# just diagnosed



## nina bailey (Dec 22, 2011)

Hi,  my son Mason has recently been diagnosed with type 1 in November 2011.  at the minute, my life revolves round food, injections, testing blood etc, etc.  just discovered this forum and though id say hi


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## Northerner (Dec 22, 2011)

Hi Nina, welcome to the forum  Very sorry to hear about your son's diagnosis - hopefully we can help you through things. Have a look at the Useful links thread for some good resources that can help provide additional information and support. I would highly recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas. It will explain everything you need to know about living with Type 1 and is an invaluable reference and guide. Plus, of course, you are more than welcome to ask any questions you may have - nothing is considered 'silly', so ask away!

What insulin regime is he on and how was he diagnosed?


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## Mark T (Dec 22, 2011)

Welcome to the forums Nina


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## nina bailey (Dec 22, 2011)

hi, thanks for replying.   I have got loads of questions!!   my first question is that he is 14.2 at the minute.   he has had his night time injection so what do we do to bring it down???   its all really new and im just not sure what to do.

his symptoms were he had wet the bed twice but as he was going on a school trip i just thought he was worried about being away from home.   he then started with the drinking which i think i only noticed because he started drinking out of the bathroom tap.  he plays for a local football team and he just said one night that he didnt want to go as he was tired (which is not like him as hes never missed footie practice).  i didnt really notice the weight loss as he is skinny and just thought he was fit.  i just took him to the doctors and then the rest is history - straight to hospital to be told he weighed 3 and a half stone (he is 10).  i think thats what upset me the most as i should have noticed that he had lost weight.  i just feel really guilty.   his blood levels when he went into hospital were 28 and was told if we had left him another 2 days, it would be a totally different story.  that scared the hell out of me and just so glad i took him to the docs when i did.   

im so proud how hes dealing with it though but we are having a lot of anger and cheek, which i know a 10 year old does, but it seems different somehow.  he's not much of  a talker  and i never know what he feels.   maybe things will calm down in time but its such a life change.


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## Northerner (Dec 22, 2011)

Hi Nina, it is still very early days, so it will take a while for things to settle down and sink in. It's a big shock for all of you, but things will get better in time - there is lots of support from parents who are in, or have been in, your position. It will take a little time to get used to what the numbers all mean and what may be causing them. Is he on fixed amounts of insulin, or have you been taught how to adjust it according to what he is eating and how active he is? This is called carb-counting, and is a way of matching insulin doses to food, whilst also taking into account the fact that activity may reduce insulin requirements.

You should speak to your DSN (Diabetes Specialist Nurse) about 'correction' doses if it has not been discussed already. This is an extra dose of fast-acting insulin that will reduce his blood sugar levels by a certain amount. You need to work out with the nurse what a safe and appropriate dose would be. For example, if I was 14.5 then I could take 2 units of novorapid to reduce my levels by 6 mmol/l. This approach is only possible if he is on a fast-acting insulin with his meals and a slow-acting insulin at night.

And don't beat your self up about not spotting the symptoms - lots of doctors miss them too! The main thing is that he is diagnosed now and receiving treatment, and there is no reason why he should not be able to continue to enjoy all the things he did before - it will just take a little more planning


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## trophywench (Dec 22, 2011)

Hi Nina

Well of course he's angry!  I was flipping angry and I was 22 !  How very dare it interfere in my life?  etc etc etc.  Not to mention Why Me ?

God knows how I'd have coped with it aged 10, with hormones ..... and having your mother fussing round you isn't exactly cool esp when you is A Boy.

LOL !  Poor ole Mason I say.  There is a grieving process that we have to go through when we get owt like D.  It's common to all chronic conditions, so it's not at all unusual to hear what you are saying about your son.

So .....

What insulins is he on, fixed doses or matching fast-acting insulin to carbs eaten?  What was his BG before tea and 2 hours after?

If we know that, we might be able to hazard some guesses that might help in future ......

By the way - there's actually a site specially for parents of children with diabetes - see

http://www.childrenwithdiabetesuk.org/

and most of the 'mums and dads of' on this forum are also members of CWD and use both arenas.


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## grahams mum (Dec 22, 2011)

hi welcome if he was graham to stay on the safe side i would do only 0.5 check him during the night see how he wake up tomorrow morning but you better check with your nurse first my boy is 4 years that has been diagnosed and i feel quite confident now  i am sure it still a lot for you to learn even though your son is 10 and he can do a lots of the medication by himself


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## Robster65 (Dec 22, 2011)

Hi Nina. Welcome 

Have you had a look at the sticky post aimed at parents ?

http://www.diabetessupport.co.uk/boards/showthread.php?t=23853


Rob


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## Adrienne (Dec 23, 2011)

Hiya Nina

I'm so sorry you have had to find us but welcome and this is a great group to belong to.    There is a wealth of knowledge here from adults with type 1, 2 etc and parents as well.

My daughter is 11 years old, hormone city, and she has been type 1 for those 11 years.   We never had the greiving process as it was pretty much from birth.

However I know 100's, unfortunately, of children with type 1.    There is an email group  you can join which is a support group for parents.   We have our own website which has already been mentioned but I'll say it again anyway 

www.childrenwithdiabetesuk.org 

You can join the email group from that website.  Its quite quiet at the moment as its Christmas and there have been two knew parents join this week already.    Take a look.

I use both here and there and both have their places in my life and I love both.

I think you need to give your nurse / consultant a ring in the morning.  You need to ask about how much insulin (novorapid) to give to bring down high levels.    As it is Christmas I have a feeling you are going to see some higher levels.

Do you have a ketone blood monitor?  If not, ask your DSN for one, they should give you one.

The anger, yep all part and parcel.    Is he having swings in his blood sugars, up and down, that could all contribute to the anger and moods.

Also he is going through a mourning process, this will have thrown him and he needs to get his head around it which is damned hard for a 10 year old.

You will no doubt be going through your own grieving process.  This is totally normal and you will be in your diabetes bubble a long while yet and that is just fine and is a good thing whilst you learn and gather knowledge to help your son and yourselves readjust.

Where abouts are you in the country.   If you don't want to put that, please feel free to private message me or email me.    I may know people near you so that you can touch base with other families.  It is so important not to feel isolated and this is a lonely condition.     My greatest friends now are those who have children with diabetes.   We understand one another and get how hard it is sometimes.   We have all found that over time, our kids with diabetes would rather be with other children who have diabetes as well.  This isn't a bad thing either as they have this huge responsibility on their shoulders and can look after each other and just know what the other is feeling to a certain extent, plus it makes them feel normal.

Anyway take care.


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## nina bailey (Dec 23, 2011)

right, see if i can get this right

he initially was told to be on 1:15 carbs but we found he was having a lot of hypos which was put down to his pancreas still working.   This seemed to happen after dinner so i upped his dose at dinner to 1:20 and eventually all of his meals to that.   he was still having hypos but less.   now it just seems to have reversed and he maybe has one or two a day but being over 10 more often.   could this mean that his pancreas has stopped working all together now?   the doc/nurse said i could change he doses myself  so i am thinking to drop it back down to 1:15 to see if that makes a difference.  do you think this is the right thing to do??  he is on 7 units of night time insulin but that seems OK, on a few occasions though he has woke up having hypos.

as ive said before he is not much of a talker of feelings etc, but i know he is worried about going to sleep as he has said "what if i dont wake up".   when he says this i have made sure i have set my alarm and done tests through the night for him just to re-assure him.  

thanks for all your replies, it makes you realise there are other people out there as it just seems to me that there is just me, my partner and my kids and thats it.  it feels like nothing else is important (which i know it is) but just us 4, and it literally does feel like your in a bubble.  its all i think about.

and what upsets me is that people dont understand diabetes and when someone asked me how he was and i said well his levels are OK today, they said Oh hes getting better then...........i wanted to scream and say no hes not getting better!!!  but i didnt have a clue about diabetes before any of this  so i cant be like that to anyone.   

he recently went to the hosp and they spoke about his blood test results which came back that they have to keep on eye on his thyroid as the tests didnt come back positive but they were at a level that it would probably be the case that they would.  is this common with diabetes??

thanks guys


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## nina bailey (Dec 23, 2011)

his, he doesnt have a ketone blood monitor, he has them strips.   we are from Doncaster, thorne.   

thanks


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## Northerner (Dec 23, 2011)

Hi Nina, if you have been told it is OK to adjust his carb to insulin ratios then I would go ahead and do what you think best. The advice normally given is only to change one thing at a time and then observe what happens before moving on to another thing. It does sound as though his pancreas is spluttering a bit, which can be awkward getting things to go smoothly. If he is having hypos at night, then you should speak to your team about reducing the levemir. A lot of parents advocate testing at 3 am every night, as this is the time that blood sugar levels are normally at their lowest. 

As for thyroid problems - yes, I'm afraid they are more common among people with Type 1 in particular as both conditions are autoimmune in origin. I believe thyroid problems can be treated with tablets pretty successfully though, so less of a problem than diabetes.

There's always someone here if you want to talk something over, so don't feel you are alone in this  The forum was originally set up by a lady who had had Type 1 for 35 years and never met another one, so the intention was to remove that sense of isolation 

Ask for a blood ketone monitor and strips - they are far more accurate than the pee sticks.


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## trophywench (Dec 23, 2011)

I'd be willing to bet that Mason's basal insulin (the Lantus) isn't quite right.  Either the wrong dosage (which if still in honeymoon, is difficult to pin down) OR the timing is out.

Lantus does NOT have a completely 'flat' action.  It peaks at something like 4 or 5 hours after injecting.  Unfortunately, that can be at around the same time (or maybe slightly before in a child's case, as they go to bed earlier) as our BG is naturally at its lowest - ie around 02.30-03.00 hrs.

I'd do as you say and adjust the carb ratio, and see how that goes but asap in the New Year, or just after Xmas - I'd be wanting to discuss with DSN timings/dosage of Lantus - and I'd also want to chat about a possible change to Levemir x 2 daily.  Probably bedtime and first thing in a morning.

IMHO, Lantus is a PITA to adjust because it sort of takes about 3 days to settle at the new dose before you can see what's happening.  Levemir seems more immediate - usually whatever results you see in the first 12-24 hours are repeated.  Just always seemed much more 'biddable' to me after being on Lantus and I'm not the only person who has found that.  Esp on relatively small doses, which is what you get with little people anyway!


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## Monica (Dec 24, 2011)

Just wanted to welcome you too.

Don't feel guilty that you didn't notice his weightloss. I didn't notice it on Carol either, she was 10 just like Mason when diagnosed. It was really Carol's comments that made me sit up and listen......
She told me she was drinking lots
2 days later she told me her favourite school trousers were too loose round the waist
2 days later I saw her in tight clothes and thought OMG
She insisted she wasn't poorly, but we took ther to GP anyway, the rest is history

I don't know how much Carol weighed in stones, but she weighed 28kg. Her sister weighed 25kg, which was perfect for a 7 year old.


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## NatashaA (Dec 24, 2011)

nina bailey said:


> hi, thanks for replying.   I have got loads of questions!!   my first question is that he is 14.2 at the minute.   he has had his night time injection so what do we do to bring it down???   its all really new and im just not sure what to do.
> 
> his symptoms were he had wet the bed twice but as he was going on a school trip i just thought he was worried about being away from home.   he then started with the drinking which i think i only noticed because he started drinking out of the bathroom tap.  he plays for a local football team and he just said one night that he didnt want to go as he was tired (which is not like him as hes never missed footie practice).  i didnt really notice the weight loss as he is skinny and just thought he was fit.  i just took him to the doctors and then the rest is history - straight to hospital to be told he weighed 3 and a half stone (he is 10).  i think thats what upset me the most as i should have noticed that he had lost weight.  i just feel really guilty.   his blood levels when he went into hospital were 28 and was told if we had left him another 2 days, it would be a totally different story.  that scared the hell out of me and just so glad i took him to the docs when i did.
> 
> im so proud how hes dealing with it though but we are having a lot of anger and cheek, which i know a 10 year old does, but it seems different somehow.  he's not much of  a talker  and i never know what he feels.   maybe things will calm down in time but its such a life change.



hi Nina.  My daughter was diagnosed with Type 1 on the 20th October, she's 6 years old.  I'm not going to say that life gets easier as I heard that sooooo many times, it got to the point that I wanted to punch the next person that said that to me!!!  (although in hindsight, they were right!)  I have started looking at my daughter differently now.  On the whole she is a very kind, gentle child but is beginning to turn into this back answering, mouthy brat.  It wasn't until we started looking at her behaviour and her levels that things became clearer.  Anything under 4 or over 11 then this mini monster appears and now if we think that she is going over the top, we just ask if she needs to check her blood.

Keep coming back to the site as I found it invaluable that there are other parents who have been exactly where you are now and their experience and knowledge are at your fingertips.


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## Adrienne (Dec 26, 2011)

NatashaA said:


> hi Nina.  My daughter was diagnosed with Type 1 on the 20th October, she's 6 years old.  I'm not going to say that life gets easier as I heard that sooooo many times, it got to the point that I wanted to punch the next person that said that to me!!!  (although in hindsight, they were right!)  I have started looking at my daughter differently now.  On the whole she is a very kind, gentle child but is beginning to turn into this back answering, mouthy brat.  It wasn't until we started looking at her behaviour and her levels that things became clearer.  Anything under 4 or over 11 then this mini monster appears and now if we think that she is going over the top, we just ask if she needs to check her blood.
> 
> Keep coming back to the site as I found it invaluable that there are other parents who have been exactly where you are now and their experience and knowledge are at your fingertips.




Absolutely right Natasha.    If the levels are too high or too low or indeed swinging then moods can definitely be affected.   Always tell them to check their bloods just in case.  If they are normal then make sure it wasn't a big swing and were high an hour ago and if all ok then go ahead and tell them off  as it will be normal child behaviour.   If its due to diabetes then its a bit different.


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## nina bailey (Dec 27, 2011)

thanks guys, will do that but sometimes its hard to get him to check his blood at times when he is in that mood xxxx


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## Adrienne (Dec 27, 2011)

Bribery works wonders.   I know lots of people say don't use bribery but people that say that don't always have a child with a chronic medical condition and believe me sometimes it works and is needed.

Also competition.   A boy I know wouldn't test and we know something was wrong, but he could have been high or low so needed to test.   We made it into a competition.   My daughter was there and another boy as well so we all decided that the boy in question would have a higher number than the others, so they all tested and the boy thought it was great and we were right, he was 2.2.   He was surprised but treated himself.   So that worked well as well and the other two children were fine with joining in as they knew they were ok but that he wasn't.


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## NatashaA (Dec 27, 2011)

nina bailey said:


> thanks guys, will do that but sometimes its hard to get him to check his blood at times when he is in that mood xxxx



I sometimes go for the 'well its your choice, let me know if your not going to do your blood so I can call the ambulance'.  It may seem a little extreme but has been known to work when things get really bad!


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## Adrienne (Dec 27, 2011)

Hahaha Natasha, I've said the same thing many times myself.  You just get to that point don't you


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## nina bailey (Dec 29, 2011)

thanks everybody, every time he has refused to check his blood and eventually he has, he has always been low or 16 or above.  when he is high, does it have the same affect as having a hypo???


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## Northerner (Dec 29, 2011)

nina bailey said:


> thanks everybody, every time he has refused to check his blood and eventually he has, he has always been low or 16 or above.  when he is high, does it have the same affect as having a hypo???



What do you mean exactly? Having a low can lead to unconsciousness if it drops too low, but highs have a longer term effect. When I feel high I generally feel lethargic and nauseous, but lows are usually accompanied by spots before my eyes plus some shaking and cold sweats. On occasions though I can feel low when I am not simply because I have not eaten for a while. Different people can feel quite different symptoms so it's not easy to categorise unfortunately.


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## nina bailey (Dec 29, 2011)

hi, just wondered whether he felt like crap when he is high as, at the moment he cant feel that he is high.   he generally can feel when he is low but like you say, it is different for everyone xxx


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## Northerner (Dec 29, 2011)

nina bailey said:


> hi, just wondered whether he felt like crap when he is high as, at the moment he cant feel that he is high.   he generally can feel when he is low but like you say, it is different for everyone xxx



I would say I feel a high in my stomach (sickness) but a low in my head (light-headed, confused)


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## trophywench (Dec 29, 2011)

I agree with Alan on symptoms - BUT if you are generally used to running high, you don't feel the highs so much at all.  And you'll feel low when you aren't particularly low in terms of really being hypo - so you may feel quite hypo when you are 4.8 or something.  Once you get into real hypo territory, you'll feel utterly awful.

It will only reset itself to proper feelings at proper BGs once you can generally run at a lower level.


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## Adrienne (Dec 29, 2011)

Hi

Everyone feels differently.  Lots of children, however old, can get confused as the feelings of being high and low are the same or similar.   This may come with time.

However there are many that have mood swings when high as well as when low, if that is what you are asking.  

It sounds like he is swinging quite a bit I reckon which will make him feel horrid and have mood swings as well no doubt.


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## Ruth Goode (Jan 13, 2012)

Just want say welcome to the forum, hope things are going well for you all


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## nina bailey (Jan 13, 2012)

thanks ruth, we seem to be doing OK at the minute xxx


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