Newly diagnosed 4 year old in UK

Hi all new to all this unfortunately. My little boy was diagnosed nearly 4 weeks ago so still all very fresh! Weve been having lots of high levels at night time when he’s asleep it does goes down after we give him a correctional dose and normally stays steady through the night. we have spoken to the specialists and in turn they have spoken to the doctors and decided the only way to stop the highs is to put him on a pump! They gave us a couple of ones to look at which are the Medtronic 640g and the Omnipod Dash.

Would really appreciate any recommendations as to which would suit his age?

Many thanks in advance.

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@markkerns1986 Hi Mark, and welcome to the JDRF TypeOneNation Forum!

I don’t have a child, grandchild, with diabetes, so my information is only second hand - although during JDRF meetings I’ve been surrounded by kids with diabetes, some using pumps. You do not mention your son’s age. Having lived with diabetes through seven decades, I am very much aware how difficult it is to get insulin doses at the correct amount, and with the proper timing.

A pump is not the only way to manage childhood diabetes; a real-time, or continuous glucose monitor {a CGM] could very well provide you better service. A CGM will allow you [and doctors] to see glucose trends 24 hours every day [mine gives 288 readings per day], see the effect of food eaten and insulin dosed. Insulin can be dosed pro-actively to prevent mountain peaks and deep valleys. Thresa May very proudly wears her Abbott Freestyle CGM on her upper arm - even during state dinners, while wearing sleeveless gown so she can be aware of her glucose level and adjust insulin.

Now pump suggestion: if your son is “young”, the Insulet OmniPod might work well; if older and responsible, the MiniMed 640G could provide better service. But keep in mind, a pump will not provide better diabetes management without you programming correct food:insulin ratios, basal rates and insulin sensitivities - all these for multiple daily periods.

Insulin dose rates never becomes set in stone, especially among the young. The body is a living organism and constantly changing.

Dennis thank you very much for your information. My son is 4 as I stated in the title of my first post! I shall use your information and do some research as to what will suit him best he is used to the jabs now so maybe a cgm will be better in the long run!

Many thanks again.

Hi @markkerns1986 welcome! Hey the next thing that happens is usually “honeymoon “ this a a short time where he will start making insulin again. It doesn’t pay to make big changes yet because the beginning is a roller coaster. You’re best bet is to read up, buckle up, and stay calm. Kids “acceptable range” is usually higher. This is because lows can be dangerous.

Keep notes, keep in touch, I hope you have all good people on your medical team.

@markkerns1986 Mark, you are doing the correct things a parent can do. Investigate, ask, research and consult. This may seem out of place, however, here in the States the expression “pulled my hair” is used when one is extremely frustrated. Please don’t pull your hair out.

Diabetes is complex, perplexing, and bewildering, failing to respond to science and reason. One Certified Diabetes Educator nurse once answered a question I asked with a single acronym, SWAG. She elaborated chasing answers to “Why?”, blood sugar level responses, and other diabetic conundrum was a Scientific Wise Ass Guess.

The point is you have been given wise council. @Dennis & @joe are two of the sharpest minds here. I would add one idea, (not knowing what is approved in the UK) where does a pump with integrated CGM stand in the treatment options?

Please share how this journey progresses. Sharing is how all of us learn. Stay safe.

Hi @markkerns1986. I just wanted to say, I was 3 years old when I was diagnosed and just submitted for my Joslin medal/award/something-or-other😊 for this with 50 years of diabetes (I have even more). Plain old BG meters fit home use didn’t come out until about the the I graduated college and the geniuses who designed CGMs probably had not even been born. Insulin and knowledge of how to use it was very rudimentary at the time - now we have multiple types with varying duration and “peak patterns” as well as delivery systems (pump/syringe & bottle/pens). And of course some CGMS allow us to share our readings if we want or need to.
I’m sure you’re feeling overwhelmed with the news and the learning curve, but with time you’ll find you know he to respond almost intuitively.
There’s a book called Think Like a Pancreas the most recent edition of which came out over the summer. Many people find it helpful.
Wishing the best for you and your son. Having diabetes does not have to stop him from enjoying a full, healthy life.

The best advice that I could provide is to give your child the responsibility of managing his T1D as soon as he can. Obviously, at the age of 4, most of the burden is still on the parents. Whenever you take his blood sugar (or look at the CGM app because he should definitely have one), tell him what it is. Ask him to describe to you how he’s feeling when he’s high, low, or in range. Tell him how many carbs he’s eating and how much insulin you are giving him even if you don’t think he’s retaining it at such a young age. He should be learning how to manage diabetes just like he’s learning how to read and tie his shoes. The biggest mistake a mother or father can make with a diabetic child is being a helicopter parent and trying to micromanage your child’s diabetes. No parent can know their child’s body like the child knows their own. Please remember that as he ages.

And get him an omnipod, but also make sure he knows how to manage his sugars without the pump.

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I agree @drewoconnell - at 4 or 5 years old I could tell my mom or dad “I feel funny” even if I didn’t have the words to describe precisely what was going on. We literally had no way to measure my blood sugar at the time so they assumed I was “having an insulin reaction” and gave me a snack.
Diabetes camps were great when I was a few years older.

Hi Mark: I was an adult when I went from injections to a pump. As an adult I have had to be careful about infusion lines catching on doorknobs, drawer handles, etc. A much younger T1 on my street who had a Tandem swears by the Omnipod. One reason is bc there’s no infusion line. I have also read that this is good feature for kids wearing a pump in reviews of the Omnipod. All of us who are long term T1’s wish you the best.

Snagging is definitely something to take into consideration, as well as the pump dropping when you get out of bed if you don’t use a clip. I usually tuck my tubing in a pocket or inside my waistband so i don’t snag much - but I’m not going to say it never happens😉. I’ve found the infusion sets are pretty secure so I haven’t had any pull out from a snag or getting out of bed.
Keep in mind that if you go tubeless you need to be sure to keep your remote control (I think it’s called a PDA) with you - as I understand it you can’t operate the pump without it. Check the specs to confirm though.

HI Mark,
I just saw this and am wondering what you decided to do for your son? I was diagnosed at 2 1/2 years old back in 1964. As has been stated, we didn’t have home blood glucose monitors then or CGMs or insulin pumps. A lot has changed in that time!

I currently use an Omnipod Dash, but that is a recent change for me. Previously, I used a Tandem T:slim X2, which I loved. Still not sure about the Omnipod, but I wanted to try it. No tubing is a nice thing. No more worrying about where to wear the pump (IE: do I have pockets to put it in, or do I need to be creative).

My first pump was a Medtronic, which I did not like. Their sensors were not accurate for one thing. In fact, I switched from the Medtronic sensor to a Dexcom. The draw back was that the Dex did not communicate with the Medtronic. When I switched to the Tandem pump, that issue was resolved. Omnipod has been working on communication between their pump and Dexcom. I had heard the new program was going to be released this year, but I have not heard any more about it yet.

The drawback for me of the Omnipod is that I have to carry the PDM (Personal Diabetes Manager) with me everywhere because it is required in order to bolus the insulin. The basal, or background dose continues with or without the PDM. My concern is leaving the PDM at home when I go to work. If I forget it, I’m out of luck. With the Tandem, I bolused directly from the pump. No worries about forgetting it at home since it was always attached to me.

These are my thoughts on the different pump options available here in the USA. Please let us know what you decided and how you and your son are doing.

Pam K
T1D 57 years and counting!

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