Our 5 year old son recently diagnosed type 1

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Kirsty R

Kirsty R

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Hi, we are very new to the forum, site and diabetes! We took our son to the GP last Tuesday after we had noticed he had been drinking much more than normal and he had started bed wetting, which was completely out of character for him. Glucose and ketones were found in his sample and we were sent straight to A&E where he underwent some tests. We were told that usually they can tell you right away if it's diabetes but because his blood sugars were fine they couldn't say for certain. We were sent home to await the test results to return 9am the next morning. Again he was monitored and nothing could be said for certain Sotheby's plan was to be sent home with a blood sugar monitor, record his levels four times a day and keep in contact with the diabetes team every few days.
The first day went fine all levels ok but the second day by bedtime his levels had arisen to 13.7. We telephone A&E as he wasn't feeling well and as I was due to email the team in the morning the said to keep an eye on him but to report everything to the team early the next day. So we did. By 9am the next morning we had received a telephone call asking us to take him into hospital as he would need to be admit. So over the weekend he was first monitored and then started on insulin. They have said that we have caught it very early on so his body is still producing some insulin so he has started on very small amounts. Because of this 'honeymoon phase' it is proving very tricky to treat him and his levels are very up and down. The highest they have been is 16.9 and the lowest 2.1. He is having hypo's everyday but he is being a little trooper. We have practically fallen to bits but he has taken everything in his stride. In hospital he did not complain at all. We have had a few issues at home but he has quickly come around when we have talked to him. We are so proud of how he is handling this and I turn it has obviously made it easier for us.

Now the long long learning curve begins. We have learnt the very basics to be able to have him home but that's it. I don't know how often children present in the way our son did but from what we could guess from the hospital it isn't many. I know we have been very lucky in that we have found out before he became ill and for that I am very grateful. Also the hospital and the whole diabetes team have been a God send. Now we are just trying to find out as much as we can to better support our little trooper but the whole emotional roller coaster never ends!
 
Hi and welcome to the best forum for support and encouragement.

I'm no help at all but one of the experts will be along soon. (((Hugs)))
 
Hi Kirsty, welcome to the forum 🙂 Very sorry to hear about your little one's diagnosis, but glad you have caught it early and that he is being treated by what sounds to be a good team (including you and him! 🙂)

One of the best bits of advice I can give you would be to get a copy of Type 1 Diabetes in Children Adolescents by Ragnar Hanas which covers all aspects of living with Type 1, and is an invaluable reference source 🙂 I'd also recommend having a read of Adrienne's essential guide for parents of newly diagnosed children, written by one of our members.

Please let us know if you have any questions and we will do our best to help.There is a lot to learn, but there is a lot of help and support available, so if anything is confusing or worrying you, please ask 🙂
 
Many thanks for your replays and support they are gratefully received. Yes we are very impressed with the hospital as a whole but especially the diabetes team. They have been very supportive and a wealth of information without being to much, although we know there's so much more to come. We have a outpatients appointment this morning so a few thing to discuss in particular his hypo as he is having one or two a day. I guess as his body is still producing some insulin it is difficult to say exactly how much he needs to be topped up by. Also it's difficult to say how long his body will continue to do so. The only thing from him having them is that it is getting us used to him having them and we are starting to recognise how he behaves. The first few he had he became upset but since then when he is low he gets hyperactive and a little cheeky and it appears the same when his levels are high to!
One thing that does concern me is that he seems at the moment to have low level when he wakes up in the mornings and I am so worried that he will go so low that I won't be able to wake him. So because I'm worrying about this I'm waking early and testing him just to make sure and so far I have always caught him before he goes too far but it is something the scares the life out of me.

Thank you for the book recommendations I will look for these and read them as at the moment there's no such thing as too much information!
Thank you again.
 
Hi Kirsty, lots of parents test their children during the night - around 2-3 am is the time when levels tend to have dropped to their lowest. It's difficult, as you say, when in the honeymoon period to anticipate insulin needs, It sounds to me like his basal insulin might need adjusting, so be sure to ask about this at his appointment. Let us know how things go, and if you have any more questions 🙂
 
Hello Kirsty, just wanted to say hi and welcome 🙂
I'm so sorry you and your family are going through this. It is a learning curve-I don't think there's an easy way around that-but with time you'll have more knowledge and confidence in managing his condition. Please remember that his diagnosis doenst mean that he can't go on to achieve things in life. He can ! - the main difference with us and non diabetics is that we need to plan ahead thats all !
x
 
Welcome to the forum Kirsty, but sorry about your son's diagnosis. My son was diagnosed aged 4 so a similar age (he will be turning 15 next week!!). Well done for being so switched on and taking him to the doctors with his symptoms of thirst and toilet trips - unfortunately many children are seriously ill by the time they're diagnosed, often due to GPs sending them home without doing a test :(

It's very early days so I don't want to bombard you with information, but do get the Ragnar Hanas book that Northerner recommended, as this is an excellent resource. Is your son on a basal insulin once a day and a rapid acting insulin with each meal? Hopefully your hospital will teach you how to count the carbohydrate content of his meals and adjust the insulin to match this.

Nights are tricky, because this is when all the activity of the day catches up with them (if they've been energetic, their muscles will be replacing their stores of glycogen from glucose in the bloodstream, which can lead to a drop in blood glucose). Also, growth hormone is secreted during the first part of the night (but only during a growth spurt - so a bit hard to predict!) - this causes a degree of insulin resistance so blood glucose can rise. The timing of tea/supper can have an effect too - different foods take different lengths of time to digest, e.g. potato is very quick, whereas lower GI foods like pasta take longer, so may still be digesting when your son goes to bed, leading to a rise in BG level. Rapid insulin doesn't get all used up until ~4hrs after injection, so sometimes if the BG is ok at bedtime, there might still be insulin on board which could lower it further. In practice, it is almost impossible to predict overnight BG levels, and for this reason many parents (me included) do set an alarm each night to check.

Finally, have your clinic team given you a glucagon emergency injection kit (orange box)? This is a "just in case" kit to be used in the event that your son has a severe hypo where he loses consciousness. Everyone should be given one to keep at home and shown how to use it by their DSN.
 
Thank you for your replies, we will be visiting the book store tomorrow to see about the recommendations. We have been told how lucky we are to of spotted the symptoms so early on, we are just thankful that we listened to ourself and also that the GP took our concerns seriously, our surgery is a very good one.

The appointment today went well, his doses wer changed as he is having a few hypo a day. His doses at present are very minimal anyway due to him still producing some insulin himsel but some were still needed. Yes Redkite he has four injections a day breakfast lunch and tea is novorapid and one a little while before bed is glargine the long acting one. They did say that if he still is having hypo they may even have to take some of the injections away for a while whilst he still produces insulin but obviously this is a work in progress thing as they said that they don't normal see newly diagnosed children of his age this well and still producing insulin. So we'll see what the new alterations do. The hospital have provided us with everything, other than the lucozade and glucose tablets! Honestly they have been brilliant we have obviously all the blood sugar testing stuff plus spares, injection pens plus spares and all the things that go with them, glucogel and the Glucagen injection, which I must say scares the life out of us. They have even been in contact with the infant school yesterday and are visiting them tomorrow before school hours to deliver the training. Again this is something which I in particular am finding really difficult to think about at the moment- him going back to school and handing over the care. Don't get me wrong the school is excellent and we have never had an issue with them but still...

The issue with night time is that before starting treatment his blood sugars would raise throughout the day but overnight they would go back to normal. Now that he has started treatment by morning say 5-30 to 6am he is going into a hypo. Hopefully with the dose of the long acting insulin being changed today that will have an affect on this.

Many thanks for all your replies and support we both are very grateful and it means a lot. Thank you.
 
Hello Kirsty, and welcome - sorry to hear about your son, but it sounds as though he's got a really good diabetes team there, and that really helps 🙂

Hopefully reducing the glargine will stop the night-time hypos, but if it doesn't, ask if you can reduce it a bit more (or just reduce it and see what happens), don't wait until his next appointment. I was diagnosed type 1 as an adult so it's slightly different, but I was put on 16 units of glargine when I came out of hospital and I had a hypo every night for the first week, after which they put it down to 6 units! So they do sometimes really over-estimate the amount needed at first. Even with all that much more insulin than I needed though, the hypos did wake me up, every time.
 
If you do reduce the glargine, be aware that it often takes two or three days to see the difference - it's not recommended to change glargine more often than this as it can become confusing. Many people find that Levemir is a more manageable basal insulin, although it often has to be given in two injections over 24 hours, rather than one 🙂
 
Welcome from a person who has been T1 from the age of 3. Now 52. You will have to get your leaning head on . Every day is different but in time it will calm. Good luck & you have joined a good site. Pls Ask
 
Northerner said:
If you do reduce the glargine, be aware that it often takes two or three days to see the difference - it's not recommended to change glargine more often than this as it can become confusing.
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Oh yes, sorry - I should have said that 😳 I was told to wait 4 days to see the effect of changing it before making any more changes.
 
Welcome Kirsty, I just wanted to say that you've clearly got a proper little trooper there! I'm sorry to hear your little one is going through all this, it's bad enough when it's you but when it's your little one it must be terrifying. It can be very overwhelming at first but it does become second nature quite quickly.

Despite being 42 I'm newly diagnosed and have issues with overnight hypos like your little trooper, my blood sugar still returns to near normal levels at night so taking the long acting injection at night is a disaster for me. It helps to take it in the morning because there's less of it active over night then so might be worth asking your team about that if the overnight/early morning hypos continue 🙂
 
Hi Kirsty.

My son was diagnosed a week ago. Although 12 so a little older I understand what you are going through.

If there is anything you need to talk about please do ask. From one new parent to this to another.
 
Hi many thanks again for your replies they are gratefully received and we value your support greatly. Thank you. Well it's been a few days since his doses were lowered a little, even though he is on very minimal doses as it is. Doing so has stopped the early morning hypo which were scaring us incase we couldn't wake him. So that's a plus, to be honest since the dose reduction he hasn't had a hypo yet. Throughout yesterday, Friday, his levels dose, we are not sure if that's because of the food he ate or we are just seeing the start of them raising again. He spent the morning at school which he enjoyed. They were having a visit from Santa and they were keen on him going back just for a few hours before they broke up for Christmas which I understand. To be honest I'd be happy saying he was never going back to school and I'd teach him at home but that would be for me and that's me being overprotective! He loves school and enjoyed being there. He stayed for lunch and his dad was allowed to stay for lunch to do that was an extra for him to. My husband said the food was a little fatty so we wondered if that was why his levels went up. Not sure on that one! Has anyone else had any trouble with food at school?
The hospital and our doctors practice continue to be on top form. Have an appointment on Tuesday with the consultant and another on the 6 th January. Plus the diabetic nurses telephone every few days to check up on his levels. The GP practice has completed all of the prescriptions we need for home and for when he is back st school , plus spare insulin pens without question in record time given the time of year. The school also have been amazing and very understanding. We appreciate it is a huge amount of extra work for them but they have been so accepting and have not tried to hide from any of the responsibility. In one week they have set up a care plan, completed the training, information all staff including dinner ladies and kitchen staff and have been very reassuring every step of the way that they would look after our little man. I know when he went in yesterday they were all worried incase he was ill. They checked his levels half way through the morning just to make sure he was ok and they used a ketone strip instead of a glucose one, I've done it a few times now myself! But bless him he told them that it was the wrong one so it shows he has been taking it all in which has amazed us. What does break our hearts is when he crus and says he doesn't want diabetes and when will it go away. It really is heart breaking. Generally though he has taken to it like a duck to water and he is taking it all in.

Sorry to hear that your son has just been diagnosed Cofito and that you for your support. The same goes to you also, take care.
 
That's all sounding very positive Kirsty, good to hear you have a very pro-active team behind you 🙂
 
Hi Kirsty, glad to hear your son's school is being so supportive. I'm sure he'll settle back into school happily - there will be issues arising from time to time but as long as you have good communication channels with the school, everything will be fine. 🙂

When my son was on Lantus (glargine) as a basal insulin, we did find that it didn't give the "flat profile" it was supposed to - he would need to go to bed on a very high BG level to avoid being hypo by morning, and then by mid afternoon the basal insulin would have completely run out and his levels would start going up and up (to the extent that we were having to inject novorapid if he was doing a sport after school). He was also on very low doses of Lantus, and at the time the dose could only be altered by a whole unit at a time. So I just wonder whether this could be the case for your son - why not see if there's a pattern of higher levels in the late afternoon or if this was a one off due to the school dinner. If due to the action of the Lantus being uneven across the 24 hours, other options your clinic might suggest are splitting the basal into two doses, switching to levemir, or (best option) a pump. 🙂
 
I can tell you all are learning. Good. Pleased the school are a caring bunch too. Good luck 🙂
 
Hi, since last writing he has only had one hypo which is good. The thought of them, particularly nighttime ones are still very much on our minds. In fact so much so it's affecting my sleep! His levels were steady for a few days on the lowered doses but then started to raise again so on the appointment with the consultant the meal time doses where changed again. His bedtime on has started the same at 1. His breakfast one is dependant on what he eats as we have found that if he eats toast then he needs 1.5 but if he has porridge then he only needs 0.5 would found this out through him having a hypo one day after having it. His other dose are 1.5 at lunch and 1 at tea. Thankfully Christmas Day his level were near perfect which was great, but again we found that the new dose amounts only stabilised him for a few days, around 3-4 days we are finding. Boxing Day his levels started to increase again. His numbers are ok when he gets up in the morning and throughout the day they build up so the last two days his levels have been, four readings a day, 4.3,8.9,11.6,12.9 and today 6.0,9.8,13.2 and the final one before we went to bed was 16.9. We have a telephone call on the 29th from the diabetic nurses to review his numbers so if tomorrow is the same perhaps it means he needs an increase again but like I said it seems to be that the dose increases last him 3-4 days then he needs an increase again. Not sure if this is what usually happens in the honeymoon period or not sure if this is a sign that he is slowing down in the amount of insulin he is making himself.

It's all still very emotional we had thought we had finished with the tears but with Christmas and with worrying about nighttime hypo that's cussing me sleepless nights it all makes for n emotional roller coaster. We were glad of the advice though about if he was 5 or below when we checked him just before we went to bed then we were to give a small snack but it does take the worry away. most nights he is sleeping in our bed just to give us peace of mind that someone is with him if something were to happen, even though logically thinking if he were to have a hypo we would all be a sleep anyway or are there signs that someone is having a hypo in their sleep? I'm babbling on now so I'll stop!

Hope everyone has had a good Christmas and here's to a Happy NewYear!
 
If he has anything wrong with him normally, eg if he wakes up feeling sick, would he normally come and tell you, or yell for one of you? Most kids do that anyway - and they will with a hypo normally.

However, if you are checking his BG when you go to bed and again in the middle of the night, as per the normal advice for little kids, obviously this lessens the chances of this happening anyway.
 
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