# My 4 year old girl has "type 1"



## Fortune (Nov 28, 2011)

Hi, I am new to here as my little girl was diagnosed about 5 weeks ago now.  I can't believe it all lead to this as we thought she had a water infection.  She seems to be doing remarkabley well has been so good about the whole process while I on the otherhand am worrying all the time.  She on 5 injections and were not carb counthing yet which is really annoying.  And we can never get hold of the diabetes lady to answer our questions.  I am still abit unsure about testing in the night.
I did her bloods at 10.30pm last night and they were 4.5 so I woke her up and gave her juice and biscuit - was this correct or should've i waited for her to go lower.  Then because she went a toilet at 12.30pm we re-tested her and she was 9.0 so we left her until morning and it was 7.9.  So what I want to know is what im doing is that right ?  Or should we retested her later.  Also people keep telling me that diabetics have to be careful if they knock there feet - she always knocking her feet she's only 4 - should I be worried.


----------



## Steff (Nov 28, 2011)

Hi Fortune and a warm welcome to the forum, sorry to hear about your little girls diagnosis and you have to be here,we have a wonderful group of parents on this forum who im sure will be along soon and there far more eduacated in this and will be able to answer your queries, just be safe in the knowledge if you have any worries,fears or just need some general advice you are in the right place x.

This place here is also a great for parents http://www.childrenwithdiabetesuk.org/


----------



## Copepod (Nov 28, 2011)

Welcome Fortune

A bit of reassurance about feet. The problem can arise if diabetes leads to diabetic neuropathy, which means unusual sensations in nerves - sometimes pins and needles, sometime loss of sensation, so the person doesn't notice when they injure their foo, so an injury goes untreated and can lead to infection, ulcer etc. However, not everyone with diabetes gets neuropathy. 

So, while it's sensible to be careful with your little girl's feet, as you say, she's 4 years old, so of course she bashes her feet sometimes. As long as she goes "ouch" or cries, that's a good sign, as she is obviously feeling the knocks.


----------



## Northerner (Nov 28, 2011)

Hi Fortune, welcome to the forum  Very sorry to hear about your daughter's diagnosis, and the problems you are having getting hold of your healthcare team. We can't offer medical advice, but we can share our own experiences with you, so whatever happens you can be sure that someone here has experienced it as well and will be able to offer you some support.

You were absolutely right to give her something when she tested at 4.5 as there is always the possibility she would have dropped further - I would do the same as you if I woke to that level 

I would strongly recommend having a look in the Useful links thread - lots of links to helpful sites and reading material. I would particularly recommend getting hold of a copy of  Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas which will cover everything about Type 1 in a very accessible form - it might answer questions that you want to ask your DSN, or give you ideas of things you want to know more about.

As for knocking her feet, this is less of a problem in one so young. The main thing to watch out for is if she gets a cut or an infection that does not appear to be healing. Check her feet over each day and if there is anything that worries you then seek help. The problem is that if blood sugar levels run high for a while then infections can be more difficult to clear, but as I say the main dangers in this area are for people who have had diabetes a long time and may have lost feeling due to many years of high BG levels and therefore don't notice when they have a wound or infection.

You may also be interested in joining Children with Diabetes, which has hundreds of parents of Type 1 children and will offer you wonderful support as you learn.  

Please feel free to ask anything you want and we will try our best to help out - nothing is considered 'silly'!


----------



## Hanmillmum (Nov 28, 2011)

Hi fortune, sorry to hear about your daughter but welcome to the forum 


You did exactly what I would have done with that 4.5 reading, I usually check Millie before I go to bed and have a good idea of the range she needs to be in at that time to see her to the morning, we do however have her backgroung insulin fine tuned at the moment. If I'm ever not sure, or she is poorly or had an unusual day with food or activity, I would do some night checks too.

It is very worrying with the little ones as they struggle to articulate if feeling hypo or levels too high and sometimes for us there have been no signs. We do a fair amount of testing, but that is partly due to being on a pump.

Hope you manage to pin down the diabetes nurse!

Tc


----------



## Robster65 (Nov 28, 2011)

Hi Fortune. Welcome 

You seem to be doing really well, considering how little support you're getting.

As for feeling anxious yourself, that's normal for parents/carers and your daughter will adapt way better than you ever will. I'm sure the other parents on here will give you plenty of tips and the Ragnar Hanas book is a must for every type 1.

Rob


----------



## grahams mum (Nov 28, 2011)

hi fortune and welcome to the forum i think you doing really well your night testing  after only 5 weeks  i dont let mi boy go to bed with something lower then 10 /11  then i test as well if he wake up to go to the toilet or i wait to test until 4 , 4:30 am  this is what i do  i am not a doctor so is only my personal experience you will find a lots of parents do what they have learn during the years  about the feet also my boy toe nails they are always bashhed i really keep on eye if tey are getting red or they brake really near the root so dont worry they are children


----------



## HOBIE (Nov 28, 2011)

Hi Fortune i was diagnosed 45 + years ago aged 3.  You sound as though you are doing a GREAT job on your offspring !  Seriously good luck & keep on top of things.       Diabetes care is getting better every day !!


----------



## Bluebaldybob (Nov 29, 2011)

Hi Fortune. 
My wee one was dx type 1 only a few months ago, so I know how your feeling. Personally, I think you did the right thing with the juice and biscuit. We give our wee one a snack before bed, and she sits between the 9-11 mark when she goes to bed. When she gets up in the morning she is about 5-6. Her numbers were all over the place at first but settled down, and we are finding it easier to control her sugar levels now. We were shown how to carb count and had a diet plan worked out before we left the hospital. I would get onto them about carb counting as it makes life a lot easier.
I checked every night at 3-4am for the first few weeks as I found I couldn't settle without knowing Alesha was ok and she wasn't going to hypo, but now I check maybe once a week during the night.
I really thought my world had came to an end and i'm not ashamed to say I cried for days, but there IS light at the end of the tunnel. Things do get better and once into the swing of things it becomes second nature. Just remember you are not on your own, and you now have a great pool of people on here to share your journey. 
A big welcome to the forum


----------



## allanfaye (Nov 29, 2011)

*Hi Fortune*

Sorry to hear about your little girl. My daughter was 2 when she was diagnosed, she is now 14 and doing fine. We have been on our own together for 10 years now. There is a lot of good advice in the replies. Never feel afraid about doing a blood reading, I will quite happily test my daughter during the night if I have concerns, it is better to prevent a hypo if you can than treat it when it has happened. She will inevetably have hypos and do not feel guilty about it. 
You will find it easier as time goes by as your confidence builds but there will be bad times as well as good times. Don't panic. Do pester your daughters health care team for any help you feel you need and do question them if there is anything you are unsure about, no matter how small it may seem to you. They are experts in diabetes management but they will not be experts in your daughter's diabetes and every child is different. You will become that expert over time.


----------



## trophywench (Nov 29, 2011)

I'm very sorry you've had cause to come and find us too.  {{{Hugs}}} for both of you.

An awful lot of the 'mums' on this forum are members of both 'Children with Diabetes' and here - CWD organise some really good seminars and stuff, and Diabetes UK also has various things for kiddies.  Plus depending where you live DUK has support groups all round the country, which hold regular meetings with various speakers and 'experts'.  Some of these groups have fantastic, well supported 'childrens' activities so it's well worth your looking on the DUK website to see what's available near you.  Mums and dads need all the support they can get - as well as the kids being able to mix with other diabetic kiddies, perhaps go on holidays and weekends with/without a parent as they get older.

It does get better, honest!


----------



## Fortune (Nov 29, 2011)

Thanks for all your messages its all very helpful and great to know we are doing OK as theres so much information to take in.  Its nice to know that theres so many of you out there and makes me feel much better in knowing I can post here anytime.  

I will def check the website for any seminars and will def get that book too.

Thanks


----------



## NatashaA (Nov 29, 2011)

Fortune said:


> Hi, I am new to here as my little girl was diagnosed about 5 weeks ago now.  I can't believe it all lead to this as we thought she had a water infection.  She seems to be doing remarkabley well has been so good about the whole process while I on the otherhand am worrying all the time.  She on 5 injections and were not carb counthing yet which is really annoying.  And we can never get hold of the diabetes lady to answer our questions.  I am still abit unsure about testing in the night.
> I did her bloods at 10.30pm last night and they were 4.5 so I woke her up and gave her juice and biscuit - was this correct or should've i waited for her to go lower.  Then because she went a toilet at 12.30pm we re-tested her and she was 9.0 so we left her until morning and it was 7.9.  So what I want to know is what im doing is that right ?  Or should we retested her later.  Also people keep telling me that diabetics have to be careful if they knock there feet - she always knocking her feet she's only 4 - should I be worried.



You sound very much like me.  My daughter was diagnosed just over 5 weeks ago (20th Oct) and had only just turned 6.  I took her to the doctors, thinking that it was a urine infection and a few days on antibiotics would sort it out.  HOW WRONG WAS THAT!!  We were told to go straight to the assessment unit of the hospital where they were expecting us.  Our PDSN is fantastic and I don't lnow how we would have coped without her.  Having read some of the comments, I realise how lucky we are to have her.  

With regard to her levels, we were told that 4 is the floor.  MY daughter was 7.7 this morning and we were quite pleased with that although we are counting carbs and only injecting twice a day.

I wouldn't worry too much about her feet at the moment.  We were advised to make sure that she has well made shoes and ensure that her feet were measured frequently (thank goodness Clarks to charge for a measure!!) but I think its more important in adults than in children.

There's so much to learn and take in, that sometimes I don't know if my brain can cope with any more information.  I still have my bad days, when the tears will fall, but I'm learning all the time and refuse to let this ruin my beautiful girl.  Keep me posted!


----------



## Cayers (Nov 29, 2011)

*Hi*

Hi sorry to hear about your daughter our daughter was diagnosed 12 weeks ago and she is 31/2 such a shock and a constant worry which seems to take over our lives at the mo. She is normally high by bedtime at eight o'clock normally test at ten where she normally drops to 10... If she is below we test at 2am. Still not sure of night times as I know they say to be lower but it's a scary place for us mums ....


----------



## Adrienne (Nov 29, 2011)

Hiya to all the new people, I can't believe there are so many newly diagnosed kiddies.  I just get sad.

We've been at this 11 years now, my daughter is 11 and had her first insulin injection at 5 weeks old so we've been there and got that t-shirt through all the ages and now have hormones, yippee they are fun, NOT 

You will be in your diabetes bubble at the moment where your world has been rocked and all you are focusing on is diabetes.  This is good thing actually whilst you get used to it all before you move to the next stage.

I would imagine from reading the messages that most of the little ones are in honeymoons so levels are behaving themselves pretty much.  I never know whether honeymoon is a good thing or not.  Those children that go into DKA on diagnosis don't seem to have a honeymoon so straight in at the deepend.  I never know whether it gives a false sense of good numbers.

It gives you time to learn.   Knowledge and education is power.  I learn all the time, still.  Things change all the time.  

I see that one of you is not carb counting you and one of you is on mixed insulins.    

Re the carb counting you can teach yourself this.  If you can't get hold of the team then email them, and keep emailing them, they are supposed to be working for you and helping you.  However you can learn, I'm self taught, there are loads of us who are.  Am happy to give you a general idea to get your started.   

Personally I found the idea of carb counting for ever the most daunting thing.  It took a few weeks to get my head around it and then it all falls into place.  On the website Steff gave you there should be carb counting stuff.

Re the twice daily injections.   Oh dear where to start.  Ok right (had to think for a minute).  This is a hard one.  On the Children with Diabetes email group there are around 350 families and I know only two families on mixed injections for which is works !  Not great stats there.  

Apart from the fact it is the farthest removed regime from what a real pancreas does so cannot control any blood sugar levels (this could be different in honeymoon bear in mind) it is so restrictive.  

I am talking from experience as well so not just text book stuff.  They didn't have MDI (lantus or Levemir) when my daughter was born.  On mixeds you have to eat at the same time every day, snacks, correcting highs are very hard on mixes but it is the pressure it puts on family like that is not great due to the strict regime.

Pumping is the best thing for young kiddies to be on and lots of hospitals will put newly diagnosed young ones straight on pumps.   The next best thing for levels and freedom is MDI ie 4 injections a day sometimes more.   However you need to be carb counting to both of these.

Night testing is the most controversial, heated subject you will ever talk about.  It always has been and always will be.    It is hard to say why you night test as we all know why but don't want to say.  Some teams say no need to night test which is just extremely bad and dangerous advice.  The international (not national but international) guidelines say all teams should make the parents aware of the times when there will be lack of hypo awareness.  One of these is nightime.  Studies show that most children do not wake when hypo at night and you can never rely on that.  The guidelines go on to say something like that teams need to advise parents/patients that the only way to see if there are hypos overnight is testing overnight.  

It is as simple as that.  I test overnight, always have done.   The majority of CWD, children with diabetes test overnight, every night.  Some of us are lucky to have the use of CGM  (Continuous Glucose Monitoring systems) attached to our child and they do alarm when levels are low or high so we can treat hypos or correct highs thereby maintaining great levels.

That all makes it sound so simple doesn't it, it isn't.  Like you we all work hard at keeping our kids as healthly as we can.

One thing I will suggest for all newly diagnosed children and this goes so far against the grain you would not believe.  If your child won't drink coke or lucozade then start now.   Seriously.  One day a coke or lucozade could save your child.  Either is by far the quickest thing for raising levels.  Some people use fruit juice and some DSN's recommend it and if it works fine but it is the wrong sugars so doesn't works as well and if you have a serious hypo you will need alternative stuff.

I was the mum who gave my daughter diet coke in MacDonalds aged 2.  Yep that was me.  I got some looks believe me but then other mums gave their children the milkshakes and the sugar and rubbish in them is worse !  Anyway I knew she would need to be able to take the full sugar coke one day.   So for years I gave her sips of diet coke till she liked it and from about age of 4 she has used it for hypo treatments along with lucozade (that was older as kids don't tend to like it much) and it has saved her brain and life more than once which is our priority every time we deal with a hypo.

Sorry, I seem to have gone on and on.  I do tend to once I start.  Do look at the www.childrenwithdiabetesuk.org website, there are a few emails groups you could join.  The main one is very busy but the toddler one is less busy but still plenty of people to help.  

PS  I haven't actually read this back so sorry for any spelling mistakes or grammar stuff !


----------



## Twitchy (Nov 30, 2011)

Hi there  Just wanted to add some reassurance too, along with the others...

I was diagnosed back in '78 at 11 months old...control methods were a bit grim back then (2 jabs, hardly testing etc!) so a scary time for my parents...the reassuring bit is I'm now in my 30s, drive, have a degree, am married with 2 healthy kids & working in my chosen profession (in no particular order lol ).  Things have sometimes been a bit more complicated than for a 'normal' person, and you might see me posting about eye problems sometimes, but these are more down to how long I was on the old methods of control over a long long time, and for your little ones I think the prospects are actually really good - I know it's all very scary right now, but it sounds like all the new mums here are doing wonderfully...and the best thing is you've found this place & CWD which I think of as like the best allies you can get in your life with diabetes.  

Wishing you all, all the very best, especially wishing you peace, hope & joy again this Christmas - things *will* get easier & you will feel some kind of normality again.  Then & now, this is a great place to let off steam when you need to! 

Twitchy xxx


----------



## Adrienne (Nov 30, 2011)

Twitchy said:


> Hi there  Just wanted to add some reassurance too, along with the others...
> 
> I was diagnosed back in '78 at 11 months old...control methods were a bit grim back then (2 jabs, hardly testing etc!) so a scary time for my parents...the reassuring bit is I'm now in my 30s, drive, have a degree, am married with 2 healthy kids & working in my chosen profession (in no particular order lol ).  Things have sometimes been a bit more complicated than for a 'normal' person, and you might see me posting about eye problems sometimes, but these are more down to how long I was on the old methods of control over a long long time, and for your little ones I think the prospects are actually really good - I know it's all very scary right now, but it sounds like all the new mums here are doing wonderfully...and the best thing is you've found this place & CWD which I think of as like the best allies you can get in your life with diabetes.
> 
> ...



What a lovely message Twitchy.

Right back at you wishing you all the best etc etc


----------



## Twitchy (Dec 1, 2011)

Aw, blush!  Mean it though - you mums of diabetic kids are Amazing! xx


----------



## Fortune (Dec 5, 2011)

Hi Adrienne thanks for your detailed information its really helpful.  Can I ask about the CGM - are these avail to anyone and are they worth buying ?  I'd feel alot more happier if Evie went to bed with one of these and then we know when she definately going low.  At the moment we keep having a low every other day (is that right to get low that much) I have got hold of the diabetic lady now and she has suggested reducing her levemir.  

I also can't believe how many young children have recently been diagnosed....its such a testing time for us all.


----------



## Adrienne (Dec 6, 2011)

Hiya

Well unfortunately it is a postcode lottery where CGM is concerned if you want funding for it.

Obviously I do not know your financial circumstances but you do not have to get CGM on prescription like you do an insulin pump.   CGM is not medication so there are many people who do buy them outright.  

However this is expensive.

There are a couple which are integrated with pumps but if not on a pump you can buy stand alone kits.

There is the Medtronic Guardian RT, the Dexcom from Advanced Theraputics and there is also the Navigator (which I do not know as much about).

If you google them you can read up on them.

Medtronic have two sensors you can purchase.   The sensor is the bit you put in the skin which will take the blood sugar readings.    Their latest one out is called the Enlite and they do not hurt as you put them in (it is really quite simple).  They last for 6 days but some people manage to get more time out of them.   I don't know the price of the Guardian.   We have the Medtronic pump and use their sensors as their pump has integrated CGM.

However we did trial the Dexcom earlier this year as I wanted to see if their sensors worked ok for Jessica (my daughter).

I firmly believe that the sensor chooses the person.   Its a bit like insulin pumps and the canulas choose the person as well.   We use a set called a Mio and that works fine for us but others didn't.  

The price of the stand alone Dexcom to give you an idea is ?1075 for the receivor where you would look at the data etc.   You would need to keep that on your daughter (I recommend funky pumpers for a belt with a pocket).  You then need to buy sensors.   If you wanted to use them all the time then at ?62.50 each it will cost a lot.    Lots of people get more than the 7 day wear out of them.    

The Medtronic enlites cost ?52.50 each when bought in a box of 5 (52.50 x 5)  however I don't know the price of the actual receivor.

They are not 100% accurate.  Those that use them wouldn't be without them mind you so even not 100% accurate they are still worth every single penny.

It is only with the use of the Medtronic VEO pump with integrated CGM you get the benefit of the low suspend.   If the sensor says you have hit a certain level (ours is programmed at 3.8 mmol) the pump actually cuts out so not more insulin goes in until there is user intevention.    This is great for nighttime.  If I don't hear the alarms it is my safety back up.    

You may attend a hospital with a proactive consultant who is all for CGM, ask when you go or email them to enquire about it.    He can put a case together for you so he can apply to your PCT for funding for  CGMS and see what happens.  It is hard to get funding for this but I think things will be changing by 2013, there are huge changes on the horizon.

If you want my first bit of advice, go get a pump.    It will be life changing for you all.    The younger a child goes on a pump and the sooner there is great control the better it is for your child and their health.   

I hope that explains a bit.


----------



## nina bailey (Jan 2, 2012)

hi

welcome to the forum. xxxxx


----------



## mum2westiesGill (Jan 3, 2012)

Hi Fortune,

I'm not a parent on here, i've been type 1 diabetic since 1992, i joined the forum in Sept 2011, there's some great people on here & it's where i've picked up / learned more than i have done in the last 20years, i couldn't be without this forum now  

Wishing you the best of luck with your little girl 


_Gill_


----------



## Ruth Goode (Jan 13, 2012)

just want to say welcome, hope it's all going well for you all


----------

