16 Months Old with Type 1

[Chelsey]

Hi,
My 16 Month old Daughter was diagnosed with Type 1 diabetes just over a month ago.
Her father is also Type 1 but i'm havin a hard time dealing with it at the moment. Was it something I have done wrong, something I could have done different, etc.
It is difficult as she cannot tell me how she is feeling and sometimes the signs of her being low are not so clear. She also does not wake up at night when she is low and so I am constantly checking her sugars.
I was wondering if there is anyone else with a child so young with diabetes? or anyone with any advice?

 

[catherinecherub]

Hi chelsey,
I am bumping your post up so that someone sees it today.
I cannot answer your questions other than to say it is nothing that you did so please don't blame yourself. ((hugs)).

Catherine.

 

[leggott]

Hi, So sorry to hear about your daughter. My children where diagnosed a bit older than your little girl so I can't really help you on how to deal with a child so young. There are lots of other parents on here though who do and have had children with the condition as young as your daughter, so hopefully someone will be along later to give some advice.
As far as blaming yourself please don't. It is nothing you did or didn't do and just something that happend. It is very hard at the start and I totally get how you are probably feeling right now. My husband is also type 1 and my kids were diagnosed within a day of each other. At the start I thought I'd never cope, but nearly a year down the line and life is pretty much back to normal. Don't get me wrong I still have bad days, but dealing with the condition has just become a way of life. At the start it is a bit of trial and error. I kept food diarys of everything they ate and the readings ( i still do). This helped me understand how and work out how much insulin to give and I also carb counted the food which helped get their levels under control. If you don't know how to carb count, then speak to your DSN who can help you as I'm sure this will help you enormously.
It really is amazing how resiliant children are, and I'm sure she will amaze you with how well she handles her condition. Leggott

 

[suzi]

Hi Chelsey,
i'm sending lots of ((hugs)) to you and your little girl, and please don't blame yourself, its one of lifes mysteries. I'm sorry i can't offer advise to one so young, as my son has been diagnosed now for 4yrs and is 11yrs old.
But I do know a lovely lady with a 3yr old, whos little boy has been diagnosed since a baby, she's bound to pop in and offer you all the advise and encourgement you need.
Until then take care
Suzi x

 

[SophiaW]

Hi Chelsey, my daughter was 4 when she was diagnosed so I don't have experience of caring for a t1 child so young but I do know there are other parents on this forum who have very young children with type 1. I'm sure they'll be along soon to give you some advice.

I have however experienced your feelings of questioning myself trying to discover if I could have done something differently. There is nothing you could have done to avoid this happening, it just happens and no one knows exactly why. Please don't blame yourself, it offers nothing positive and you are not to blame.

My way of coping in a positive way has been to use all my energy to learn about managing my daughter's diabetes. Knowledge is one of your most powerful tools so learn everything you can. There's a lot to learn initially but if you keep reading and asking questions it all does become clearer and easier to cope with.

Your daughter is still new to diabetes, with time it will all become easier and you'll also learn to recognise her individual symptoms of being hypo. Remember it's always harder to start with, time and experience makes everything easier to cope with.

There's a wonderful network of support here, don't feel that you're alone and don't be afraid to ask questions.

 

[annettekp]

Hi

My little boy was diagnosed with type 1 in February aged 21 months. Like you we have type 1 in the family so our children are probably genetically disposed to diabetes. Knowing that doesn't make it any easier to cope with. Please don't blame yourself. My partner's granny feels very guilty that so many of her family have diabetes but there's not a blind thing anyone can do about it.

My son gets horribly grumpy when he's low (or high) and goes very pale but its not alway obvious and I'm constantly checking too. Its hard not to contribute every grump and moan to diabetes especially at night. We've had some nights where we've had to wake Erland up and treat a low reading. Not easy to get him to drink juice or have snack when he's tired. Then I set my alarm for 2 hours later and check him again. Its tiring.

I keep a food diary and a record of all his readings and the amount of insulin he's given. It helps me feel more in control even when I'm not! The diabetic nurse told me that it was like having a new baby in the house and at the time I thought she was being a bit over the top but I realise now she wasn't. It really is that hard and other people don't realise at all. I'm lucky in that my partner's cousin has a little girl who was diagnosed at 18 months and she has been a real support to us but I don't feel I can keep running to her with my woes!

You're not alone and please don't feel you have to be.

Annette

 

[Chelsey]

Thank you every one for your replys. It has made me feel like I don't need to blame myself so much but you just can't help it.
I keep a food diary and carb count but her sugars are still hard to predict. Some days are really good, some not so good.
My main worry is about her not waking up in the night, I don't know what I would do without her, and so I quite often get up twice in the night to check her as she has never woken up when she has been low.
I was also wondering Can you do too many blood tests? My doctors have once refused to give me more blood testing strips and lancets as they thought I was doing to many tests on her which made me feel awful.
Thank you all again x

 

[Jen&Khaleb]

Hi Chelsey,

My bub was 8 months old when diagnosed. He also has Down's syndrome and in January also developed Hypothyroidism (another auto-immune condition).

Even having your child's father diabetic couldn't prepare you for having a child with diabetes. Children can't tell you what's wrong, don't wake or notice when they are hypo and can't understand that the injections actually save their life. Even the smallest amounts of food can cause massive rises in blood sugar and the smallest doses of insulin can cause sudden plummets.

I sympathise with your lack of sleep as the first few months of Khaleb's diagnosis was horrific and I was generally up 2 and 3 times a night. Sometimes this was just my own panic and working out what was going on during a 24 hour period. I still get up most nights now (but only once). If Khaleb is really low - in the 2's - he may be restless and wake me but sometimes he just sleeps like nothing is wrong. When Khaleb was little I had the meter reading 'HI' quite often but I can't actually remember the last time this has happened now. We go through patches of low readings but I usually find I can read Khaleb getting low and even today tested him to find him 4.3. This is generally when he starts to go a little pale.

My only tips are:

Routine, small meals often, have a bag of everything you might need ready to go out, glucose powder (you can put it on or in just about anything) and only make very small adjustments at a time.

I found I fed Khaleb to the insulin as I did mostly give him Novorapid with meals (half a unit when little). This would have been for about 25gm carb back then so he could have a small jar baby food, half unit insulin and bottle milk about 1.5 hours later. I couldn't make correction unless his blood sugar was +20 as half a unit insulin would drop his blood sugar to hypo level if it was any less. I read in another post you have this problem also. After a while I just tried to avoid getting into that situation but my range still went from 4 to 15 mmol.

Anyway, I'm happy to offer up my experience but it really is persistence and trial and error. I had to take Khaleb off formula milk as it was so high in sugars and I rarely feed him banana but everything else is pretty normal.

We are toilet training at the moment and that is going very well.

 

[suzi]

Hi Chelsey,
I knew Jen would answer your post, shes an absolute Angel and i for one have such admiration for her and her little Superstar Khaleb. All the mothers on this forum are Angels, and you've become one too, and all our kids are superstars. You will manage your little girls diabetes, won't always be easy, you'll get frustrated, angry, tearful, but you will do it, like we all have.
Of course it won't always go to plan, diabetes has to deal with growth, illness, puberty ect, but thanks to this forum and the wonderful people on it, you won't have to go it alone. Advise, help and the all important ((hugs)) are only a click away.
Take care,
Suzi x

 

[annettekp]

Hi

In the first 6 weeks after Erland was diagnosed we had a real struggle getting his blood sugar down as it was frequently "HI" or in the 20s. We had to keep adjusting the insulin, putting it up little by little. Now we've had to lower it as the levels are more "normal".

I test Erland at least 8 times a day, more if he's been low and i'm checking to make sure levels have gone up. What does your diabetic nurse say about testing? She will be able to help you.

Annette

 

[Jen&Khaleb]

I got out my diabetes record book so I could let you know what Khaleb's blood sugars were about 2 months after diagnosis. Khaleb was in hospital for a month so this would be in the first month we were home.

24 hours with Khaleb as a 10 month old

2am - 16.4
6.30am - 9.7
9.15am - 21.1
12pm - 12.1
3pm - 7.6
5.30pm - 18.7
7.30pm - 11.0
2am - 6.6

Today's blood sugar levels

1.30am - 12.2
6am - 9.6 (Tonight he will get back the half a unit of Levemir I took away because of recent night hypos)
9.30am - 8.2
11.30am - 8.3
1.30pm - 4.3
3pm - 7 (tested just to make sure what I gave him at 1.30pm was going to last to dinner time)
5pm - 5.6
7.30pm - 5.6

Every day is different and there are always calculations being made to try and keep him level.

As for testing...I think you can do too many tests. If you test fairly soon after meals you will often get a highish figure that may make you think more insulin is needed. You can then give your child more insulin only to have them hypo a couple of hours later and having to retest repeatedly after the hypo. You can then set off a cycle of bouncing from high to low when you just needed to be a bit more patient. It is still better to be safe than sorry and you can see from my note above that I tested between nearly hypo and dinner. I sometimes don't test before lunch or dinner, I test at 10pm before I go to bed and, depending on that figure, test at about 2am. When kids are sick you need to test every 1-2 hours day and night and when you are changing doses you need to test more often. If your child is doing some big activity, learning to crawl/walk/run or doing challenging tasks you need to test more often also. Khaleb would have an average of 7 tests per day but between 5 and 10 tests could be a normal day. Khaleb's blood sugar peaked at 19 after getting bloods taken at the hospital so stress can be another factor. As for lancets, I only change them once a day but I never reuse needles. I have to pay for my own lancers at $15 per 100 as they are not covered by the scheme here in Australia. I find it amusing that I can get strips for $1 per 100 but without blood they are useless. Needles are free but drug addicts got them free before diabetics ever did!

Anyway, hope you find this of use.

 

[leggott]

Hi, I probably test anything between 6 - 12 times a day on my kids. it just depends on what they are doing and how they are feeling. With such a young child the only way of knowing is to check so I think you should be entitled to as many as you feel is necessary. As she gets older she will be able to tell you how she is feeling, so you may not need to test as much. Good luck Leggott

 

[SophiaW]

With regards to how often we test, we'll do on average between 6 to 10 tests per day sometimes more often if Jess is particularly active with sports or feeling unwell. Initially you'll probably do more testing as you adjust insulin and learn how certain foods affect your daughter's blood sugars. Once she's over the honeymoon period and her insulin requirements are correct then you will find that you may test less frequently. Initially, and with a child so young who is unable to communicate how she is feeling, the only way to know what her readings are is to test.

 

[Chelsey]

I would just like to say thankyou all again. I feel the support on here is better than what any of the dibetes team give me x

 

[Debloubed]

HI Chelsey, just reading these posts with interest, and I can only add what everyone else has said, you are pretty amazing to be dealing with this as it can't be easy! Like all the Mum's on here, you must be sooooo dedicated and I can only imagine how hard it must be to take care of someone elses diabetes (the only thing harder than taking care of your own!!). The advice I have is to check out pumpwearinc which is a US site and the Mum who runs it has x3 type 1 children and she had loads of advice being surrounded by type 1 children! It will amaze you how many Mum's like you there are out there Also, I use a pump and my pump rep told me that she had fitted an 18 month old with a pump recently so there are lots of options out there for you and your daughter

all the best,

Deborah

 

[mcpound]

Hi Chelsea,
My son was diagnosed when he was 9 months old and I can completely understand how you are feeling. It turned our world upside down and the guilt I felt for not picking it up sooner was quickly followed by thinking I had done something wrong especially when someone suggested it was because I didnt breast feed for long enough. Its hard to get your head round when you baby is so young and seems so unfair when its such a rarity at a young age but there is alot of support out there.
It is hard, that is true but it has gotten easier with time. I guess we have accepted a new normal which I think is half the battle as I did spend alot of time thinking why us and imagining life without diabetes but now i think why not us and feeling so proud about how my son has coped at such a young age. He is 20 months now. We have been using a pump since he was 10 months old and although it was a steep learning curve the flexibilty it gives us in invaluable. Like you our son has lows occasionally at night and sleep for us has been a big issue as we check and have to give extra corrections at night as well because sometime he can go really high due to growth hormones etc but we also have continous glucose moniotoring that alarms should he go low therefore givig us some peace of mind and sleep. You are entitled to have both these pieces of equipment funded by your local authourity and should anyone tell you anything otherwise there are many people to fight your corner.
We test between 6-12 times a day depending. At his age he is sometimes stable for a little while then for no apparent reason it all changes. I blame everything on growth hormones!!!I guess at their ages all the things that effect blood sugars and good control diet, activity levels, moods, hormones etc etc are all so changable so its a case of being vigilant and not beating yourself up if things dont go to plan. Although we try our best I have accepted that his blood sugars are not great but he is only 20 months old so hopefully time will stablize things.
Hope I havent wibbled on too much. Any questions please do email me and I hope things begin to settle down. I felt so isolated at first but there really is no reason for you to feel that way as there is loads of support out there and it will help. Take care.xx

 

[Jen&Khaleb]

Good to hear things are going so well mcpound! I could only wish for a pump and CGM. I tried to borrow a CGM when Khaleb started his thyroid meds but there wasn't one available. As for a pump, well, intellectual impairment rules him out of getting a pump here so we will continue on basal/bolus. We haven't really got any serious concerns so I suppose I'm happy enough that he isn't hooked up to something all the time. I think I'd love to have him on injections in the day and a pump overnight so I could just turn it up or down as required. Yes, I know this wouldn't work.

Nice that you have lot of support and can also offer some to someone else.