When we finally took Ada to the doctor for her weight loss and fatigue, we thought it was a parasite. Okay, let’s be real here, we hoped it was a parasite. The timing made sense… our new puppy was diagnosed with a parasite a month before Ada’s troubles began, and we’d had the puppy for two months. It could have been the reason for the weight loss. One or two weeks with some medication and she’d regain her weight and her energy, no big deal.
But, of course, that wasn’t her diagnosis. I will share more about the day she was diagnosed, and the emotions surrounding that day, but the purpose of this post is to share what symptoms we noticed and when. We worried and fretted about her health for weeks prior to her being diagnosed with type 1 diabetes, so we have pretty good documentation of her symptoms during that time:
On March 13, Ada had her yearly physical. They weighed her at 68 pounds, all her vitals looked great, she seemed in perfect health. The only thing that’s noteworthy about this appointment is that I thought she was over 70 pounds. It surprised me to see a smaller number on the scale, but with only two pounds or so difference, I just chalked it up to different scales and dismissed it. Her growth chart looked beautiful (she was 63 pounds a year before,) and I had no reason to expect a problem. I’ll come back to this later.
April 6th was when we started to notice that Ada looked really skinny, not unhealthy, just the lanky build that a lot of kids get. This had previously never been Ada’s build. She has always been a thicker, more muscular build. We were amazed at the changes, and I was excited even because Ada looked older and more grown up. I felt like I could imagine what she would look like as a teenager. We figured she had a growth spurt, and a number of people thought the same around that time.
On April 10th I took a closeup picture of Ada, because her skin was incredibly dry and flaky, even on her eyelids. Ada has never had the best skin, and she has always struggled with dryness and eczema, but it just seemed so extreme at this point that I wanted to document it so I could ask about it at my upcoming appointment with my dermatologist. At the appointment, it was largely dismissed, and I was given some suggestions of lotions to try. Now we know she was becoming increasingly dehydrated and that was affecting her skin.
April 13th was the first time we really noticed that Ada wasn’t herself. We took a family outing to a train museum to celebrate my son’s 3rd birthday. Ada quickly checked out of the experience and looked sad, sluggish and wouldn’t even smile for pictures. I am ashamed to say that I thought at the time she was just being mopey because trains weren’t her thing. There have been times when Ada has been my “glass-half-empty” child. She had mostly grown out of that by this point though, and in the coming days and weeks, my husband and I increasingly worried about her. We couldn’t interest her in going to the park, making things (her favorite pastime,) or playing with her siblings. We worried that she was becoming depressed or struggling with anxiety. We didn’t connect it to her becoming thinner at this point, and we didn’t recognize it as a lack of energy either. She had previous struggles with anxiety, but each time had worked through it within 2 or 3 weeks. We were trying to give it a little more time before consulting a child psychologist, thinking she would do the same this time. We didn’t connect that her disinterest was actually a lack of energy, that she was literally starving as her body couldn’t gather fuel from the carbohydrates she took in.
April 28th we went to church and she stayed in “big” church with us. While rubbing her shoulders, we realized that we could feel the whole outline of her shoulder blade. I think we both realized in that moment that Ada was not just skinny, but skeletal, not depressed, but severely fatigued. We had promised the kids we would go go-karting after church, but Ada looked lifeless and fatigued. She tried her best to power through, and even climbed a rock wall, but she wasn’t enjoying it, and we could tell. We went home, and weighed her the second we walked in the door. She had dropped from 68 pounds to 61 in less than 7 weeks! My mouth dropped open and I’m sure I turned white with the realization of how sick she actually was. We called the doctor and set up the first available appointment with her pediatrician because we love him. My husband was ready to take her to the ER that day, and after thinking a little on it, I called back to clarify how much weight she’d lost and to ask if we should take her to the ER. They asked the screening questions and because she could walk and was coherent, they told us to wait until her appointment on Tuesday.
Monday, April 29th, we reluctantly sent her to school since she wanted to go. We messaged the teacher with strict instructions to call us if Ada wanted to come home or seemed lethargic. She apparently was lethargic all day, but we didn’t get a call. She came home and slept on me for more than an hour. That evening, it was hard to get her attention, she acted a little confused and disoriented. This whole time I debated taking her to the ER, but with barely over twelve hours until her appointment, I decided not to. I barely slept that night, and checked on her often; I was terrified because of how quickly she was declining. Regrets and worry plagued me; morning couldn’t come fast enough.
Ada had some more obscure symptoms too, some I don’t have the exact dates for. For instance, there were a few times very close to diagnosis that I noticed that Ada had flushed skin. She also had ice-cold hands a couple times, but she insisted she wasn’t cold. In hindsight, that was very alarming; I think the cold hands were from poor circulation as her body was increasingly struggling with the diabetes and being in a state of DKA (diabetic ketoacidosis.) In the hospital at some point, I noticed her breath smelled weird; the nurses called it “fruity,” and it is a symptom of DKA; we never noticed this at home.
It’s worth noting that not until right before diagnosis did Ada ever use the word “tired.” We asked her if anything hurt, it was always “no.” I think in her little eight-year-old mind, sick meant hurt. She didn’t understand fatigue, she kept fighting through the tired feeling because she thought she should. Once we recognized she was sick and told her as much, it’s like she felt released to stop fighting it. She had recently mowed the lawn and climbed a rock wall, fighting the fatigue because she didn’t understand it. Overnight, she switched to napping and finally telling us she was tired.
It’s also worth mentioning that between April 28th when we realized how sick she was and April 30th when she was diagnosed, she’d lost another three pounds; that’s how fast the weight loss can be with diabetes and DKA. Looking back at pictures, I believe she actually started slowly losing weight in December or January, but the weight loss was subtle until April, and even then, she didn’t look unhealthy until she was losing pounds a day towards the end of the month.
As important as the symptoms we observed were, the symptoms we didn’t see are equally important. We never noticed any increased thirst or her using the bathroom more often. We know now that she was getting up at night to use the restroom, but we were sleeping through it. At 8, she would get herself water and took care of her own bathroom needs. She is also a kid that doesn’t typically use the bathroom often. This odd characteristic along with her age made the most well-known symptom of type 1 diabetes really hard to pick up on. I share this to point out that there are rare instances in which a child may not present with increased thirst and urination, but still be diagnosed with type 1 diabetes. Weight loss and fatigue were the most prevalent symptoms for Ada, and there were quite a few others that at the time just seemed strange and unconnected to each other.
The hardest part of writing this post is actually sharing the pictures; anytime I look at them, I don’t know how I could have missed how sick she was for so long. She was so terribly ill with diabetic ketoacidosis by the time she was diagnosed. It’s hard sharing about these days because I regret not catching it sooner and allowing her to get this sick. And I know putting it out there may invite judgment, but hindsight is 20/20, and the changes were so slow… until they weren’t. If I can save one kid from getting this sick by sharing, it’s worth it.
From when we first noticed she was looking thinner to when we called the doctor, was 22 days. What may have changed this timeline the most would have been if I’d spoken up at Ada’s 8 year checkup when my gut told me she had weighed more. Because of this, I highly suggest weighing your kids every few months, and writing it down. If I’d questioned it when she had lost only a few pounds (she lost thirteen all together,) it would have saved us and her from a lot of stress and suffering. Also, if your child has issues that seem unrelated, consult your doctor and find out for sure. All the pieces fit once we knew the signs. Thank God it wasn’t too late and she was able to ultimately bounce back. I hope I’ve helped you to know the signs as well.