10yr DD diagnosed Type 1

[Winlan81]

Hi all,

So DD has been drinking excessively and urinating more than usual over the past week. My wife clocked this and said may be she should do a test. She was perfectly fine within herself. This was last night, Ketones were normal…glucose was off the chart. Had a finger prick test thing at hand as wife is Type 2…her b/s was 30.1. Went to A&E….fast forward and basically they have said type 1.

We were shocked! Now as my wife is type 2 we are not alien to the condition but type 1 just terrifies me.

we have friends who are type 1 and they have been for decades and say it can be managed ok as long as it is managed its not complicated but there will be ups and downs.

They have got her down to 6.1 and she is fine in herself although tired from lack of sleep. Her ketones are still ok. She will be in for a few days to monitor and continue to manage and also to educate us and set us all up for coming home.

My want to come here is more with just trying to get some advice. Im worried about when she gets ill with a virus or even worse vomiting bug! What to do how to handle it. Im worried about when shes at school and how they handle it. After this “honeymoon” period where her pancreas is winding down its insulin production to zero what happens and will it hit hard? Ive been looking for support groups in South East London but cant find many to do with children.

Essentially I'm just looking for just some reassurance that everything will be ok and any tips from experience that any of you here may have loved someone to tell you when you or your child was first diagnosed.

Sorry to hear about your DD's diagnosis. My daughter was diagnosed T1 just after her 6th birthday. It's tough at the start, lots to learn & take in. It's been 4 years now for us. Definately ask for a CGM (continuous glucose monitor) if you haven't been offered one. We use Dexcom G6. It constantly tracks her blood glucose without needing to fingerprick. Were also now on an insulin pump which has been life changing. Being sick & having T1 is hard. The nurses will go through the sick day rules whilst in hospital & the importance of checking ketones. My daughter has a watch linked to her CGM so she gets alerts when she is heading towards hypo so she knows to eat. It takes time to figure everything out but she'll be fine in time. There are good days & bad days & you learn as you go along. It's so hard to start with, we had lots of tears but life just takes on a new normal.

Thanks ever so much for the reply!

The watch linking to the CGM is a great idea. She was very tearful last night saying she doesnt want to have diabetes which was heartbreaking but she was also very tired and its a lot to take in at that age or any age.

Are there any good support groups online? We would love to connect with families in the same situation and I think it would be great for DD, I have been looking locally but there doesn't seem to be any groups for families in the area. The groups i found were targeted at adults.

This is a useful website. If you scroll to the bottom of the page I linked they have free help packs that are age related. They may be able to point you to local support services. There’s lots of info on their website to address most issues.
https://breakthrought1d.org.uk/knowledge-support/guide-for-parents/

Your paediatric diabetes specialist nurse (you will get to know them well) will be a good resource, and can hopefully let you know about local groups. They will go through things like sick day rules, dose adjustments and everything else. You will get lots of leaflets to help. They will also give you helpline numbers, so you can get hold of them for advice.

Best wishes.

We're in the south west. The diabetes nurses arrange a get together once a year, they might do the same in your area? Is there another child at DD's school? We haven't found anything in terms of online, the nurses put us in contact with a couple of other children locally which has been a help to my DD (& for me having another parent to be able to talk to who understands). It's alot to take in at first. I cried for a week! I promise you it does get easier as time goes on.

I was also diagnosed aged 10. I remember my parent being much more stressed and upset about it than me - I took it in my stride! I'm now 35 and from what I've seen, it's much better to be diagnosed young as we grow up with it being part of life. People diagnosed later seem to struggle a lot more.

When she's ill there are Sick Day Rules to follow and you will soon learn what works for her.

Is the plan to get her an insulin pump? Or for you all to go on a DAFNE course? They were the game changers for me.

Yea to both DAFNE course and pump!

regarding the DAFNE course, its aimed at patients but I assume its also for parents of children, right?

The pump has not been discussed, at the moment we in a hospital trust/area thats not going to be looking after DD going forward, the local team are going to contact us next week for a home visit but the current hospital is still done the training education and sorttd the prescription.

Regarding the pump at what point do they normally offer this or put you on a waiting list? The nurse who we spoke today was a bit vague but did say because of DD age she will be eligible with the NHS, the monitor generally gets done quicker.

Thanks all for the replies!!!

my neighbors daughter diagnosed age 10, post viral infection.
they’ve gone high tech; skin monitor, pump, cell phone apps.
she eats well is very much into sports and adjusts it all on her own (now that her parents have observed her).
She’s exempt from school policy on cell phone ban.
Parents can remote in and check as well.

I was diagnosed in 1999 so didn't do DAFNE or get a pump until I was an adult. Things have advanced a lot since then. DAFNE would have been far too overwhelming for me as a 10yo so I assume they invite parents when children do it, or maybe they simplify it?

Once my pump funding was approved it was pretty quick, around 6-8 weeks until I was all hooked up.

My child was diagnosed recently. The Facebook group ‘parents of children with type 1 diabetes in the UK’ is a great group while figuring things out.

It is all very scary at the beginning, but after a couple of months things tend to fall into more of a pattern and you get used to it more, you can carb count and understand how things work a bit easier. Levels will be up and down seemingly at random sometimes! There will be times you make a mistake and give too much or too little or the wrong kind of insulin, but don’t beat yourself up about it! Everything can be corrected.

Definitely get a CGM monitor (thing on your arm that monitors blood glucose levels all the time) as soon as you are offered. My child has decided they aren’t ready for a pump yet so we don’t push it.

Best thing to do is try to get back to your normal routine as soon as possible, back to school etc.

Im really glad @ILikeCheeseandBiscuits has mentioned the Facebook group. It’s brilliant support.

my ds2 was diagnosed aged 7. He’s now almost 25. He was initially on mixed insulin and a very inflexible regime. I lobbied to get him a pump, then introduced CGM as soon as it was available. His tech now is amazing, a pump with integrated sensor, which communicates to his phone, as the previous poster has said. It helps to look after him overnight and makes things so much more manageable.

It’s an awful shock for you all. You’ll be on a steep
learning curve but soon you’ll see that you’re getting your little girl back. You might find that she is super hungry to start with, many children are. She also may have the odd few tummy aches as her body settles down. Once your own personalised team click in, you’ll be supported to understand how best to manage this.

Oh god I’d forgotten about the hunger @Bimblesalong! I’ve never known my kid to be so hungry as those first few weeks after diagnosis lol.

its a good idea to figure out a few low carb foods your daughter likes to have between doses of insulin like eggs, meat, carrrot and cucumber sticks, cheese, sugar free jelly. She will be able to eat as much as she wants of them and you don’t need to dose for them.

Is your child a member of any clubs?

My child's sports club has a couple of young people with type 1. The coaches are used to it and well informed (and reassuringly include some who happen to also be health professionals).

I was diagnosed at 10! Things have moved on since then, thankfully, and getting an insulin pump and CGM has been life changing for me! I have survived high school, uni, child birth and hold down a stressful job 😃 I can honestly say it’s not held me back at all!

Thanks so much for the replies!!! It really is appreciated!

Her hunger has certainly come back, she was never a fussy eater but certainly there were times when she wouldn't always eat her food, breakfast in particular, but now she is eating everything put in front of her. We have been going down to the M&S in the hospital to collect a selection of zero or low carb snacks, she loves cucumbers and she has always loved boiled eggs but she also liked cheddar cheese snacks we got.

she not part of any clubs, she used to do Judo but gave it up when her older brother gave it up, but she does want to do gymnastics not sure if thats feasible? I would love to join groups in our local area (Bexley, South East London) there doesnt seem to be any around though.

it certainly is a steep learning curve and we still have the safety net of the hospital but we were allowed to go out yesterday, so we went to the local cinema and had lunch and did everything in the wild so to speak without issue and today we have come home for half a day and back this evening. I think there certainly is a little apprehension on my wife and I part once we get released but we have learnt so much in the last 3.5 days of rapid intense education that I think its just a case of taking each day as it comes and learning from each days events.

Its just been so fast and so quick.

Thank you all for your replies! 🙂

My DD was diagnosed at 10 too.

It’s amazing how quickly everything becomes second nature and honestly with a pump and CGM now sometimes I do actually have a few hours go by where I ‘forget’ as in just don’t think about it at all. And you will all get there too.

The tech we have now is incredible and it will only improve.

I'm a welfare officer in a secondary school where we have about eight students with Type 1 ranging from 11-16yo.

This is a shock now, and life-changing for you all, but you will be referred to the school nurse service who have specialists in childhood Type 1 diabetes, and in my experience they are absolutely brilliant and providing the support, information and care you will all need.

The technology for insulin management is excellent - if you search Dexcom and Omnipod on YouTube there are lots of videos about the most often used pumps and monitoring apps.

Finally, kids adapt quickly. Even our youngest diabetic students and the one or two have been diagnosed since being with us at secondary have adapted really quickly and are great at managing their condition.

Thank you so much!

We have been told that the local team will be in contact either the day after discharge or certainly by the second day. Im hoping by having that support that will massively help!

I know the tech does help in a huge way as mentioned in another post, doesn't take management of it away completely but so many have said how it really is a huge assistance so hopefully that will also help. Not sure on time scales in our area for that stuff.

Thank you!!

Wow, a huge well done to you for getting your DD tested and sorted before the ketones raised. Most kids are in some level of DKA at diagnosis and very poorly.

My DD was diagnosed 6 months ago at age 4. I felt like I was drowning at first with everything I had to learn and all the responsibility. 6 months down the line she is doing great on her CGM and insulin pump. We definitely still have down moments but it's mad how fast it just becomes normal.

It wasn't long at all since I was in your shoes so happy to answer any questions or offer support!

Hi my son was diagnosed two years ago at 16, he was in DKA
He's doing brilliantly he has a Dexcom and manages it himself hopefully hexwill get a pump at some point