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 😔

No, I would agree with being extra myself 😂

Yeah, I found the cheese thing did help with my spikes. I have read somewhere that full fat Greek yogurt can have the same effect but obviously yogurt does have carbs too, so I don’t know what that would mean whether it’s most likely going to cause a slight spike then come down low, I’m not sure. Also, petit filous probably has more carbs than plain Greek yogurt so I don’t know if the sugar cancels out any blood sugar lowering effect. May not have any effect but might be something worth keeping note of on a day when he doesn’t have the yogurt and see if he doesn’t go low maybe? It’s hard because they love a bedtime snack don’t they. At the moment my boy has to have toast and fruit before bed, he’s just so hungry all the time!

I remember the intense hunger my ds had after getting home from the hospital. He also was really tired all the time.

He was diagnosed a 3-4 months after getting Covid for the first time, did your boy have Covid before being diagnosed? My hairdressers little girl was diagnosed in march after having it January as well, I reqlly looks like there's a link 😣

He had Covid in July but he also had hand foot and mouth disease a few weeks before diagnosis, he has it again now and it’s worse this time, spots look really bad. Luckily he doesn’t seem unwell, but he he seems like the spots are itchy and sore. I’ve been putting calamine lotion on them. I googled hand foot and mouth disease and diabetes and there does seem to be a link as it’s an enterovirus. So that could have triggered maybe. I mean, it’s also probably partly genetic too as I am type 1 diabetic and so is my mum, so it was probably going to happen to him but I think perhaps a virus is what triggered it to come about when it did. Perhaps there is a link with Covid too but seeing Covid is so new they haven’t done any studies on it.

it would explain what the nurses at the hospital said to me. They said “it’s really strange because we can go for many months without any new diagnoses of diabetes and then all of a sudden we have an influx of toddlers diagnosed in quick succession”. Makes me believe the virus triggering theory x

My son was dx aged 7 and is now almost 25. I remember those early days and his massive hunger so well.

There is a link between covid and a higher rate of diagnoses. My son’s is linked to a family history of coeliac. They called it the “shock diagnosis” as there’s often no family history of t1.

please do strongly consider a pump. It’ll make things so much easier to manage as he can have tiny amounts of background suitable for his toddler size. These vary over 24 hours and hopefully you’ll have a team to help you sort it. You increase as he grows. Then you can bolus for whatever he is eating based on carbs rather than having to feed hypos caused by random amounts of insulin being released from his levemir bubble.

my son has a Medtronic 780g with sensors. From having to tag team and test bloods/ read sensors through the night with my husband’s help, when my son’s bloods weren’t stable (even as a teen) we now have a pump/ sensor combo that corrects for him. It brings down highs overnight and it suspends if he’s heading down to hypo, also alerting if need be. Plus, it also works out and auto adapts his background basals based on what he needs over a period of days to be in range outside of food input. It’s amazing and we wouldn’t be without it. It’s still not perfect and he does still have highs and hypos but it is the best treatment we’ve had for this over the 17 years he has been diabetic. With this pump/sensors there are hardly any finger pricks needed and obviously no injections as all the boluses go via the tiny canula.

please do research and push for a pump with sensors if this is the way you want to go.

We do the same thing with the Dexcom (alert on DDs phone plus mum and dad) but the 'follow' is very unreliable and disconnects a lot too.

I now sleep with DDs phone in my room but against the shared wall to hers. It doesn't seem to have issues connecting and is loud enough for me to wake up.

Hope you and the little darling is doing good. Please keep updated xx

Thanks. We are home and well. Injections are still traumatic especially when my husband isn’t home. Much easier when he can hold him down and I can do the injections quickly and gently. When husband is working my mother in law has to do the injections as I have got to hold him, and I think she is very stabby with the pen. Bless her, she is trying so hard but I think she panics.

The nurses are coming tomorrow to discuss getting him on a pump/omnipod. I can’t wait, although I know he will need to get used to that as well. My husband has learnt how to carb count really well so when he is home it takes the pressure off me. It will be so much easier with a pump. Just hope we can get it before Christmas!

Well done and keep going! Brilliant that you have support although it is difficult all round to start. Great that your husband has got the carb counting sorted and fantastic re the omnipod. I wonder if they will have an integrated sensor with that. It’ll certainly help no end in managing the diabetes and it’ll get to the point where it’s toddler first rather than diabetes running the game.

Im sure you’ve been told, but give the thigh a brisk rub where you’re going to inject and gently pinch up a wodge of toddler thigh chub to help with the discomfort.

Let us know how pump discussions go - you’re doing a brilliant job. It is such a terrible shock.

Yes, I don’t know how I would have coped without my husband being so good. The omnipod setup will be the same as mine. I’ve got a Dexcom g6 and omnipod. The omnipod comes with a handset but Dexcom needs a separate handset in order to communicate with the pod so we have to buy him a smartphone. Looking at the prices of the compatible phones on the Dexcom website and most of them cost a fortune. We think we will buy a refurbished Samsung galaxy. Obviously I didn’t have to think about this when I got omnipod as I already have an iPhone. It is a bit worrying that he will need two devices to keep him alive essentially, when he eventually goes to school etc but I guess he would need a Libre reader and his injection stuff anyway even if he didn’t use the omnipod, so it’s just life.

Oh, I’ve never been told to rub the thigh before an injection. I remember when I was diagnosed we were told to rub afterwards. I will try that. We do pinch the skin, there is no chub on my son so it’s literally just the tiniest bit of skin we can pinch 😂

Will let you know how it goes x

So update is we have had the diabetes nurse and dietitian round today. They showed us the omnipod and Medtronic pump. That was basically it. We told them we definitely want omnipod. I asked how long until we could get him on it. They couldn’t give us a timeframe. They are apparently running the next omnipod group session at the end of January but they are trying to fast track us so it will be as soon as they can. We have our clinic appointment next week also, which they said they wouldn’t be able to put him on the pod anyway until they have seen him in clinic but it doesn’t mean we will be getting the pod after that appointment, just that he would need to have had a clinic appointment by the time he gets the pod. I just feel so deflated and haven’t been able to stop thinking about things. I’m sure I’m making myself unwell going over things in my head.

Sometimes I feel like I need help but I think who is there to help me?! Struggling to cope with the idea or many more weeks or even months of the traumatic meal time injections. I know I need to be strong for him and show him that he can have a normal life. How am I supposed to go on as normal though when I don’t feel normal? How can I hold down a job and take my son on days out when I feel broken? I feel too anxious to leave the house with him. I spend most days in a daze and trying but failing to put on a brave face. I am just a mess and feel like there is no light at the end of the tunnel 😔

I think it didn’t help lift my mood when the dietitian said he will never be able to eat sweets like the haribo or pick and mix style ones, even when he’s on omnipod. I said why can’t he just carb count for it and have it? And she said he would still spike high and have a hypo afterwards because the insulin works longer than the carbs in sweets. She said he would be better just sticking to eating things like chocolate or cake/biscuits.

I hear what she’s saying and I don’t plan on giving him lots of sweets or anything. He doesn’t even know what sweets are as he’s never had them, but I do think this is going too far to say he should NEVER have them! I don’t have too much of a sweet tooth so I don’t really enjoy eating sweets so can’t say for sure if she is talking rubbish 🤷🏻‍♀️

Oh @Mudonstairs you’re going through so much. It’s such a huge thing to get your head around even with your own knowledge. I found it hard to work as my son was at school and they refused to inject him at first, which meant that me and dh needed to come out of our own work to do this for him. It’s such early days but it will be ok.

You’ve had the pump discussion. That’s one step. Fwiw mine is on the Medtronic 780g with sensors and it’s a clever system. I can see how omnipod will suit a toddler, without tubes. We found dexcom sensors to be brilliant too - back in the day I had to do some electronics and hack the signal (not the pump) on a system called Nightscout which meant I could monitor ds’ levels. Things have come along so much but that doesn’t help when you’ve not got the tech yet.

I was a member of “parents of children with t1 diabetes in the uk” on Facebook and got no end of support / practical ideas from other parents there. It’ll be a different group of people but will be somewhere you can find support from people who have walked the walk.

Thanks, I just feel a bit like I am not myself and don’t know if I am having some kind of mental health issue. Like is it normal to walk around not really fully engaging with people because all you want to do is hide away and cry but obviously you have responsibilities, work to do and mouths to feed, so no time to do that? Just have to walk around not feeling fully present and half arsedly trying to get through til bedtime each day. It just doesn’t feel real.

I am actually on that FB group but I have posted twice on there already for practical advice regarding compatible phones and omnipod stuff so feel like if I post on there again the same members are going to be like oh look it’s her again! Most other posts I’ve seen are people being positive or people asking for practical advice. I feel like my post would be just a whinge/cry and not sure it’s the right place for it. They have been very helpful for my posts asking for practical advice though so maybe I will just post and see if they can be supportive x

That chimes with my own experience so much. Obvs the usual caveat that if it doesn’t start to lift to speak to your gp.

We had a specialist nurse for more intense support when ds was dx - is there any help you can access that way. I’d also not sit on your concerns re timescale but things do seem to move at their own pace. We did have to fight for ds’s pump but things are so much better in that sense now.

It’s crap, really crap. I hope you can continue to find support at home and take some time out of work if you are able to. Honestly, looking back now those early days were such tricky times but it will improve. 💐

Thanks, at least it seems within the realms of normal with how I’m feeling. The nurse that I’m dealing with is a paediatric diabetes nurse specialist, sorry I was just saying nurse for short. What sort of extra support could I ask for though? She has suggested I take sick leave from work before when I said I am struggling to juggle everything, which I don’t think is great advice. Yes, it could buy me a week or two but how long do I need to go off sick for. Essentially when I return it will be the same as before and probably still not on the omnipod yet either.

Every time I speak to them I am asking about the timescale and each time they give me the same vague answer like a politician on repeat! They say they are working on it as fast as they can and it all needs to go through a process. I think I would find it really helpful if they told me all the steps of the process and then I knew where we were on the timeline. Like what is the actual next step. Do they need to complete an application form, are they waiting for approval from senior staff, what is the process that they keep banging on about? Why don’t they tell us what it is in real life speak?

I’m so sorry you had to fight for you sons pump. I have already told them that I really appreciate that they are fast tracking us but it’s just the unknown little hidden details and their lack of transparency that gets to me. The way professionals just casually tell you NEVER to let him eat a haribo unless he has a hypo says it all for me. They have zero clue what it is like living with Theo’s condition in the real world. They can regurgitate their medical recommendations but in real life kids are going to want to have a sweet with their friends when they are older so instead of telling us they just can’t, how about they tell us how to make it possible. Sorry, they have left me fuming and perhaps my own experience over the years with medical professionals who think they know my condition better than I do hasn’t helped!

It is really crap, but than you for your kind words. I don’t feel like I have any support for me. Husband is going through the same turmoil so feel like he is also hurting and I can’t fully lean on him at the moment. My mum is hundreds of miles away and I don’t always have time for lengthy phone calls. Husbands parents already look after our son on my working days so I don’t feel we can ask for any more support beyond what they already do. Just feels like there is no break or support for us as parents. I am glad to hear that it was tricky for you but improved. Hoping for the same x

OP, I cannot believe your team told you to never feed him a haribo. That is insane.

Our team encourages healthy eating, like they would with any child, but sweets absolutely can be eaten, they just need the insulin to go with them! They are very 'pro' about DD being the same as every other child, and the diabetes to work around her, not the other way around. I'm actually shocked to read that.

If it helps for the Omnipod, our team was transparent and said it would take about 6 months. The reason being they have to go to a separate NHS board to get the funding signed off on it, your consultant cannot just approve it. You will absolutely get one at your sons age but it still needs to go through the 'process'. They do prioritise by age and we ended up waiting less than two months from diagnosis for ours which is amazing. I know its really hard at this stage,so so hard, but it is good to learn the basics of the pens for treatment as that will still be your 'back up' in case anything was to go wrong with the pump. Hand hold.

Haribo are the one thing I can’t have alone. They send a massive spike followed by an sig quick fall.

can be okay if I do it immediately after a full/big meal.
But honestly - it makes no difference to day to day life. However if you’d told me this at the time of diagnosis it might have been the straw that broke me.

Some sick leave might give you a bit of headspace to gather your thoughts and process the last few weeks?
It’s a huge shock and the emotional turmoil is hell. You can only spin some many plates at once.

Do you have a job where you could do modified work? A gp can do a ‘not fit for work’ med3/fitnote or one that says ‘may be fit for work’ eg reduced hours, from home, altered shifts? Depends on your role.

I appreciate that it’s not a hill to die on but at this point I didn’t need to hear one more thing that makes my boy less likely to have a normal childhood! It just brought home to me how much professionals really don’t get it. People with diabetes want to live a normal life and do normal things too, and they can. It might be hard work, but having diabetes is hard work anyway 🤷🏻‍♀️

Don't worry @Mudonstairs the dietician is talking rubbish. If nothing else haribo can be an excellent first stage hypo treatment for many people. jelly babies also very popular here! My two go to a very.specialist pump clinic where the motto is basically along the lines of the whole point of having a pump is to enable you to live as 'normal' a life as possible in terms of diet, travel, sport, school/work etc.

Your attitude above is precisely the one they encourage both parents and children to take.

Hello, I know this is an old thread but I just wanted to see how your were getting on a year past diagnosis? And how your wee one is coping now?
My just turned 2 year old has been diagnosed just a few weeks ago and I feel a lot of what you’ve gone through is similar experiences and just wondered if you’ve found things getting easier or any tips as it all feels so surreal and new and just want to make things as easy as possible as previously very happy child is struggling with all the injections and things.

Aww so sorry you are now in the T1 diabetes parent club! We now have our boy on the Omnipod 5 and Dexcom G6. If you can get your child on this is will change your lives. Or even any pump at all will take some of the stress out of it. Omnipod is great though because it does a lot of work for you.

Pods need to be changed every days and tbh it is still quite a stressful experience. Sometimes he handles them quite well and just cries for a few seconds then he’s ok. Other times he will fight us and the pod gets damaged so we have to use a new one. Omnipod are really good at replacing them and sending replacements out fast so you’re not left without. That reminds me, I’ve got one from 2 days ago i need to call them and get a replacement for -sigh-! It is better than injections several times per day though as he gets insulin throughout the day without any pain and we just control it with a handset that is like a phone.

Overall diabetes is generally just a bit of a pain. So many extra things to consider when going on days out like hypo treatments etc not to mention the expense of buying hypo treatments, the phone we’ve had to buy him for his Dexcom. But one thing that has helped with that is that we have just been told he qualifies for higher rate of Child Disability Payment. This will be a massive help to us so make sure you apply for it!

On the bright side, it is a whole lot easier now one year on. He is also older and more mature and I know it will keep getting easier and easier each year. He started nursery in August and his nurse came out to train the nursery staff and it’s gone really well so far, his teachers all do a great job looking after him when he’s there and he loves nursery.

I am type 1 diabetic myself since childhood and I promise you it hasn’t ruined my life. I am a happy and healthy person. I have to work harder to be that person but it is possible. The best thing that improved my life so much was going on the Omnipod and it’s why I wanted it for my son. Ask the diabetes nurses/doctors next time to speak to them.

Big hugs. I hope each day gets a little easier. I know it’s so so hard. Feel free to message me if want to xx

Sorry I meant to Say pods are changed every 3 days!

I hope he gets better 💗

Just a random one....could this actually be mody diabetes? It runs in families. I was always considered type 1 until my younger sister got diagnosed as diabetic also....now my Mum, myself and 2 of my sisters all have diabetes. We had a genetic test via the NHS and have Mody 3.

Just a thought x

Thanks, never heard of mody. What would be the difference anyway? If it gets the same treatment I can’t imagine nhs going through the trouble to test for which type it is. When my son was diagnosed last year they said he has high levels of the antibodies in his blood indicating type 1. Would they have tested for mody as part of his initial diagnosis? I hope it’s not mody as it runs strongly in families as I’ve just googled it :(

I am thinking it actually could be. My mum has Type 1 as well as me and now my son has. I don’t have any siblings. I’ve just had a baby girl who is 6 weeks old and im worried that she may end up with it too. I’ve asked my doctors about testing her to see if she is likely to get it but they said there isn’t anything like that available. You’d think if mody was relevant they would have brought it up!

How did you get the genetic test on the nhs? Did you have to ask for it or was it recommended to you by your diabetes team?