Feature Friday: Nik and River
This week in feature Friday with Nik and River! We are learning about River who is a 3 year living with Type 1 Diabetes, from his mother Nik’s perspective. River and Nik are both warriors and despite the guilt, tough days, and exhausting nights. Diabetes isn’t easy but Nik is learning how to help her child and be his best advocate! I am proud of her and I hope you enjoy hearing from this family as I did.
Diabetes and Autism
River was diagnosed a couple of weeks after his 2nd Birthday, in moderate DKA, looking back he probably had symptoms for a couple months (which we had no idea about). He was also diagnosed with Autism around his 3rd birthday. Which can make managing his diabetes more difficult as there is also food sensory issues, as well as a lack of communication and understanding. He now sees an Occupational Therapist and a Speech & Eating Therapist every week.
All summer, River had been drinking a lot of bottles, all he wanted was bottles. He therefore had lots of wet nappies and wet outside most nappies. We tried different brands, we tried everything and he still wet through his nappies. He started loosing weight. I thought initially something might be wrong with his kidneys or something else due to lack of food and increased milk intake. One day, he had a strawberry milk and vomited it up. We thought was odd but had no idea what was really happening.
Also, he started looking sick (we see that now looking back in photos) and was sleeping more and always looked tired. I had two older boys and thought, they never were like this, something doesn’t seem right. So I googled his symptoms one night around 8pm. I typed in one big sentence into search bar “lots of drinking, lots of weeing, vomiting, tired, loosing weight” and the first and only thing that came up was Type 1 Diabetes.
I told my husband, I think River has type 1 diabetes, he basically said no he doesn’t, get off google, if you are worried take him up to ER then. River was peacefully asleep and I didn’t want to wake him when maybe I was just being paranoid. The next morning when River woke, he basically couldn’t get his head off the floor. I was like this is not normal, even when my other boys had been sick with all different illnesses, they never looked like this.
Being a Child’s Advocate
So I took him up to the Prince Charles childrens ER which is about 10 mins from home. The room was empty and I straight up said to the triage nurse, I want him tested for type 1 diabetes. She looked at him and said “no his mouth is not dry so its not that.” I said , he has a drink constantly in his mouth so of course his mouth isn’t dry which she replied “he would still have a dry mouth.” Anyway as the room was empty, they took us in fairly quickly, did a finger prick and ketones check, walked out the room and the rest is a blur but lots people coming in and out room.
I am fairly sure they said blood was around maybe 38 and ketones around 6 (again it was a blur and my sleep deprived mind has blocked out as much as it can of that traumatic day) and then I remember drs standing around looking sad and said that I was right, he has type 1 diabetes and he is in mild-moderate DKA. He needed to be transferred by ambulance to the ICU at Queensland Children’s Hospital. I like being right, but I never wanted to be right about this.
The next hour putting 2 drips in one in each arm was the most traumatic thing ever for him (and I). It was very difficult and took over an hour to get them in and 6-8 people to hold him down that entire 1hr. He was so exhausted and his DKA was worsening as they couldn’t administer any fluids or insulin yet. We then spent 2 days in ICU and then I think maybe 4 days in the ward learning the very basics and getting put on a insulin pump. It was pure hell. No sleep, haven’t had that much sleep since either and still have so much to learn.
Note: There was no type 1 in the family, I have an auto-immune disease (hypothyroidism), he did have an infection a few months before diagnosis and also when I started seeing the signs (which I had no idea back then, only know now looking back).
I was upset that I didn’t pick up on the signs sooner or know what the signs even were. Looking back I’m not sure I knew one single thing about type 1 diabetes. It’s sad that it took a google search and insisting at ER for them to check him based on my google search. Another day and he may not have survived. I still carry around a lot of guilt about not knowing the signs sooner and what suffering he went through.
What helps you as the caregiver and your child thrive with diabetes?
Surrounding ourselves with people that are kind, understanding and supportive.
What you wish you knew earlier…
To do your own research and learn as much as you can and to be your childs advocate. Stand up for them, learn as much as you can for them.
Words of Encouragement
This is more so advice, to try find yourself another type 1 parent that you can speak to for support. I have made some great type 1 mum friends who I know I can message (and they can message me) any day or night to ask anything. We can vent about anything, share the wins, share the bad days and the stresses. Having someone that just gets it and a safe supportive environment for each other.
Always have a box of ketones strips around! Also, always do ketones test if vomiting, even if its related to gastro or alcohol. Never presume ketones are fine, always check.
Nik and River (Instagram)
Check out last weeks feature HERE!