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17 month old daughter T1

L

Leinad

Newbie
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4
Hi all

2021 was soposed to be a good year for us with a fresh start in a new home but literally 10 min before the fireworks on new year's eve my 17 month old daughter started to have a low grade fever.
This continued for a few days and she slowly deteriorated we checked NHS guidance and it indicated wait 5 days before going to the gp with a fever.

On the third night she drank so much water she vomitted all over the bed. We decided to phone the gp they where suspecting sepsis so they sent out a paramedic the last test he did was blood sugar and she was through the roof.
She got rushed to hospital and diagnosed type 1.

She is currently in hospital they have got her stable to some extent but face a issue where the lowest possible dose of insulin on the pen is to much for her because she is so small.
So she almost constantly has high blood sugar.

The doctors have decided that in this state it is not manageble with out a pump as it can give smaller doses, so hopefully on Monday we should be receiving a pump and cgm.

I am slowly getting used to the idea but still filled with dread and fear.

Any body else in this circumstance any advice is welcome at this stage.

I am incredibly greatful to the NHS for helping us in these trying times with covid and it is quite scary to be in the hospital at this moment in time.
 
I am so so sorry this has happened to you and your daughter.

I can't comment on the logistics of managing T1 with such a young child but know that there are posters on here who have done so.

I just want to reassure you that however bad things seem now there is light at the end of the tunnel.

Modern treatment for T1s is light years ahead of what it was 50 years ago when I was diagnosed, and there is no reason at all why your daughter can't lead the (long and healthy) life she chooses. Pumps and continuous glucose monitors make all the difference for new T1s and though I'm sure you are currently devastated your daughter will get used to the new normal and will never know any better.

Lots and lots of virtual hugs. You can do this.

ps I've been promised a cure in ten years for the last 50 years so I'm not holding out for it for me, but I think that treatment for your daughter may eventually get so good that it's near that. But don't hold out for a cure, concentrate on getting through until she's old enough to start to take charge herself. Good luck.
 
Reactions: ert


Thank you for the kind words I do appreciate it, at the moment it still allot to take in and it's a steep learning curve. Lots of anxiety about the first days at home without the helping hand of the doctors.
But I think we will manage fine its just hard because she is so young and we can't explain to her what's going on.
 
Morning,

We were in a similar position in 2017 when our daughter was just over two years old.

We also went straight to a pump and CGM set up and we have literally had many ups and downs with varying levels
.

We are now on a trial using the CamAPS FX app which has massively improved our quality of life as a family. This uses intelligent basal auto calculation and can cut the basal if needed, which massively helps reduce hypo's. It also removes the need to constantly readjust the basal with your clinical team as your child grows and the insulin needs change.

If the pump and CGM set up haven't already been determined I would recommend this or looking at other loop based set ups.

I hope this helps, wishing you all the best for the future.
 
Welcome. It takes quite a few weeks for blood sugars to come down into the normal range, so they would be also keeping the insulin dose low, allowing for this adjustment time. Wishing you all of the best.
 

Thank you for the info. I think my daughter is getting a Medtronic pump and cgm.

Does the CAMAPS FX only work with the Dana rs pump?
For future reference how do you get on one of these is it supported by the NHS ?
 
ert said:
Welcome. It takes quite a few weeks for blood sugars to come down into the normal range, so they would be also keeping the insulin dose low, allowing for this adjustment time. Wishing you all of the best.
Click to expand...

That's good to know thank you.
I was starting to worry how are we ever going to get her glucose under control it takes so long for the insulin to work.
 
Leinad said:
Thank you for the info. I think my daughter is getting a Medtronic pump and cgm.

Does the CAMAPS FX only work with the Dana rs pump?
For future reference how do you get on one of these is it supported by the NHS ?
Click to expand...
Hi,

It's only on the dana at the moment. Not sure as to availability per each NHS trust as we got ours on a clinical trial via Cambridge initially, with our clinic (UCLH) now providing the cost of the consumables.

There are other closed loop based solutions, but this way we were fully supported via the NHS and didn't risk invalidating our pump guarantee.
 
 
I was 43 when I was diagnosed so I can't help with treating a tiny tot - but I will send virtual hugs your way because I know how much of a shock this diagnosis will have been xx
 
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