeks, make sure you take care of yourself and accept any help that is on offer, my mum does injections too which has been really helpful when I need a night off or at work- My partner and I cried for a month but its just like second nature now just a bit of a pain and inconvenience. we inject and test in restaurants and have booked a holiday and do most things we did previously it just takes a bit more planning.

take care and best wishes x

 

[carb-counting-mum]

Thanks very much for your lovely supportive message Jayne. You sound really confident already in dealing with your little girl's diabetes, even though diagnosis was only 12 weeks ago. Gives me hope that we might get there too! We're finding it easier already, compared to the first week or so. My little girl is amazing, never complaining and actually really eager to learn about carbs, which snacks to have etc. She is also getting better at feeling her hypos. We're still having quite a few of those but luckily not really bad ones.
Thanks again. Hope your little girl is coping well with the blood tests/injections.
x