Dad of a newly diagnosed 2.5 year old

[x321amr]

I have felt as though my world has ripped apart simply over night. One week later I have had sleepless nights checking my child more often than what I have been advised to. Consultants/ DSN all just do not understand what parents go through enough in my opinion. They advised me to check my child every 4 hours when her body can actually go hypo very quickly.

They want me to do the finger prick tests and insulin injections - It feels horrible my child has to do this.
The more i read about complications whilst her readings are fluctuant the more stressed I am getting. Its driving me mad.

I have asked for a dexcom and potentially a pump however the team advised me that they need to put a claim towards the NHS commissioner - This seems like it is going to take ages.

Has anyone consider going privately. Are pumps better for stabilising blood glucose more. Is there a closed loop system for insulin admin and glucose checks (automatically) if so where do you source this. Money aside where is the best place to get care? The best pump, the best of anything for this condition I would like to know.

 

[xfieldok]

As a T2 I won't offer any advice. There is a sub forum for parents and children. You might read around before someone offers advice.

 

[ArtemisBow]

I’m so sorry you are having to go through this. I’m T1 myself, my children are not (currently) but it’s often crossed my mind what that might be like. The good news is with proper management she will have a happy and normal life, so although it won’t feel like it at the moment things will get better.

In terms of care, yes there are closed loop systems but I believe currently those are set up by users themselves - I’m tagging @LooperCat as I believe she uses this. I use a pump and a libre which is like a CGM only less expensive- both are now NHS funded but that does take time.

Good luck and please stay around, there is great support here x

 

[UK T1]

Hiya, as mentioned there is a parent forum which you might find useful here: https://www.diabetes.co.uk/forum/category/parents.16/

I was diagnosed as a teenager, so a different situation, and I know many find pumps extremely useful but I've always found the idea of them more restrictive. I guess I was lucky in that I have always responded well to injections. I also have a libre sensor as mentioned above. Each CCG now has to prescribe these to at least 20% of their diabetic patients so it is easier to get on the NHS, but I know many self fund the sensors while they are waiting for it on the NHS prescription. While you're waiting for the NHS script where you get a free meter, you can use a smart phone to scan the sensor. It will tell you the glucose readings over the last 8 hours. I'm not sure if there is anywhere to order the libre 2 sensors in the UK yet but these also have Bluetooth function so it can be set up to send readings to your phone more like a CGM. I've read about libre 2 being available in Germany for a little while.

The early days are scary for everyone so do keep asking questions! It is possible to live a very happy unrestricted life with type 1, so while there will be ups and downs, there is no reason why any diabetic should not be able to live a full and happy life. There is a lot to learn at first, but in a weird way I am glad I can inject as at least I don't have to restrict what I eat! The injections and glucose tests are there to help us live our unrestricted life, so I feel fortunate I have these to help me. I know they weren't around that long ago so feel fortunate for the advances in technology to allow me to live.

While overall you want to aim for stable blood sugar levels, the early days are hard while there is so much to learn. It is normal for the levels to be fluctuating in the early days. A short period of slightly higher levels are so very very unlikely to cause any long term effects, that this might be something to discuss with the diabetes team to allow for less sleepless nights. I remember my paediatric DSN scaring my mum that my levels had to be exact all the time, but her worry was not worth it. A night where my readings are 8-10mmol but everyone has slept well is better than lower readings but sleep deprivation. Diabetes is never the same for any two people, and so it is also important not to compare to other diabetics.

We all have days that are easier than others. The early days are a steep learning curve so hopefully other parents will answer but hopefully the thread will also help you. It will settle down for you all

 

[LooperCat]

Oh, I’m so sorry your baby got this thing, it must be horrendous for your whole family. I do use a closed loop system that I built myself following the very excellent guidance at https://loopkit.github.io/loopdocs/ You do need a compatible pump and CGM system, and the LoopDocs explain absolutely everything. Getting the necessary kit may take a little while, but while your little one is “honeymooning” it may not be the best solution until things settle down anyway.

When it comes to pump choice, I’d highly recommend a tubeless patch pump like the Omnipod - no dangling tubes to get in the way of a busy toddler! And in the next year or so they’re launching a proprietary closed loop system in conjunction with Tidepool.

Try not to worry about complications too much right now - being diagnosed in 2020 means your baby will have the benefits of all the new tech and modern insulins - some of us long termers started on really basic stuff and we’re still fine after decades.