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Help a mum!

Jaxx13

Jaxx13

Member
Messages
15
Location
Birkenhead
Type of diabetes
Parent
Treatment type
Insulin
Hi everyone! My little boy is 1years old been diagnosed with type 1 for 8weeks now.
We have had a pretty **** start to this,
When finally listened to by doctors was sent to the hospital where his levels was 41.8:(
We're r now trying to carb count and try and get on with our life but things keep happening. Typical little baby picks up bugs which spike his levels.
Saying this last week he had tonsillitis and sickness bug, which since then his levels have not seemed to settle. Which means he is not settling.
He's getting agitated, restless day and night. It's 5.30am he's up not with 19.8 bloods.
Can anyone tell me who has type 1 when your high how does it feel??
What's happening to my little boy when he's this high??
And simply any advice will help us right now.
Thank you everyone xxx
 
You poor thing Jaxx.

He'll be feeling tired, washed out, just generally awful and uncomfortable if what it's like for an adult is anything to go by. Not in pain though.

And you have time. These levels aren't good, but nothing is going to happen overnight. You need the help of your diabetes team though.

Good luck with being persistent and getting them to focus on him.
 
Thank you @LucySW
It's all just a bit much at the minute I feel like my head is about to explode with ratios, blood levels.. Highs, lows!
He keeps holding his head could he be getting head aches?
I spoke with his nurse yesterday and they have upped his lantus for now. Thanks for the reply

Jaxx's mum xxx
 
Hi, and hugs. I'm not T1 so can only give limited info. I would keep on at the health professionals because levels above 15 are not good. Have they told you about testing for ketones in the blood? I'm assuming babies are at risk for that like older kids and adults are.

Unfortunately, (as you will know) when someone has high BG they are more prone to infections, which increase the BG. It's a vicious cycle, that's why it's so important to get the BGs down.

Maybe a T1 can advise, but I thought it was possible/usual to get the BG down to a somewhat safe level after diagnosis before discharging the person from hospital? 19.8 seems way too high to just be coping with at home with Lantus. (To the T1s:) Could having a different insulin added, or switching completely help?

Don't be afraid to take him to A&E if he is really struggling, as they may be able to monitor him and give him meds that help, and it will show the diabetes team how hard things are for him. Even being on an IV drip can help a person feel better.

I would also keep an eye out for symptoms of meningitis... I don't know if that's a big issue in the UK but it is in NZ. The doctors here would always rather children of this age are brought in if they have possible signs of it, as better safe than sorry.

I hope things improve soon as it will be very tiring for both bubs and for you.
 
Please remember it's is temporary, bugs will come and go that's part of being a child, keep giving him lots of water to keep him hydrated and flush the nasties out, his headache could of been due to this. I take it your team has educated you in correction doses and checking for ketones ? If not call them straight away. What could be useful is getting a few apps on your phone, I've just started using Diaconnect which records results and doses taken, you can email this to your team to show them if you have concerns.

The best advice I can honestly give you is to read and learn as much as possible about type 1, it is over whelming to start with but with knowledge it becomes second nature and life will get a lot easier. Post any concerns on this forum and talk to others, you are definitely not alone and you sound like a lovely caring mum so well done for finding this forum and good luck x
 
Hi thank you @Juicyj and @CatLadyNZ
Yes I have just learnt about corrections and carb counting with his meals. He had novo rabid with meals, lantus before bed.
I took him back the doctors yesterday and they done some tests to see if maybe there is still infection somewhere.
I checked his keytones in the night and there ok,
So hard to understand what he's feeling because he can't tell me :(

Xxxx
 
I really feel for you, as a mum you just want to wrap them up and protect them. I have a daughter so have experienced lots of bugs etc with her and the thing I always remember is they do get better very quickly, so hopefully he should be fine soon. i"m glad you can test for ketones too that's very useful. In time it does get easier I promise, it sounds like your team is supporting you well. As a mum trust your intuition, although he can't say anything go with your gut feeling about how he is, this is most important tool as a mum and will tell you if he needs to see a doctor or not. Your doing a great job lovely x
 
Thank you @Juicyj
Yes it's so hard sometimes. Don't think I have slept normal since this all happened. Can't wait till I have good control over his levels and he's feeling back to him self.

Xxx
 
Just keep an eye on his ketones. Have you got a ketones meter? And if/when he throws up, if ketones are high (? over 2?) just go to A&E and make sure it's not DKA.

Courage! They are very tough really, and you are on his case. Get backup from friends/family - worry like this is incredibly draining.
 
Jeez my sympathies go out to you. That is a very young age to be diagnosed. I know there are a couple of others on the forum that were diagnosed that young but it is unusual.

As the others have said it's the ketones you need to worry about so it is imperative that they are not allowed to get high as they are the dangerous things. Unfortunately with levels in the high teens he could be feeling thirsty, tired, stiff, lethargic and generally grumpy and run down amongst other things. He may also be off his food. If his levels are that high I would say not to be afraid to give him a one off injection of Novorapid just to try and bring them down a bit. He will obviously only require a small amount as he's only little but getting the levels down will help settle him down a bit as well.

Please keep coming back on here if you have questions because it is a great place for support and advice and often you can get a quicker and (dare I say it) better answer here than you can from the professionals. Lots of happy thoughts going to you and your son.
 
have you thought about a pump and CGM @Jaxx13 I know its hard to get your head around but maybe join some of the facebook groups as well as they are really fighting for the support children need #wearenotwaiting is trending quite a lot x

And yes highly likely he has a splitting headache and very dry mouth - I can only liken it to the worst hangover you can have :(
 
@LucySW @Aucklandcanary @Engoneer88

Thank you so much for your advice. I do have a meter an checked his keytones they was 0.1.

He has been off his food and really cranky in the night was restless. :( but as the day has gone on hos levels have settled and he picked up slightly :)

Hopefully we can have a few good days!
It's so hard I have a million things in my head every day things to do, how much novo, how many carbs!
I am a single mum but my mum and dad are great help and my friends are amazing.

Just nice to how he could be feeling not guessing all the time

Xxx
 
He may well be exceptionally tired and cranky will levels above 12.0. He may well be thirsty.

I feel for you enormously... It's so tough for a mum (or dad) and grandparents etc to cope with.

With levels above 12.0 it is sometimes best to try and keep children less active... (More so in older children and adults) Exercise with levels above 12.0 can cause levels to go higher.. But generally speaking with a level as hugh as 19.0 then we would be feeling too exhausted and cranky to do much!! Thirst and extra weeing would be on the list.
 
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