Handhold- toddler newly diagnosed type 1 diabetes

[Mudonstairs]

I have been in hospital since Thursday night with my 2 year old. We noticed him being super thirsty and filling his nappies with wee within an hour, no other symptoms and he wasn’t in DKA but glucose level was over 30. We rushed to A&E and had all the test done on Thursday night which was extremely traumatic and exhausting. I have type 1 myself since I was 8, so I know what it entails in terms of insulin and checking glucose. I feel like I’m having to already say no to him if he wants an extra slice of toast for breakfast etc and we aren’t even out of hospital yet. It’s breaking my heart that I’m putting my 2 year old on a diet. We are due to have our last educational day tomorrow and hopefully we can go home.

I am just really struggling emotionally to accept it. Tonight will be our 4th night in hospital and I think being in here is taking its toll on me. They have a one parent overnight policy so my husband has been having to leave us. We don’t have our own room either so it’s really stressful having to try and limit the disruption of his outbursts. It just makes night times very stressful as toddler is crying every night wanting to go home and won’t go to sleep until after midnight. He’s probably terrified. Finding it really hard to stay positive and strong for him 😔

I'm so sorry he's going through this. The modern treatment is so so much better than it used to be. When I was a child I was told to eat huge quantities of carbs and only test my blood 6 times a week!!! Nowadays partial closed loop systems are really good. You will figure out how he can eat 'normally' but it will take time and lots of experimentation. Advocate for him and don't let the hospital staff dictate his life, he should be able to eat when he's hungry and not eat if he doesn't want to. Given you already know type 1 I think he will be fine when you get home. Hospitals are stressful and you both need to get home, feel cosy and relax. It sucks this has happened but he's got someone who's already been there to help him through it. 💐

Thank you. I know the treatment is a lot better than when I was growing up. I think being in this hospital for 4 nights has ground me down, along with very little sleep. Tonight is probably going to be a difficult night as I’ve just got toddler to sleep and the young patient in the bed opposite us seems to have a severely debilitating condition, causing him to yelp and cry all night. The poor soul can’t even talk and is just yelling and sobbing while the nurses try to calm him. It’s heartbreaking to hear 😢

Once I am out of this place and able to focus on my boy I think I will be a lot stronger mentally.

Look after yourself. It’s so easy to only focus on your son but he needs a healthy, well mum!

have you got food, comfy clothes and blankets?
I find if you can’t get him asleep on the ward pushing around the hospital in a buggy helped.

sending all my love, it’s hard but you’ll be ace-ing it already!

Thanks. I have got snacks beside me but I feel like I can’t eat in front of him as he’s always hungry the poor thing, so I feel it would be cruel. I try to eat my meals at the same time as him and no snacking in between, which is so difficult. I have comfy clothes. I don’t feel able to wear pyjamas because the nurses are coming to check his glucose every 2 hours overnight as he is almost always high and they sort of expect me to do it, i.e I have to go wet a tissue to clean his fingers for the finger prick then do the test, so I don’t want to be prancing around the hospital not fully dressed!

Buggy would usually be a good way to make him nap but our proper buggy was damaged by baggage handlers 4 weeks ago when we returned from our holiday and we are still waiting to hear from the company about the replacement. We have a £20 buggy with us but it doesn’t recline so if he sleeps his head would flop forwards so very uncomfortable. He is asleep now thankfully in the bed next to me.

I just have to last one more night of this constant glucose checks every couple hours! Next check is due at 2:30am. Knowing my luck, I will fall asleep just before they come for the check! 😂

Demand a dexcom! It is unacceptable that you and your son aren't able to sleep because his blood glucose is being taken via finger pricks every couple of hours. Which hospital is this? In your shoes I would be demanding a meeting with the doctors over why your son is being under medicated and doesn't have a cgm! It's completely ridiculous.

It’s a hospital in Scotland. They told us he would be getting a Libre before he leaves the hospital. He has one now and we are on our way home finally. Not sure why they didn’t just give us a Libre on Friday and made us wait but I know the diabetes medical staff only work Monday to Friday so I think they wanted to give us ak the information and talk before they gave us the Libre. Would have been less stressful if we got it earlier tbh! I could have demanded to speak to a doctor but because it was over the weekend it wouldn’t have been a diabetes specialist, and the ward doctors would just administer correction doses.

i have spoken with the nurses and diabetes consultant today and they don’t want me to correct him tonight to see how it goes on these initial doses once we are home. I’m not sure how much they are going to be able to judge from tonight. We aren’t even home yet and toddler has fallen asleep from exhaustion, he screamed and fought so hard when getting his cannula out and his Libre put in! He’s yet to eat dinner and he’s asleep in the car, so his routine and meals are all messed up tonight. The diabetes nurse is going to call me in the morning.

The doctor said they can look into getting him put on a pump if we wish. I think that’s what we want to do eventually but for now we have to manage with the injections. His glucose is 18.6 but with a downward arrow on the Libre so I already feel better now we have that telling us the direction his sugar levels are going.

Home soon and we can try to get back to some normality. I feel like I’m coming down with something, body aches and sore throat and I’m shivery. Hoping I don’t give any germs to the little one just when he doesn’t need it!

I'm so sorry you've been put through all of that. You both need to get some rest at last and a lemsip!
What short acting insulin have they prescribed him?
On the topic of pumps/closed loop systems: camaps fx partial closed loop system is worth asking about, it's a Dana soil pump and dexcom g6. It is really good for children although the omnipod partial closed loop is available now so that has the advantage of no tubing to deal with.
Ime diabetes nurses aren't much use regarding diabetes management as they are terrified of hypos so they underdose without considering how rubbish it feels to have a high blood glucose. Does he have a diabetologist or just a paediatrician?

It has been such an ordeal. I’ve taken some lensip capsules and I think they are kicking in slowly, may take some ibuprofen as well if there isn’t any in the lemsip ones. I need to be sort of alert as little one is likely to be up late due to his late nap.

He has been put on novorapid as short acting and levemir long acting which is what I was on before I started on the omnipod in March this year. Thanks for the tip about the pump. Never heard of that one before. Sorry but not sure what ‘partial’ closed loop means, is that the same as closed loop? I am on omnipod and it has made my life so much easier. I am leaning towards asking for this. The diabetes team mentioned that he would be offered a Medtronic or omnipod and he should get priority on the waitlist due to his young age so could happen quite soon.

We met his paediatric diabetes consultant today and she was very reassuring and seemed experienced. Hopefully this is the start of getting him on track to a normal childhood and life without all the stress I had to go through as a child 🤞🏼

This sounds crazy, but part of me is worried about pumps and omnipods malfunctioning and delivering overdoses of insulin. It crossed my mind when I got my omnipod but obviously I’m happy to take that risk. It is a bit different taking the risk with my baby though!

Technically closed loop systems aren't available yet because a closed loop wouldn't need any input from the patient IE entering carbohydrate amounts to trigger boluses so all available closed loop systems are partial (you tell it you're about to eat 30g carbs for lunch or whatever). The good thing about them is that they alarm when blood glucose is low or high and of course they suspend insulin delivery when low. Hypos do still happen unfortunately but I haven't had a serious hypo since being on one and I don't worry about overnight hypos anymore. I used to hypo badly overnight after exercise and now it literally never happens. There are also maximum limits you can enter to prevent large boluses happening.
I don't know how fast acting novorapid is, I use fiasp now as it's faster acting than my old insulin, humalog. Imo the trick to making life as stress free as possible is to get the fastest acting insulin and the newest tech. Given you use an omnipod yourself maybe make your life easier and get your ds a matching one? You can get some fun stickers to make it a bit better for him.
I'm so sorry you are having to go through all of this. How long have you had diabetes? What was your treatment when you were diagnosed?

Ahh, thanks for explaining the closed loop thing. Since being on the omnipod I have found hypos rarely happen and when they do they are mild and not usually overnight. I too used to suffer from severe hypos every night and would go through packs and packs of sweets and hypo treatments, whereas now cupboard is full of untouched sweets haha. Good tip for making life stress free and I agree!

I think down the line we will get him on the omnipod. It has been so good for me. I’m a bit worried that he will reject it and try to rip it off but hopefully he will learn to accept it. Maybe if we show him that it’s the same as what mummy has he will see it as more normal 🤔

Oh sorry, to answer your questions… I was diagnosed as a school aged child 29 years ago. When I first started treatment I was on insulin just twice per day and my mum used to inject me with a syringe. There weren’t any pens to begin with and then the pens came about after a couple of years and the fast acting insulin/carb counting came after that. At least the treatments have progressed so much since then!

Was it Human mixtard? I was diagnosed in 1992 and prescribed human mixtard twice a day. I was forced to eat 60g carbs for breakfast, 10g carbs mid morning, 60g carbs for lunch, 10g carbs mid afternoon, 60g carbs for dinner and then 20g carbs before bed. I gained so much weight and was so hungry all the time. I didn't get separate short and long acting insulins until 2008, I was so relieved to be able to adjust my insulin to my diet as opposed to having to eat so much food all day. The treatment back then really was shocking.

I have very foggy memory of that time in my life, maybe my brain has tried to delete it as it was so awful. I think it could have been Mixtard. Was it an insulin that had a clear liquid with cloudy bits in it and you have to tip the bottle up and down so that the whole of the liquid went cloudy? I was forced to eat lots too and my poor parents must have been beside themselves with worry because I wouldn’t eat much at all and never had a good appetite. I was diagnosed 1995 so similar time to you. Treatment has come on leaps and bounds particularly in the last decade I would say.

I feel like a lot of my sadness for my little one and the anxiety I have comes from my own experience. Everyone says ‘oh but you have done it all before so you will know just how to support him’ which is true but I also know how much I suffered and how much my childhood was ruined. I do not consider my childhood a happy one because of my diabetes. I would never tell my parent that because I know they would be so sad. I hope he doesn’t go through half of the trouble we did!

As a side rant, the diabetes nurse that gave our educational talk on Monday made a comment that ruffled my feathers a bit. She said that diabetes complications wouldn’t be something we need to worry about because they only happen if someone doesn’t care about taking their insulin or checking their sugar levels. It’s about the umpteenth time I’ve heard a healthcare professional say this! I had to interrupt and say I’m really sorry but it really isn’t as simple as that. I’ve always cared about my diabetes and it’s been a struggle for most of my life that I have worked hard on, but it’s still not been perfect. I have still ended up with background retinopathy in my eyes and I feel like it’s so unfair because I never rebelled or refused my treatment or appointments. Diabetes is bloody hard to manage and it’s just not possible to have control equal to that of a non diabetic. She did say something to backtrack a little but I wasn’t listening as I was too annoyed. Perhaps I should have just kept my mouth shut 😂

You must both be shattered 💐. My dad was a type 1 diabetic and played golf well into his eighties. He had a couple of spells in hospital and I ended up helping to care for him. Have to say I had little idea of the complexities of managing the blood sugars, injections and diet….. we found his hospital stays were often lengthy as they couldn’t get his readings under control but once home they immediately regulated. I think he found the hospital environment very stressful With the lack of sleep, noise etc and that massively impacted so I hope you can both get home soon.

I went through this in January with my 21 month old.
It was extremely hard and came as a complete shock as no history of T1d in both sides of the family.
He was in DKA and very poorly, reason being we had no idea what was wrong or what signs to look out for!
It's so extremely hard... the reason I'm awake just now is because his BG dropped to 2.9 and we had to wake him up and he screamed and cried for a full hour before eventually agreeing to eat a roundtrees watermelon ice lolly!
You have my deepest sympathies!

Thanks, we are both home now. I honestly think hospitals are a place where people can develop serious mental health problems. I really does feel like a prison. You have very little privacy if you are on a ward or shared rooms, lack of sleep, and for me, having to solo parent a toddler who is newly diagnosed with lifelong condition who is distressed at being away from home and doesn’t understand why his parents are stabbing him several times a day. There were times I was alone with my toddler (behind my curtain) and he was kicking off trying to leave the ward in the middle of the night. Nurses would come and look in and see that I was doing my best but just leave me to it. I cried myself to sleep on those nights.

I’m really surprised that there isnt a charity or something set up to support hospital patients with their mental health/counselling/wellbeing. Or even a charity for diabetics that supports the emotional/mental side of things for people that are staying in hospitals. If I didn’t have so much on my plate right now, I would look into setting something up!

I've just noticed you've said you are in Scotland. We are also in Scotland and received our care in ninewells, they were absolutely fantastic. If this comment isn't allowed -in regards to naming hospitals then Mumsnet please remove it x

Oh gosh, that must have terrifying for you when your little one was in DKA. Tonight’s hypo sounds really tough. Do you have any of that glycogel stuff in a tube you could have popped the nozzle into mouth and squeezed tiny amounts for him to suck?

I honestly would not have suspected if I wasn’t diabetic. My husband thought the thirst was normal for a growing toddler and perhaps it was to make up for the fact he doesn’t drink any milk. When DH googled how much water a 2 year old should be drinking it wasn’t far off what he was drinking so could easily have been overlooked. It was just something in the way that his need for water was so urgent that gave me a smidgen of doubt and I genuinely thought I was going to do a quick test on him using my glucose monitor just to put my mind at ease before I head to bed. I wasn’t expecting the result I got on the monitor. When it said HI I was shaking and called 111 straight away. They sent our records straight to A&E so when we got there we walked straight in and were seen very quickly. They said it was so unusual that he had no other symptoms and was still so well. He had very little keytones and previous to bedtime that day was happily playing and running around. It was because we caught it so early but if I didn’t have my own glucose meter or the knowledge of diabetes I would never in a million year have thought much of it and wouldn’t have been able to test. It really is so scary isn’t it?!

I wonder if pharmacies offer free blood glucose checks for people who are concerned about their blood sugar because otherwise the only way to be sure would be buy one or struggle for a GP appointment in some areas!

Don’t ask why I’m up at this time. I’m an over thinker and anxious type of person naturally, so now my son has diabetes it has pretty much nearly finished me off 😂

Yes we have loads of them but he point blank refuses to take any and literally vomits if you try to force him with anything.

He will still take a bottle of milk before bed and we give him a babybel and or a cheese string to help hold him level (ish) until morning, but tonight he drank like half of what he normally has and ended up hypo. It's so hard at this age as they don't really know what's going on or why they have to eat/drink when they don't want to.

When he was first diagnosed I felt like I was living in a nightmare, I would wake up on the morning and literally cry and scream into a towel in the bathroom I felt so helpless. I still get moments like that yet but as they do say "this is the new normal" for us. You and your little one have my best wishes and it does get easier. I just try and look on the bright side, there are so many much more terrible things he could have been diagnosed with. He'll most likely live a normal happy LONG life, and that's all we can ask for as parents x

Oh bless him, I’ve heard the gel doesn’t taste great! I have a question for you, your boy is also similar age to mine so I’m wondering how on earth I am going to sleep at night when we move him to his own room. He still sleeps in our room with us and we’ve been happy like this but we were thinking of trying to get him sleeping in his own room in the new year. Does your boy sleep in his own room? How do you hear his sensor alarm for hypos? The reader/phone has to be near him but what happens if you aren’t near him as you’re sleeping in another room I wonder!

Just wanted to mention this to you as may help you, but when I was going through a period of high spikes of blood sugar after my meals, my consultant told me that if you eat a bit of cheese with your carbs it will stop some of the carbs being absorbed. Could the bedtime cheese be contributing to your boys overnight hypos perhaps? Sorry, if you were already aware, just thought I would mention in case you didn’t know x

I also sometimes feel like I’m living in a nightmare and I also feel so guilty for feeling so negative as I don’t want my boy to feel the negativity! I know in the grand scheme of things this will all be alright in the end. I think as parents we will all move heaven and earth to make their lives as happy and healthy as possible for sure 😊

I’m sure you’ve thought of everything but jam on the gums is often a tastier alternative!

If you put the reader close enough to him and then a noise baby monitor beside it, you will hear it all over the house!! 😂

Gosh you are where I was in July!
4 year old diagnosed out of the blue (no T1D either side of family)
I remember the horrific mentally breaking hospital stay. The pure feeling of hopelessness for what was happening.

I'm 4 months down the line now and have gone from knowing absolutely 0 about diabetes to being pretty damn educated. My DD miles more stable, on the G6 and Omnipod. Hand hold!!

We got him his own phone for his sensor and we use the libre link up app to monitor it on our phones, he sleeps in the same room as us in his cot so when his alarm goes off it sounds on all three phones! We are perhaps a tad extra...

I didn't know about the cheese thing! Thanks so much for telling me that. We have actually been giving him a small petit filous yogurt before bed recently and he's been staying level for around 6-8 hours before starting to drop xx