River's Diagnosis

Traumatised by having these 2 drips put in, thank god he probably can’t remember it.

ICU

January 2020

September 2021

Hi, this is River’s Mum - Nik. You may have seen me around on the facebook group as I am a volunteer for the T1F. I thought it was time I told my story here on River’s diagnosis.

So lets start at the very beginning, before diagnosis…

In November 2019 River had pain when doing a wee, I took him to the ER and was diagnosed with Balanitis.

Which is basically an infection in the head of the penis. One of the causes is “Someone that has diabetes because the increased glucose (sugar) on their skin can stimulate bacterial and fungal growth.” - However he was never tested for diabetes….

He never had a dummy, so his bottle of milk was his favourite meal and comforter and being in hot QLD summer, drinking lots, didn’t seem to odd. I remember thinking was a little strange as my older boys never drank this much, but then they had dummies too… I actually became a little concerned about the effects of him having so much milk and if that posed any risk, I think I might of had a quick google but didn’t come up with anything to warrant a Dr visit (and this is coming from a mum that would usually take kids to drs when worried about something).

As the summer of 19/20 went on, he continued to eat less, but drink more, always always drinking. And therefore always weeing, so many wet nappies, so much wee outside of nappies. We just thought it was because he drank so much. We bought all different brands and sizes of nappies. Nothing helped. He was always a bit chubby but you could see his spine and ribs and face looked skinny, but then I just thought was because he didnt eat much and had recently been vomiting too….. I had no clue…..

January 2020, he turned 2, we were on holidays and he was sleeping more then usual too, but again I just put it down to something else “having lots of fun at the waterpark”. We got home from holiday and things went downhill quickly , I started to really think, all this stuff just doesnt seem normal, not compared to my older boys. So one night after River was asleep around 9pm, I laid in bed and googled “toddler drinking lots, weeing lots, loosing weight, sleepy and nauseas” all in the one search bar search. One answer came up. Type 1 Diabetes. I dont think I had ever heard of type 1 diabetes. I think i had heard of type 2 but knew nothing about it. I turned to my husband and told him I googled and that I think he has type 1 diabetes, he told me to get off google and if I was so worried to take him to the ER. River was asleep and I didn’t want to wake him and take him to ER just on my google search, because surely I’d be wrong. The next morning, River could barely function, he could walk a few steps then would lay randomly on floor, was like he was about to go unconscious at any minute, so I decided around 6am something was definitely wrong and took him to the ER.

We got the the ER within 15 minutes and thankfully for once it was empty and I said to the triage nurse I’d like my son checked for diabetes , told her his symptoms and what I had googled. She asked if it was in family, I said no. She checked his mouth to see if it was dry, it was not, he was drinking…. So she said it wont be that…… Lucky we got taken in straight away and they did a quick finger prick and within minutes were told he had high blood sugar and moderate ketones and its kind of a blur. I can’t recall the exact numbers now I think the BGL was high 30’s and Ketones were maybe 9 , I cant remember, those numbers didn’t mean anything to me at the time to think to remember them I guess. I had no idea what they were talking about. Within a few more minutes we had dr’s enter the room and confirm he has type 1 diabetes and was in DKA and had to be transferred to another hospital to go into ICU to begin immediate treatment and then we would be spending a week in hospital for training. If I hadn’t of taken him in when we did he may of died. Always trust mumma instinct and Dr google is sometimes right!

It was very traumatic for him and I whilst they had to have many drs and nurses hold him down to put a drip in each arm and this took a very long time , it was horrific. As he was in a fragile state they couldnt risk any sort of sedation.

In the ICU he was hooked up to his insulin and fluids and slept most of the time and I laid in bed holding him entire time. When it was time to come off the drip and start injections it was not nice seeing my baby have so many needles and finger pricks (he loves finger pricks now) . It got to one point I said to the Dr about to give him another injection “no more needles, leave my baby alone” and she said “this is his life now, if I dont give him this needle then he will die, he has to have needles every day or he will die” . I just cried. Not my baby, he doesnt understand, why couldnt this disease have waited til he was older and could understand and I could talk to him about it (River also has autism and communication skills are delayed) .

Then came the education side of it all, still really had no clue, and due to no sleep , nothing was sinking in. All these words I had never heard of basal, bolus, pump , cgm, hypos, mdi, carb counting etc. I swear there is an endless amount to learn about type 1 diabetes and after nearly 2 years I am still learning everyday and know I still have so so much to learn. We decided to do a pump as MDI was not working out for us and were lucky enough to qualify for one through the JDRF program. We stuck to finger pricking for first 6 months , but then changed to the Libre , all these devices have pros and cons.

Its been nearly 2 years and we still have terrible levels (for example last night he was stuck on 20, then dropped to 2 by 3am, but couldnt wake him to give him juice, finally got some milk in a baby bottle into him, then he shot up to 20 again) , he is a fussy eater, wants to graze all day long, doesnt like proteins like meat and eggs . He is also in weekly food, speech and occupational therapy. I had to give up my dream business which was successful and at that time that decision was so hard, but now I feel like I can be a better mum to River and of course can use any free time to now volunteer with the T1F.

I still carry a bit of guilt about not knowing the symptoms and not realising sooner. As a parent I feel like you are warned a lot about meningococcal and sids etc, but type 1 diabetes is not something you are aware of as a parent. Looking back at photos that summer, he didn’t look well but I didn’t really notice, looking back at those photos of him I feel sick. I wish all parents knew of the signs, I wish all GP’s would do a quick and easy finger prick when a parent presents with concerns, we need to avoid children being diagnosed in DKA. I feel terrible for how shitty he must of felt all those months , every time I fed him I feel like did he think “why does she make me eat this food that makes me feel so sick”. . I am trying to everytime something goes wrong with diabetes (daily!) I try blame the disease and not me, not river.