2yr Old Type 1

[Han&Yas]

Hi All,

Firstly I have to say I am so glad that I have found this forum, it wouldve given me invaluable support in the past 7 months as I have been going through hell with my emotions, the guilt, the frustrations, lack of sleep etc.. My little boy has been a type 1 for 7 months now, he was really ill and I am glad I listened to my instincts rather than what people were telling me, I noticed his weightloss first and mentioned it to friends, family and everyone kept telling me he's fine, its probably just the age, he's running around and more active etc.. then the constant drinking and loss of apetite started I went to the Gp, and even then I was being told its fine as long as he drinks and he's not dehydrated, and although he looked his happy self at the back of my mind I knew something was not right, then the heavy and very frequent urinating began and thats when alarm bells started ringing in my head, I took him to the GP, he said we'll take some bloods and get the results in a week's time. That afternoon when I got home, I was sick with worry and decided to check out his symptomes on the internet, my heart sank when I realised it could be diabetes, the next morning I went straight to our local hospital, and they almost refused to see me as it was a ambulatory unit and they closed early, I put my foot down, explained his symptomes, the drinking, constant thirst, excessive urinating, weight loss etc. the nurse decided to check him out she called the doctor they first tested his BM, and I still remember to this day 21.7, and the look on his face said it all. We were immediately transferred to a nearby specialist hospital via ambulance, my baby was on a drip, and i have to say at that moment I felt the lowest I had ever felt, he had mild DKA, and heavy ketonuria, and polyuria I couldnt do anything and just sat there helpless, and blamed myself so much for not insisting that my GP did tests when I initially felt something wasnt right with my baby. But after the medication started, and the diabetes specialist team came to see us I felt slightly relieved and hopefull. His team have been absolutely perfect, and their support is invaluable. Things have definately settled down now, but in the beginning we had a real rollercoaster, my toddler was getting colds as it was winter, his bsl were just dropping low all the time, combined with the vomiting and runny stools it was a nightmare. I saw myself waking up every 2hrs during the night to check him, and became a emotional wreck. Every hypo had me shaken up, but Ive learnt that through researching things, and learning about the condition it makes you feel abit more in control. He's on novorapid and lantus, and I test him up to 5/6 times a day on a normal day, and if its a particular hectic, or hot day I test him more often.

I also do carb counting, and struggled with that at the beginning but I got these amazing scales on amazon which calculate the carb content in the foods, also most food packaging has labelling which makes life easier. The trouble I face now is that my little boy is becoming fussy, he wont eat his usual 3 meals and 3 snacks, instead he will eat alot at breakfast, and not in one go but over 2 hours, then eat a small amount at lunch, refuse a snack, demand milk, etc..

I really want to get a good hba1c and dont know what to do, how do I manage this, any advice is welcomed...

I hope your all well including the little ones, and my heart goes out to all the difficulties you all face.

Best wishes and Love

Hana

 

[Jen&Khaleb]

Welcome to the forum.

I just thought Khaleb had a virus when diabetes struck and he spent several days in intensive care. I did recognise the symptoms of diabetes but just thought the drinking was being sick. It all happened so fast anyway.

If you want to get a better hba1c I would suggest downloading or buying a computer programme that you can type in all the levels so you can form a good picture of when levels are too high or not high enough. Then make small changes with insulin or food to even out the highs and lows. Any a1c below 9% would still be considered a good figure in a young child and you wouldn't want to risk having multiple or serious hypos in a quest to get what is perceived a better number.

Thanks for telling your story

Jen

 

[leggott]

Hi Hana, It sounds like you've been through a lot lately, but have come out the other side. 2 of my 3 kids are diabetic. My youngest child (who is not diabetic), is also two and I can understand how difficult it must be.
You don't say what insulin your son is on, but if he is on injections with every meal (like my children are), this reduces the needs for snack in between meals and gives you flexibilty with the amount of food they eat at each sitting. You could then in theory give a large breakfast, skip lunch and give a bottle of milk early afternoon with injection. You don't say when you inject, but perhaps it's better to inject after the meal so you know how much he has eaten, or if he won't finish all his food, substuite with a small amount of juice at the end of a meal. You could also try going for non carb snacks between meals like 'cheese strings and small pieces of meat/fish to cut down on the amount of injections. Hope this helps.

 

[Clorinda]

Hi Hana,

Nice to "meet" you, and thanks for posting on my thread. We are doing ok, and thanks for the advice too. It's all very stressful at times, but I'm getting used to it now.

Have they offered you an insulin pump? Not sure which country you are in, but at 2 yrs old, they should be offering you one really.

It sounds like you caught the diabetes nice and early - my little one went downhill very quickly and was in intensive care for a couple of days. His blood sugar was 79 when we arrived at the hospital!

Clorinda

 

[Han&Yas]

Hi, Leggot

Thanks for replying, cant believe you have two diabetic children must be really hard for you, I admire your strength. My son is on novorapid and Lantus, the novorapid is with every meal on a ratio of 1:10 and lantus is at bedtime.

I also inject after eating, but what I have noticed is he might have milk at say 8.30am, refuse toast or cereal, then Ill inject him, and say a hour or so later he'll want toast, and some fruit, and then I end up worrying that this will go into lunch, around midday and so he ends up with having alot of insulin floating around in his system causing hypos. However since yesterday, I have started doing a food diary which I read a few other parents on here did, and actually this has helped and I have managed to ensure he doesnt get Hi or too low. Also I am looking into non carb or low carb snacks I think this will help alot, I will try your suggestions, or even keeping his carb under 10 grams without insulin as a snack.

What would you give if your children were abit low around bedtime, say around 4.6 and you would want to boost it to 8. I gave my little one 6g of carbohydrates in terms of strawberries ( hes addicted to fruit btw), I wouldve liked to give milk but he refused, and after eating the fruit he wanted milk typical kids hey, so I gave a very,very small amount which satisfied him, but then he woke with a sugar of 11.8 which to be honest I thought he may do. Any pointers I could use would be great ..

 

[leggott]

Hi, I wouldn't worry too much about having meals at set times. Most two year olds are fussy eratic eaters at the best of times without throwing diabetes into the mix. Although my 2 year old is not diabetic we found the only way of cutting out the morning bottle of milk was to give her fruit juice extremely diluted with warm water. To cut out the carbs you could use the no added sugar squash and add lots of warm water which you give in the bottle. This hopefully would satisfy his thirst but he would remain hungry and eat breakfast at the normal time. You could then give a non carb snack mid morning (no injection) and then an injection with this lunch. This would allow you to space out the injections allowing 3 - 4 hours between each one. You need to be careful about giving too many injections as you can get a stacking effect of insulin which can then lead to hypos. We find that with my daughter the novorapid has peaked at around 2 hours and almost finished working after 3, but for my son it takes a little longer.

As far as night times goes it really is personal to your child. my 2 diabetic children are both very different. One needs a bigger carb snack before bed than the other. But as a rule if their reading is lower than 6 or 7 before bed I would be giving between 5 -10g of carb.
It might help if you can get hold of a CGM and this will allow you to see what his bloods are doing overnight. This may help you get his lantus dose as accurate as you possibly can which would help keeps his bloods more stable overnight.

Hope this helps. Leggott

 

[annettekp]

Hi Hana

My son is now 2 and he was diagnosed in February this year aged 20 months. Its so hard when they decide not to eat or to eat when you don't want them too! Leggott's advice is spot on, each child is different.

At the moment Erland gets 30g carbs at every meal, 10g-15g at morning and afternoon snack and 15-20g at bedtime - that's what he should get but it does completely depend on his mood. He is on Levemir which we split and give him morning and evening, and Novorapid at his 3 main meals. The carb counting is quite hard but we had really good training from the hospital dietician and that's been followed up by a local dietician.

We've been offered a pump for Erland and are just waiting for dates.

Hope you're having an easy day

Annette

 

[Han&Yas]

Hi Hana

My son is now 2 and he was diagnosed in February this year aged 20 months. Its so hard when they decide not to eat or to eat when you don't want them too! Leggott's advice is spot on, each child is different.

At the moment Erland gets 30g carbs at every meal, 10g-15g at morning and afternoon snack and 15-20g at bedtime - that's what he should get but it does completely depend on his mood. He is on Levemir which we split and give him morning and evening, and Novorapid at his 3 main meals. The carb counting is quite hard but we had really good training from the hospital dietician and that's been followed up by a local dietician.

We've been offered a pump for Erland and are just waiting for dates.

Hope you're having an easy day

Annette

Hi Annette,

Sorry its taken me this long to get back to you.

Aww I hope the little one is oke, its quite hard at the beginning, hit and miss kinda thing (we're still like that now, sometimes !! )

Yes the food issue is a tough one to deal with, although hes settled abit more now we still have our off days where he decides his own mealtimes, and how much if any he will eat of it.

Fortunately his weight and height is spot on so its not affecting him much, although I just wish he would eat his 3 meals and 3 snacks like the dietician says diabetics should do, and thats it but like you say it also depends on his mood, I do wonder if its a control thing because thats what the dietician did mention, is that sometimes children feel out of control and food is really the only thing they can control as you cant force them to eat.

We also went through a stage in the early diagnosis period where they thought he had possibly associated the injections with food, and pointblank refused to eat . It only lasted for a short while though and I reckon he just became really hungry as he started to eat again.

I am so pleased about the pump, we've had the same offer here and I am so excited, abit anxious but all in all pleased.

Do let me know how you get on I reckon I could learn abit from you aswell..

I love this forum, and all the lovely parents out here who deal with diabetes on a daily basis, its so nice to know I am not alone.

Best of Luck,