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14mth old daughter diagnosed a week ago. Help....

Sophia's_Daddy

Member
Messages
14
Type of diabetes
Type 1
Hey everyone. My wife and my worlds were completely turned upside down just over a week ago when our beautiful 14 month old daughter was diagnosed with Type 1 after going into hospital with breathing difficulties. I can honestly say this past 10 days have been absolutely awful and we can not see the light at the end of the tunnel. As much as we are slowly coming to terms with the fact that our little girl has type 1 and we are doing our best to manage it, it's proving to be a constant struggle, worry, stress and a nightmare that's not going away. We keep getting told it will get easier and that everything will be ok and that we are doing really well but we both feel the complete opposite. The constant stress of wondering what her blood is, checking it, checking ketones because it's over 14, worrying about highs and worrying about lows, counting the carbs, the confusion because one minute it's 6.8, the next it's 16 and the next it's 4.2. And that's without the heartbreak 4/5 times a day when we have to give her the injections that she screams at. We are doing everything we can for her but being thrown into this (like every diagnosis is) is so scary. I suppose I'm just after someone to tell me things get better. If anyone who has been in or is in the same position with such a young baby, your words will be appreciated. I know it's not gonna be 'ok' and it's a long never ending journey but any advice or knowledge that may make us feel a bit better about this will be appreciated. Thank you.
 
Things will get berter and they will getbeasier. I know that's probably impossible to believe now, but I promise they will.

Have you considered a pump for your daughter? I myself have had Type 1 more than 20 years and I have three children, none of which have Type 1, but if they did, a pump would be top of my list.
 
At the moment the DSN and docs are trying to gauge her levels and ratio etc. At the moment these are all over the place. We have discussed it and we are going to push for one ASAP and to be fair the diabetes team, I think they want her on one as well. But we've been told we have to be able to carb count (which we are doing) and I think we need a full-ish understanding of it before they give her one, but we are hoping to get one. Been told she will get a CGM as well, although we will still need to finger prick?
 

Firstly you're feelings are normal, I can remember breaking down in hospital when she got diagnosed. She was struggling to breathe also and slipping in and out of consciousness but we kept getting told it was a viral infection.
It is stressful, it's hard work it makes you question yourself and everything you do, but you and your wife CAN do this! You WILL do this and you will kick the a** out of it. For no other reason than because you love your child! It's so much to deal with and a huge amount of information will be/ has been thrown at you. Give yourself credit too.
I remember the first time I injected my daughter, I cried for about 10 minutes after.
We now have an insulin pump, we've been on it for 3 weeks now and I love it already.
Because our children are so little then need so little insulin, which the pump can do, ours can give 0.025 units.
You are stronger than you will ever realise, but you are never alone. If you need ANYTHING then please just ask.
 
Yes, it's sensible to delay a pump for a little while until ratios, etc, are sorted. I don't have a CGM but it would be invaluable for a young child. You can set alarms to alert you to lows. You still have to fingerprick to calibrate it and to check blood sugar when necessary eg for calculating an insulin dose, but it will allow you to see a 24 HR picture of her blood sugars, and will give you peace of mind (as much as possible - I know you'll still worry as any parent would).

I can imagine how difficult it is with such a young child - for so many reasons. It sounds like you're getting your head round all the things you have to do, like carb counting. Although all the work might seem completely overwhelming now, let alone the emotional impact, that work will get easier as you learn more. I recommend writing everything down - what works, what doesn't, meals plus insulin doses that work well, etc, etc.

If you haven't already got them, I recommend these books Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas, and Think Like A Pancreas by Gary Scheiner. The second of those is about adults but it really helps you understand Type 1.
 

Sounds very similar to our hospital visit. Sent home from the GP that morning with antibiotics for a chest infection. Breathing started an hour later so took her into hospital, thankfully we went with our instinct, her blood glucose was 32 and ketones were 5.5 which is pretty bad so We're told. There is soooooo much to learn. And it's all so important. And of course we do it for our baby. But that doesn't take away the fear, stress and constant worry. I'm hopeful that the more we get to grips with it the more we learn the more confident we will get. How long have you been dealing with it now?
 

Thanks. I am just in the process of buying both. Anything that can help us understand this better and help us look after our little girl better is good for us. Thank you.
 

Unfortunately the stress and fear will always be there because you're her dad. Naturally you will always be worried. You sound very strong willed and minded which is fantastic, hopefully it won't be long before you find what works for YOUR daughter. It's great that the funding is available for a CGM we currently don't have funding agreed. We're 6 1/2 months in but some days I feel like we've been doing this far longer. My little one was diagnosed a little older than your daughter she was 23 months.
It's hard to try and get such a young child to understand that you're not just hurting them but you're looking after them. She will get to a point where she doesn't cry anymore when you inject her, I know that's not much comfort but it's true.
 
I'm only really posting because your post was so heartfelt! I was diagnosed at aged 7 so considerably older but I remember my mum took me on a diabetic conference to learn more and I distinctly remember a lady that my mum became friends with whom had a baby on her lap that was type 1 also, I remember it so vividly I remember his name 'Vince' he was about 18 months and sooo happy! He won the hearts of everyone there. His mum wasn't so happy, she was so distressed but got a lot from being with others in a similar position. This was back in the 80's and treatment was limited! But I guess what I'm thinking is find out all the information you can and as others have said there are so many advances in diabetes care that can help you now. Children are amazingly resilient and I think judging by your post she has very supportive and attentive parents to help her!
 

Thank you. We are determined to not let this break us or her, as hard as it is at the moment I hope we do come out of it being able to look after Sophia and her diabetes the best we can. She's already really good with the finger pricking so we hope she will get better with the injections. And of course we are hopeful of a pump in the foreseeable future which should make things easier and less upsetting for us all.
It seems like it's just all so unpredictable at the moment but we hope that her levels will even out in the coming weeks which will help ease our anxiety. Do you have any advice on injecting when alone? My wife and I have been home together whenever we have needed to so far, we had our first lunch out today where we had to give the injection while out, which felt like a bit of a milestone and hurdle jumped, but I will be going back to work in a weeks time and we think it's going to be tough to restrain her and Inject when we are alone.
 

Thank you. We are doing our best and she will have all the support she needs growing up with this. I think you are right when you say the care has advanced loads. Which is such a good thing. We are hoping to meet another family in the same position through our diabetes team so hopefully that will help too. X
 
I think that will be an invaluable experience for you! This forum is great but sometimes it is real life people in the flesh going through the same that makes it a more bearable time for you. I sincerely hope you find the right support and I am sure you will find this forum a great help over the years to come x
 

Small steps are all you need to take for now, don't overload yourselves with too much otherwise you will get burnt out.
The first meal out is a huge step, I can remember thinking everyone was looking at us (they weren't) now it's a 'normal ' thing we do.
I used to sit Skye on my lap and sing to her or play with toys with it all on the table in front of us, food included, then when she had calmed down a little I would explain to her that I was going to give her her special medicine so that she could eat all her yummy food up.
She still screamed for the first week but after that she just stopped. The only thing I would advise is don't get worked up about it, you have to be quite matter of fact and say I have to do this. Otherwise you can spend ages trying to get them to agree but by that point you are then both really upset and distressed about it.
Legs are a good place to start injecting as they are quite easy to hold still.
 
Thanks. We are alternating between legs and bottom at the moment but it's both of us doing it, we are going to start trying it on our own in the next couple of days just to try and get used to it and find a way that works. Thanks for all your advice, it really is appreciated. X
 
Sophia's_Daddy said:
Been told she will get a CGM as well, although we will still need to finger prick?
Click to expand...

CGMs are fantastic devices so do everything you can to get your mitts on one. Instead of just getting a few "snapshots" each day from finger pricks, you get to see the whole movie playing in more or less real time, so it's much easier to see lows or highs developing and then do something about it before it gets too out of control. Still needs finger pricking occasionally to calibrate it.

Another good book on the subject of diabetes generally and cgm in particular is Sugar Surfing by Stephen Ponder. He's an endo and T1 so sees it from both sides.
https://www.amazon.co.uk/Sugar-Surfing-manage-diabetes-modern-ebook/dp/B017EIX9HG

Dexcom says their age limit is 2, freestyle libre is 4, not sure about medtronic. But those are because that's what the government has approved them for. Not for me to second guess doctors or governments (actually, scratch that, in a free country I should always second guess goverments!) and it'll be a personal choice for you and Mrs Sophia's Daddy, but I would be surprised if there wasn't a few parents out there bending it a bit on the age rules.

There was a 36 year old on a DAFNE course I went on, she'd been T1 since 2. She was doing just fine, said she was so young she didn't really remember much of it and it eventually just became part of her life which she took for granted. Kids can be remarkably matter of fact about things once they get used to something new.

Best of luck, mate, you'll get through this.
 

Cheers Scott. Just coming on here and reading people's comments is helping. I will look into the book. It's very reassuring speaking to people in similar situations and people who have a bit of background and history with T1. Thanks again.
 
Hi @sophia's Daddy, please be comforted that your daughter will be OK, with your support. I've been Type 1 for 30 years and have no complications whatsoever, thanks to tight glucose control. You can help her achieve those great numbers and normal glucose if you choose a lower carb, or very low carbohydrate diet. In addition to helping lower her blood sugars, a low carb diet tends to be very good for anyone with autoimmune disease, along with avoidance of gluten and other allergens and the addition of probiotics to restore her gut microbiome. For Type I diabetes in children and adults, the best resource is Dr. Richard Bernstein, who wrote the book "The Diabetes Solution". He recommends a very low carbohydrate diet, which will greatly help you in getting her blood sugars to normal. The other thing he suggests is sparing her insulin producing cells as much as possible at this early stage. She most likely still has some beta cells left....and they may survive long term, giving her a "honeymoon" of little required insulin. But to get this honeymoon, you'll need to normalize her glucose levels very soon to give her remaining beta cells some rest from the high blood sugars. Yes, the beta cells are under autoimmune attack, but the immune system typically backs off the attack after the initial assault, leaving some behind. Check out Dr. Richard Bernstein and the Children with Diabetes website, for very targeted support. God bless you and your family as you find your pathway to good health for her. It will happen!
 
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