Newbie parent

[Conrad howell]

Hi my 15yr son has just came out of hospital after being diagnosed with type 1 diabetes, he's been amazing, learning to do his blood levels and injections, and taking it in his stride, we had a few moments as parents of blaming ourselves, not seeing the signs as quickly as maybe we should have , he started getting obsessed with drinks, and using the toilet, I just thought he was getting a little habit of drinking and the the weeing was through the drinking.
being a 15 year old, he spent a lot of time upstairs on his Xbox, so it wasn't till the day his mum checked his symptoms with google that I realised the sudden weight loss, looking at him in just a pair of shorts we realised how bad he was. His blood levels were 31 when we got him to hospital.
So we are at home now his bloods are still settling down this morning's reading was 9.4 the lowest reading he's had for 3 days, he's on 7 units of novorapid before meals and 14 units of lantus before bed, but I think the nova dose may go up, I'm seeing how today's results are and I may phone the specialist if they are still high, they did say it may take some time to settle, many meetings with diabetes specialists, dietitician, etc has left our head's spinning, so I joined this forum to hopefully get some information on making things as easy for my son as possible .
Thanks
Conrad

 

[Northerner]

Hi Conrad, welcome to the forum 🙂 Sorry to hear about your son's diagnosis You shouldn't blame yourself for not spotting the symptoms, they are often explained away by other possibilities. The good thing is that, now he is getting the insulin he needs, he will be feeling so much better, and probably hadn't realised how bad he was before - I know that was certainly my own experience!

Good to hear that he is managing well with his injections and tests and doesn't sound phased by them - it's a very positive start 🙂 It's important to stress that Type 1 does not have to stop him doing anything he wants to do (apart from a very few jobs) - there are people at the very top of their chosen sports and careers who manage perfectly well 🙂

There is a huge learning curve to begin with, but things will eventually become more routine. At first it's learning the 'big' things, but eventually it becomes more 'fine-tuning', with the occasional curved ball to keep us on our toes! I would highly recommend getting a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas , not cheap, but invaluable and covers every aspect of living with Type 1.

Try to take things at a pace you can absorb the information, and if anything confuses or concerns you, please ask - there are lots of very friendly and experienced people here who will be able to help 🙂

 

[Conrad howell]

Thanks Northerner
I will certainly look up the book
I'm sure as a family unit we'll do our best to make our son's life a bit easier.
And I look forward to using the forum thanks
Con

 

[Stitch147]

Hi and welcome to the forum.

 

[JazzieJamJay]

Hi Conrad,
I had a very similar experience to your son when I was diagnosed in 1999 (12 years old)

My parents felt really guilty about how they had missed the symptoms too, they simply reasoned that I was growing up or going through a phase. They did almost everything for me in an attempt to shoulder the burden (I also got a trip to Alton Towers as an apology!) At the time it was great, but when I was older it became clear that by doing everything, I had no idea what I was doing! So make sure your son is involved with decision making and is aware of how things are progressing.

I imagine your son is also feeling SOOO much better now he is getting insulin. I still remember being in hospital and being given a cup of diluting juice, I put it down on the bed side table and got comfy on the bed. I would normally then finish the juice in about 0.6 seconds, but this time I forgot about it completely. It was only when my parents came to visit and noticed a full cup of juice that hadn't been touched that I realised how much better I felt. I still have a picture of it somewhere! It really was a Kodak moment!

All the best to your family! Don't let this horrible condition get in the way!

 

[Gary S]

Hi my 15yr son has just came out of hospital after being diagnosed with type 1 diabetes, he's been amazing, learning to do his blood levels and injections, and taking it in his stride, we had a few moments as parents of blaming ourselves, not seeing the signs as quickly as maybe we should have , he started getting obsessed with drinks, and using the toilet, I just thought he was getting a little habit of drinking and the the weeing was through the drinking.
being a 15 year old, he spent a lot of time upstairs on his Xbox, so it wasn't till the day his mum checked his symptoms with google that I realised the sudden weight loss, looking at him in just a pair of shorts we realised how bad he was. His blood levels were 31 when we got him to hospital.
So we are at home now his bloods are still settling down this morning's reading was 9.4 the lowest reading he's had for 3 days, he's on 7 units of novorapid before meals and 14 units of lantus before bed, but I think the nova dose may go up, I'm seeing how today's results are and I may phone the specialist if they are still high, they did say it may take some time to settle, many meetings with diabetes specialists, dietitician, etc has left our head's spinning, so I joined this forum to hopefully get some information on making things as easy for my son as possible .
Thanks
Conrad

Hello
The specialist team are just getting your sons body used to insulin and bringing his sugar levels down to normal(ish) levels, hence just the 7 units of Novorapid at the moment, and to allow him to put some much needed weight back on, which was a standard procedure that I went through 20 years ago and perfectly normal.
It will be a great relief to him to know now what has been wrong with him and how to move forward, and if he can keep that up, which he seems to be doing, then half the battle is won.
It is an awful time for you but things will get better. There is a lot to learn but it does get easier.
I'm sure the next step for you all will be to learn how to carb count and to work out the carbs to novo ratio, so that you/he can work out how much novo to inject, which is simpler than it sounds. I have found two things absolutely invaluable for this.
One is the Diabetes Uk "Carbs & Cals pocket counter by Chris Cheyette & Yello Balolia" from Amazon for £7ish + p&p. I've had mine for years and use it pretty much every day. It's either on me when away as it gives an accurate reading for a full meal when eating out, or I use it at home.
The other is an accurate digital scale in which to weigh out the carbs in a meal. I use an "Ozeri ultra thin professional" food scale for £15 inc p+p again from Amazon. It has a tare function so you can switch it on, put a plate on it and the scale measures zero. Then add the carbs (pasta, potatoes. rice etc) and it gives you a reading of how many grams of carbs you have added.Then using the book you can work out how much carbs it is.
Eg: Cooked pasta shells have 50 grams of carbs per 148g. If the plate on the scales shows 120 grams, then using a calculator i put in 50 divided by 148 times by 120 = 40.5 giving you the correct amount of carbs. It's easier than it sounds.
Please don't buy these things yet as your Diabetes team may have other ideas, and they have all the latest info.
On a departing note, please don't despair. Thanks to Diabetes my taste buds changed as I began to eat healthier. I'm 45, very fit for my age (or younger) and have tons of energy. My Hba1c for last year was 6.5 and blood pressure and cholesterol are normal.
And please remember, you only have to work out how much insulin to inject one meal at at time!
Good luck to you all for the future and have a great Christmas
Kind Regards
Gary

 

[trophywench]

Hello
And please remember, you only have to work out how much insulin to inject one meal at at time!

No - you and your son need to do this together !! - and it assumes that his basal dose is correct in the first place of course - which actually it's most unlikely to be - yet. Then once you've got it right (when you've learned quite a bit more than what you know already) it doesn't stay right for evermore - cos bodies change depending on about a million different things - age coupled with growth and other hormones - male or female ones as well as the unisex bodily functions ones - the weather - exercise - food - alcohol - whether there's an R in the month ......

However! - your son's team will guide you through all this bit by bit - but the book Alan recommended is an absolutely A1 place to start - you ALL need to read it and chat about what you discover - don't try to take it all in at once cos it's FAR too big a subject to do that. I really wish that there had been such a book when I was diagnosed - how the hell am I still alive? LOL It's also one of the books I see every time I go to my hospital diabetes clinic - since it's on the nurses bookshelves, unless it's on her desk with post-it notes in it, which mark pages with the explanations and answers to things her - adult usually - patients have asked!

It's a marathon, not a sprint - and you'll all get to the finish line eventually - but I haven't reached it yet and don't intend doing so for quite a while. And I usually learn something new every day ........

 

[robert@fm]

Regarding that Carbs And Cals counter, if you have a smartphone (or at least an Android one, don't know about iOS) the Carbs And Cals app is probably more useful, and definitely cheaper (£3.99, and if you change phone simply re-install it for no extra charge).

 

[JazzieJamJay]

Regarding that Carbs And Cals counter, if you have a smartphone (or at least an Android one, don't know about iOS) the Carbs And Cals app is probably more useful, and definitely cheaper (£3.99, and if you change phone simply re-install it for no extra charge).

Its on iOS too 🙂

 

[SB2015]

Adjusting your son's insulin doses will take a bit of time, as his BG levels come down and things gradually settle. Then the DSNs will work with him and you to learn how to make changed to these to match what he eats and what he is doing.

Just work together on it and take things step by step.
Keep asking questions and there are people on here who will happily help.
There will be different views on how best to do things, but just remember that we are all different and through regular testing your son will find out what works for him.

 

[Conrad howell]

Thanks for the great info, my son is really involved in all the decision making, we normally do our shop online but have decided to go to the supermarket with him so he can start looking at a few labels and plan things out with us,
Quite a few people have mentioned the carbs and Cal's book so we'll order that

 

[Conrad howell]

Hi Conrad,
I had a very similar experience to your son when I was diagnosed in 1999 (12 years old)

My parents felt really guilty about how they had missed the symptoms too, they simply reasoned that I was growing up or going through a phase. They did almost everything for me in an attempt to shoulder the burden (I also got a trip to Alton Towers as an apology!) At the time it was great, but when I was older it became clear that by doing everything, I had no idea what I was doing! So make sure your son is involved with decision making and is aware of how things are progressing.

I imagine your son is also feeling SOOO much better now he is getting insulin. I still remember being in hospital and being given a cup of diluting juice, I put it down on the bed side table and got comfy on the bed. I would normally then finish the juice in about 0.6 seconds, but this time I forgot about it completely. It was only when my parents came to visit and noticed a full cup of juice that hadn't been touched that I realised how much better I felt. I still have a picture of it somewhere! It really was a Kodak moment!

All the best to your family! Don't let this horrible condition get in the way!

Thanks mate
such a similar story to ours, he was obsessed with drinking before the diagnosis, hasn't really mentioned drinking since, he's really getting involved bless him

 

[Conrad howell]

Hello
The specialist team are just getting your sons body used to insulin and bringing his sugar levels down to normal(ish) levels, hence just the 7 units of Novorapid at the moment, and to allow him to put some much needed weight back on, which was a standard procedure that I went through 20 years ago and perfectly normal.
It will be a great relief to him to know now what has been wrong with him and how to move forward, and if he can keep that up, which he seems to be doing, then half the battle is won.
It is an awful time for you but things will get better. There is a lot to learn but it does get easier.
I'm sure the next step for you all will be to learn how to carb count and to work out the carbs to novo ratio, so that you/he can work out how much novo to inject, which is simpler than it sounds. I have found two things absolutely invaluable for this.
One is the Diabetes Uk "Carbs & Cals pocket counter by Chris Cheyette & Yello Balolia" from Amazon for £7ish + p&p. I've had mine for years and use it pretty much every day. It's either on me when away as it gives an accurate reading for a full meal when eating out, or I use it at home.
The other is an accurate digital scale in which to weigh out the carbs in a meal. I use an "Ozeri ultra thin professional" food scale for £15 inc p+p again from Amazon. It has a tare function so you can switch it on, put a plate on it and the scale measures zero. Then add the carbs (pasta, potatoes. rice etc) and it gives you a reading of how many grams of carbs you have added.Then using the book you can work out how much carbs it is.
Eg: Cooked pasta shells have 50 grams of carbs per 148g. If the plate on the scales shows 120 grams, then using a calculator i put in 50 divided by 148 times by 120 = 40.5 giving you the correct amount of carbs. It's easier than it sounds.
Please don't buy these things yet as your Diabetes team may have other ideas, and they have all the latest info.
On a departing note, please don't despair. Thanks to Diabetes my taste buds changed as I began to eat healthier. I'm 45, very fit for my age (or younger) and have tons of energy. My Hba1c for last year was 6.5 and blood pressure and cholesterol are normal.
And please remember, you only have to work out how much insulin to inject one meal at at time!
Good luck to you all for the future and have a great Christmas
Kind Regards
Gary

Thanks Gary
We have already we have already purchased some scales which are brilliant, and the book will be next, Thanks for the great advice

 

[Northerner]

Thanks mate
such a similar story to ours, he was obsessed with drinking before the diagnosis, hasn't really mentioned drinking since, he's really getting involved bless him

I was drinking 30-40 pints of milk a week not long before my diagnosis! 😱 I didn't know it then, but do know now that it wasn't just the liquid I was craving, but also the sugar (in the form of lactose) in the milk. Probably wasn't helping me one bit! 😱

 

[Lindsey#newbie]

Hi everyone... I'm Conrad's wife, so Mum to Tyler (who is the newbie Diabetic)... The relief knowing we're not alone and there are people here to help is a real comfort... Our son had a real moment tonight in the kitchen and in a way I'm glad it was done WITH us and not alone... So much to take in and he's been so brave!! His bloods were really nicely in the "normal" margin yesterday but quite high all day today (15.5 tonight)... Is this normal to fluctuate so much? He's only 5 days diagnosed so we're trying not to obsess whenever he tests his levels and his ketones are LO.... First day back at school though too so thinking he was a bit stressed ....

 

[trophywench]

Yup - it is normal - it's normal cos he's newly diagnosed, he's normal because he is stressed - it's a right kick in the head to find you've got this, and he's perfectly old and intelligent enough to know that a) it's serious and could kill him (or cause VILE complications if he doesn't get it right) b) it's never going to go away and c) he doesn't yet know how to BEHAVE - cos he realises absolutely everything in his whole life, has now CHANGED.

I certainly don't mean ANY of the following as criticism - so please please don't imagine it is - it's very hard to put into words. I'm a parent, grandparent and great-grandparent myself ......

Despite you being there blah blah - I mean, I was married when diagnosed so I had a husband, who was brill at comforting me, and I needed that, a LOT - but you'd be utterly gobsmacked at how ALONE this makes you feel, even though you aren't physically alone and everyone round you says the 'right' things and assures you that you aren't emotionally alone - Oh yes, you are, right now. And you also know that they don't actually know how you really feel, no matter how hard they try - cos no-one else is actually you, are they! - so you have to learn to deal with the mixed emotions you feel about that too. Hell at his age, when you've had problems before your mum and dad really have always helped you - they were kids themselves - and actually do appreciate what it was like, so you know they empathise with whatever it may be, although the circs are always different, they understand the emotions very well. This time - they simply CAN'T - cos they absolutely haven't been there! It really is entirely different to anything else, this one.

I later always jokingly refer to this time as the 'Lost, alone and unloved' period. Trying to be 'normal' whilst doing all these things you now have to do to prevent yourself dropping dead, that you hadn't even ever heard of only last week, is just FLIPPIN hard.

Any sort of stress - whether it's good stress like being excited or being on one of the rides at Alton Towers, or 'bad' stress eg exams or worrying about absolutely anything (and this one's a double double treble whammy) - affects the blood glucose every single time - but sometimes will make it plummet instead of sending it sky high and just because the last time this happened (whatever it happened to be) the BG increased, never means it will do just the same this time, or the next ! You just have to learn to trust your meter - but if ever it's surprisingly high or low and you haven't a clue, start again - wash the hands and test again using another digit. Only if you get the same-ish answer, then believe it!

You're all doing well at the mo, considering, so jolly well done so far!

 

[Gary S]

Hi Tyler,
I concur of course, great advise from the last reply. Stress will do strange things to your sugar levels, although for me it's always an increase, personally.
It's just something to be dealt with, and forgotten about and move on as there isn't a lot, apart from an insulin correction dose, that you can do about it.
Stress is a perfectly normal part of life whether good or bad.
Keep up the good work, as it sound like your son has an excellent back up crew in his parents.