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Son 20 months just diagnosed with type 1

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M

Martin-Parent

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Relationship to Diabetes
Parent of person with diabetes
Hi there,

Our son was diagnosed a month ago with type 1 diabetes. He was very ill for about a week but thankfully since has started to recover at an amazing rate. As his parents, we have gone through the initial shock stage and were just getting to grips with his readings when last week he hit his honeymoon period, we think! His readings are now all over the place and we have just switched support nurse and he has had his first hypo which we wouldn't have noticed if it weren't for the reading and the other day we missed giving him his morning jab for the first time and he has just, today started back at nursery. All this equals a great deal of stress for my wife and I.

So I thought it was time to go out in the open and say hi to a few like minded parents. So hi there.
 
Hi Martin and welcome, though sorry you need to be here. Your story is very similar to mine ( and too many others!) our son was almost 18mths old and suddenly was very ill, also in hospital for a week. Since then however he has come on leaps and bounds as you'd expect with any other child and is not held back at all by diabetes. It is a hugely stressful time but it sounds like your doing really well. I have missed more than the occasional hypo and forgot the odd injection as well as countless other mishaps - but then that's life as a parent and you can't waste time beating yourself up about the little things - it is really hard work adjusting to this but it does get easier. Other folk will be along soon with useful links, books etc. There is a really useful thread by Adrienne for new parents that is worth a read - think it might be at top of parents section. Anyway there's always someone on hand here with advice or words of support.
Ruth
 
Welcome Martin-parent

If you haven't already found it, then please look at the very helpful "sticky" "essential guide for parents of children with type 1 diabetes" (approximate title), written by Adrienne, a mother of a child with type 1 diabetes since babyhood - see http://www.diabetessupport.co.uk/boards/showthread.php?t=23853
 
Welcome Martin

My daughter was 10 when diagnosed ( almost 5 years ago), but it took me another 3 years before finding this brilliant forum.
 
Hi Martin

Sorry you have to be here - but one thing you will get in shedloads here, is support.
 
Welcome from me Martin....................

This must be a really difficult time for you and the wife, you are not alone though, there are many other going through the same thing who will be able to help you through the tough bits........🙂
 
Thank you all for your quick response to my post.

@ruthelliot - It does indeed seem that our stories are very similar. How long ago was your son diagnosed? Did you start counting carbs straight away, as we are still not doing that. We are using a base dose and then increasing it based on the readings before each meal time.

@Copepod - Thanks for the link. I have read that post and actually found it a little controversial. It goes directly against a lot of the advice that we have been given by what seems a very good team of support nurses and doctors in North Manchester. We have been told that pumps are more trouble than they are worth to begin with and are not counting carbs yet as we don't feel we are ready for that, also as our support nurse changed last week the previous one didn't want to confuse us.

@ everyone else - thank you so much for your kind words. It is very hard going at the moment, but at least our son seems to be coping well with it. It's just us who are struggling. It is so stressful as there are so many firsts happening all at the same time and until we have experienced them all, despite knowing that they probably won't do him any harm at all, it is difficult not to see each one causing our little boy some harm. Setting every alarm in the house so you don't miss an injection, or every moment that he might have a hypo and we might miss it. It's so difficult as we don't know any of the signs yet.
 
I can understand why you say controversial if that's what been said. I am once more rendered almost speechless by some of the utterly c**p advice handed out by some of these so-called experts.

However, how many babies with T1 diabetes does that nurse have to cope with at home, 24/7?

And other than that I'm not going to comment .......
 
PS Bob, as I haven't read Adrienne's advice not having a cild with D - does she point you to

a) Ragnar Hanas' book - Type 1 Diabetes in Children Adolescents and Young Adults

and

b) www.childrenwithdiabetes.co.uk

both of which can be of very great help to you.
 
Thanks trophywench, we already have that book which is a fantastic resource and highly recommended, although there are one or two areas in it which our nurse has not recommend we follow such as injecting at a 45 degree angle.
 
Hi Martin and a warm welcome to the forum x
 
Hi Martin,
Our son will be 5 in April - where did the last 3 yrs go! We started carb counting I think a month or so in - it was hard as the honeymoon period really messes with things and it hard to see how much the carb counting is helping but I soon realised how far out some of our recommended doses were. I can honestly say no one could have been more meticulous with carb counting, feeding times etc but at 3 and a half yrs old we had achieved an unsustainable hba1c of 7.9 - this was only through constant blood checking including several times every night ( cue the equally controversial advice about night checks!). It was at this point we finally managed to get a pump and for us it has been life changing - the improvement in control and Ben's quality of life is immense. I wish we'd had it much earlier - although not before you're very happy carb counting. Carb counting can seem daunting but anyone who has ever dieted and counted calories will know how quickly these things become imprinted on your mind - within a few months you can rhyme off carb values like your times tables! I would strongly disagree with pumps ever being more hassle than there worth - obviously no one regime will suit every case and pumps are a lot of work initially but knowing I'm getting the best control possible, finally seeing benefits to the hard work and lost sleep - so so worth it. Also remember its hard enough at times figuring out what any 20mth old is feeling/ trying to tell you and he will take a while to recognise all the hypo/ hyper feelings and then he has to learn to tell you but it will come - no doubt you'll have a few more grey hairs and worry lines by then! Feel free to ask any questions on threads or by message.
 
Martin-Parent said:
Thank you all for your quick response to my post.

@ruthelliot - It does indeed seem that our stories are very similar. How long ago was your son diagnosed? Did you start counting carbs straight away, as we are still not doing that. We are using a base dose and then increasing it based on the readings before each meal time.

@Copepod - Thanks for the link. I have read that post and actually found it a little controversial. It goes directly against a lot of the advice that we have been given by what seems a very good team of support nurses and doctors in North Manchester. We have been told that pumps are more trouble than they are worth to begin with and are not counting carbs yet as we don't feel we are ready for that, also as our support nurse changed last week the previous one didn't want to confuse us.

@ everyone else - thank you so much for your kind words. It is very hard going at the moment, but at least our son seems to be coping well with it. It's just us who are struggling. It is so stressful as there are so many firsts happening all at the same time and until we have experienced them all, despite knowing that they probably won't do him any harm at all, it is difficult not to see each one causing our little boy some harm. Setting every alarm in the house so you don't miss an injection, or every moment that he might have a hypo and we might miss it. It's so difficult as we don't know any of the signs yet.
Click to expand...

I can see why you comment on the controversial aspect of Adrienne's advice, but it's based on a real mother's real experiencese. The basic advice that MDI (Multiple Daily Injections, long acting insulin once or twice a day, plus short acting with each meal, usually 3 per day) is more flexible than bimodal (twice daily insulin) and that carb counting is the key to all management of type 1 diabetes holds true. Pumps are only given if good control can't be acheived with suitable education & support. You're right to recognise that it's important to get to know and trust YOUR local diabetes team. Only if they can't help / support you adequately should you need to look at other teams. As a start to carb counting, it's worth noticing where you can find nutritional information eg on food packets, trayliners of fast food restaurants, websites etc, and usually there is carbohydrate g per 100g of product, adn sometimes also expressed as grams of carbohydrate per portion. It's not sugar alone that's important.
 
Hi and a warm welcome from me , though sorry you have to be here!

The forum has been an excellent source of info and support for me, esp when friends just don't get it. It can feel a bit lonely sometimes in my experience.

It is especially hard with such a young child, so hard to see signs when hypo etc And feeling guilty that you haven't picked up on something, or your actions have resulted in x y or z
😱

You will find what suits your child and your family in terms of regimes I'm sure.
Plenty of people here with lots of different experiences of treatments etc

Best wishes 🙂
 
Hi Martin

Welcome but sorry you have to be here. It is heart wrenching when your child gets diagnosed whatever age.

I am the one that wrote the 'controversial' post. As Copepod has said this is from my experience. I still learn lots, we all learn but there is nothing like hearing stuff from the people actually living it like everyone here.

I absolutely catergorically 100% disagree with whomever said pumps are more hassle than they are worth. I'm sorry Martin and I am not disagreeing with you as you have not tried a pump so don't know and can only go by what the medical team are saying. They are wrong. It really is that simple to state and that is a fact. They are a closest thing to a working pancreas, how can that be more hassle than its worth.

I've lived through nearly 13 years of type 1 in my daughter (she will be 12 years old in a few months). We have covered most of the insulins around and ones that are now obsolete. We haven't tried animal insulin mind you as that was phased out before my daughter was born. There is nothing like a pump and if you add on CGM to that, you can only be winning.

It is my opinion but it is also the opinion of hundreds of other families as well. I wonder how many children your hospital have on a pump and what their experience is of pumping. That would be interesting. The younger you can get a child on a pump the better chance of better levels from day one which can only be a health benefit to them. Some hospitals now in the UK put a child on a pump immediately they are diagnosed. They will maybe have a couple of days of MDI until a pump is ordered but they recognise it is the way forward.

If our children had been born in Europe then many countries use pumps from day one.

However I happy to help as is all the people here, they are a very friend bunch and have a wealth of knowledge.

Take care 🙂
 
Hear Hear Adrienne - and by no means unusually - you put it far more diplomatically than me!
 
Hi Adrienne,

Thanks for your comments. Perhaps my comment that they were more trouble than they are worth was over dramatizing a little the advice that we have been given. We were told that they were an option, but you have to do a lot more checking and monitoring. We were advised that it is important to get a full understanding of how diabetes works before taking the step of using a pump.

Our routine is currently that we give 3 doses of fast acting insulin at each meal time. We test once before and give the insulin just after depending on how much he eats (he is only 21 months so this could change the carb intake a lot). We also test and give a long lasting insulin just before bed. We would only night test if we were worried about the night time reading or if he woke up, which he thankfully doesn't often do so we haven't done this often.

We are on week 5 and have been using a base insulin dose and increasing it based on a simple scale of blood sugar readings. We are just about to change over to carb counting which has probably come at about the right time for us as there is no way that we could have coped with it before now.

Having done a little research on pumps, I can definitely see the benefit, but they do involve a lot more checking than we are currently doing. Also, as he is so young, there is no way that I would trust him not to tamper with the machine as he would rip it off and press all of the buttons and it would cause far more harm than good. So we have decided to leave it for at least 8 months until he is 2 1/2 and then investigate again.

Thanks again...
 
Martin-Parent said:
Hi Adrienne,

Thanks for your comments. Perhaps my comment that they were more trouble than they are worth was over dramatizing a little the advice that we have been given. We were told that they were an option, but you have to do a lot more checking and monitoring. We were advised that it is important to get a full understanding of how diabetes works before taking the step of using a pump.

Our routine is currently that we give 3 doses of fast acting insulin at each meal time. We test once before and give the insulin just after depending on how much he eats (he is only 21 months so this could change the carb intake a lot). We also test and give a long lasting insulin just before bed. We would only night test if we were worried about the night time reading or if he woke up, which he thankfully doesn't often do so we haven't done this often.

We are on week 5 and have been using a base insulin dose and increasing it based on a simple scale of blood sugar readings. We are just about to change over to carb counting which has probably come at about the right time for us as there is no way that we could have coped with it before now.

Having done a little research on pumps, I can definitely see the benefit, but they do involve a lot more checking than we are currently doing. Also, as he is so young, there is no way that I would trust him not to tamper with the machine as he would rip it off and press all of the buttons and it would cause far more harm than good. So we have decided to leave it for at least 8 months until he is 2 1/2 and then investigate again.

Thanks again...
Click to expand...

Hiya Martin

Don't worry, I wasn't critisizing you at all, I have just had enough of medical teams who I think are just lazy and not up to date and when I hear what has been said I just see red and it isn't fair to parents.

The regime you are on is called MDI, multiple daily injections, although you probably know that.

Once you are carb counting it will make a lot more sense to you. The MDI regime won't work properly without carb counting so its great you are ready to do this. Can I 100% recommend Carbs and Cals to you. It is a book and also an iphone app and now an android app. It is visual as well as using weights and numbers and I reckon, by listening to others, one of the most popular aids in carb counting. We use it and my daughter uses it at school herself.

Once you are carb counting you should be testing around 2 hours after eating so that you know the ratios are right but your team will tell you this.

Also just a huge biggie bit of info for you, the majority of children are hypo unaware at night and do not wake up if hypo. There are studies on this to back that up. So many teams tell newly diagnosed families not to worry as their child will definitely wake up, wrong.

Night testing is the biggest controversial subject for parents with children with diabetes. People fall out over it, seriously they do. Facebook is full of groups where these arguments happen on a daily basis. If you want any info on night testing I can send you a link to ISPAD which are the international guidelines and they are very clear about nightime hypos. ISPAD is the International Society for Paediatrics and Adolescent Diabetes.

Lots is happening in the world of pumps at the moment so when you are ready there will be loads of new exciting opportunities for you, which will be great.

Take care
 
Thanks Adrienne,

I understand what you are saying. We are getting good support so far in North Manchester so I am happy to stick with what they say for now as things are starting to sort themselves out. We haven't been told to test 2 hours after meals when carb counting though as we are relying on the test before the next meal to tell us how accurate the previous one was. So we are still checking and jabbing only 4 times per day each.

I have been avoiding getting drawn into the night test debate as it seems quite an emotive one and all I have is the advice that I have been given. And this is that if we suddenly get high readings first thing in the morning only then do we need to look into night hypos. As his morning readings have been the most consistent (low teens and single figures), we are happy not to night test for now.

Thanks for all of the advice.
 
Hi

Welcome to such a useful site. My daughter too was only diagnoses 3 1/2months ago. She is just 4 and it certainly has been a life changing experience. We are now on 4injections and carb counting due to most of the info I read from this site. We are actually starting a pump next week and really hoping this will help as such positive comments . We seem to be running either very high or low so really hoping the pump will be the answer. I think due to the snacks on the MDI routine Molly just can't manage them and the thought of more injections and marks doesn't appeal.

Anyway good luck stay positive and strong..xx
 
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