T1D Sensory Squad

“How did you know your son had Type 1 Diabetes?“

Let’s deep dive into our experience and my son’s symptoms that led to a Type 1 Diabetes Diagnosis!

“What does he have – Diabetes?! Ha! No way!”. The thoughts I said out loud when trying to navigate the symptoms my son was having. Boy, was I wrong!

So, how did we know? As a nurse, I know the symptoms of diabetes. You know, increased thirst, excessive urination – classic signs. All, that my son had that I thought were without a doubt, not possible for him to be diagnosed with Type 1 Diabetes.

Lets back up. It started the week before. My son had his first case of Hand, Foot & Mouth Disease on Thursday, August 10. It was a mild case, lasting about 24 hours and then he was back to his normal self without a doubt.

As my son was newly potty trained, I recall the next week starting Monday/Tuesday, he started to ask for something to drink at night. I thought, “Oh, this is what kids do to delay going to bed. They ask for things to drink, to go to the bathroom, that’s exactly what this is”, and then I didn’t think too much about it.

Wednesday, both Frank and I were at work, and when I got home, the babysitter who was with Cesco all day, basically ran out of the house after a hard day. She said Cesco was not himself at all; he was crying, whiny, not feeling well and wanting us majority of the day. I thought how odd, that’s definitely not like him, I wonder if the Hand, Foot & Mouth virus is still present and making him not feel well. I must have noticed the drinking at night continued and bathroom breaks, because Friday I went to work and spoke with my colleagues about his symptoms concerned, but even joking saying, “What does he have? Diabetes?!” That comment still haunts me. Type 1 Diabetes sounded so foreign and far fetched to me. My toddler having Type 1 Diabetes? Not even a thought in my mind, that could never be possible.

I got home from work Friday night and we were playing outside on a beautiful summer night. Cesco had his usual energy and was running around outside. We played basketball, he rode his bike, and he ran all around, from outback to outfront multiple times. He had to take a few bathroom breaks pretty frequently, and he chugged an entire water bottle outside. He never does that! He’s a kid I have to beg and plead, all day long to drink his water. That raised some questions, but again, he was his normal self so I thought he must be hot – it is August and he’s running around outside!

Then, we came inside and face-timed by parents. They watched him that day while we were at work so I asked about his day, and became increasingly alarmed when I learned more. My dad told me that he had about 5 water bottles, three glasses of orange juice and a few glasses of milk and peed several times throughout the day, sometimes every five minutes. I thought to myself, “WHAT!!!!”. I knew something was seriously wrong. He never drinks that much. Again, diabetes crossed my mind but no way, the chances of him having diabetes? Slim to none, so I thought. Then, all my nursing experiences and thoughts started running through my head – “His electrolytes are definitely off. Is that all it is? Does he have adrenal insufficiency causing this?”.

I called my aunt who’s a nurse, who agreed, he needed his labs checked asap. I called his pediatrician. The nurse called me back right away, I went through his week and how his symptoms increased throughout the week to today, being Friday, extremely excessive. The nurse grew alarmingly concerned. She told us to pack a bag and head to the ER – “You could be there up to a week, I think your son has diabetes”.

Thinking about this makes me tear up. How was I so ignorant to diabetes? It just seemed so far fetched to me. I never took care of Type 1 Diabetics as a nurse, I took care of Type 2 Diabetics. I didn’t know a lot about Type 1, but again the nurse’s concerns fell on deaf ears because it just seemed impossible that my three year old could have diabetes. I told my husband, “He doesn’t have diabetes but his electrolytes are definitely off”. We packed our stuff and headed to the ER.

We arrived at the ER and checked in. I told them our pediatrician sent us to be checked for Type 1 Diabetes, and Cesco’s symptoms from the week, most notably his excessive thirst and frequent urination. I sensed from the ER staff, that we were in agreement that it probably wasn’t Diabetes, but luckily they took us back within a few minutes to check a finger stick. I’ve used the same accucheck fingerstick machine multiple times working as a nurse in the hospital, taking care of DKA patients. They poked his finger, and the machine read HIGH. My heart sank. My stomach sank. That was all I needed to see to know right there in that moment, my son has diabetes. The ER staff didn’t tell us the results, they just told us to come with them as they brought us back to the room. A million thoughts were going through my head. I looked at my husband. He had no idea what I knew at that time. He didn’t see the “HIGH” result on the machine, and likely wouldn’t have known what that even meant. As we walked back together, I looked at Frank and said, “He has diabetes”.

Tears are in my eyes reliving this. It was one of the scariest moments of my life. Your sole job as a parent is to protect your child. I thought, “What did I do? How could he have diabetes? What is happening? Is this temporary? This has to be just induced from his Hand, Foot & Mouth and will reverse when the virus is out of his system”.

A doctor met us immediately, telling us he thought my son had Diabetes, and that they were going to put an IV in, draw labwork and start IVF.

This experience proved to be extremely traumatic for all of us, especially Cesco, being a child with sensory needs. He was in an emergency room, with multiple people attacking him, in a rush, getting his vital signs, putting things on him, and this was very overwhelming for him. He soon pannicked and flooded with tears, screams, full on hysterics. It took multiple people to hold my son down to put an IV in him and that to this day is one of the worst things that haunts me to this day. Frank and I both had tears in my eyes. Cesco had no idea what was going on and was terrified and that’s something you don’t ever want your child to feel.

They missed the IV.

“Dana, you’re a nurse. You know this stuff happens. It’s not the nurse’s fault. Could you imagine trying to put an IV in in this situation?” But, all I could think about was how scared Cesco was. He was started to convulse almost at this point. Like an exorcism, his screams and cries coming out of him so violently. He was so scared. We’ve never seen him like this and it was an awful feeling seeing your child like that. Frank and I both had tears running down our face, crying heavily with Cesco, seeing how much pain and distress he was Welcome to our two new worlds, diabetes and a sensory processing disorder.

They got the IV on the second try, we attempted to get him settled. Frank held and rocked him so tightly praying his cries would stop and he would feel comforted and alright, again.

His bloodwork came back. His blood sugar was 824. 824!!!!!!!!!!!!

Soon our world would encompass everything Type 1 Diabetes. The doctor came in, explained what was happening, his diabetes had gone unmanaged for some time now that sugar built up in his bloodstream and could not enter his body’s cells to turn sugar into energy. It turned to muscle and fat to break down for energy, explaining why he was looking a little thinner and scrawnier than usual.

Cesco was started on an Insulin drip and soon we were admitted to CHOP main campus’s Endocrine floor with a new diagnosis of Type 1 Diabetes.