Something is WRONG I Tell You!

Mikayla 1 week after diagnosis                                                  

 

A Mother's Intuition.....

    One Monday, my twenty-three month old daughter Mikayla came up to me asking for her baba (sippy cup). Chocolate milk in, drained. Immediately asks for a refill. Give her a little more with a little less chocolate. An hour later, she's bringing the cup back to me for another. Repeat this pattern every hour. Suddenly the cute "baba-mmm" turns into an annoyance. I am a stay-at-home mom, so when my husband gets home, I complain about how much she drank that day and how inconvenient it is to constantly be hounded for a drink. That night she overflows her diaper during her sleep, not common but not unheard of. The last couple of months she has had a diaper rash that comes and goes, but has lately turned into a yeast rash.

    The same pattern emerges the next day. Again, a sopping diaper come Wednesday morning. By Wednesday, she is still drinking all the time and I start to get a bit worried. She is very snuggly/tired. Hence the wonderful world of the web doctor. Biggest topic for bed wetting + yeast rash + drinking a lot + tiredness? Type 1 diabetes, which often presents in toddlers as DKA first. Diabetic ketoacidosis is where the body cannot use the glucose since the insulin is missing, and glucose is what gives your body energy. Your body starts breaking down itself to provide that energy, while glucose levels continually rise since they aren't being burned off. It can lead to coma and death if left untreated. It's rare for a toddler to have Type 1 says the internet. And the beginning of am-I or am-I-not a hypochondriac starts. Another soggy diaper that night.
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    Thursday comes and I call the nurse at the doctors office. The nurse states that the only real way to know anything is to come in, blah blah blah, the usual drill. I call my husband and ultimately decide to go in. Unfortunately, by the time I call back they are booked through the end of the day, so I make an appointment for first thing the next morning.

I want to preface the following with several pertinent facts:

• I am pregnant and have had extremely bad morning sickness, whereas the only thing I had wanted throughout the first trimester for breakfast was chocolate milk. Hence, I started adding some to her milk as well. Soon she is pulling on the fridge doors and pulling out the chocolate Hershey bottle to give to us.
• If I say bottle in this blog, it means sippy cup.
• The night before the doctor appointment, I find out that my husband has been giving her two bottles of chocolate milk before bedtime instead of the normal one regular milk bottle. No wonder she has been soaking the bed!
• Type 1 diabetes history in our family, of which one of my cousins actually died of at the age of 17. So I was already sensitive to the issue.

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    Thursday night, my husband comes home and we start an honest discussion. I have a yeast infection, I give my daughter a shower simultaneously, so perhaps I have given her my yeast infection?  This is also the point I find out about the multiple nighttime bottles my husband had been slipping her. She helps us out by throwing a tantrum that night while being denied the chocolate bottle. We also deny any juice. Suddenly she doesn't seem as thirsty. Coincidence? We think we have a diagnosis. Toddler tantrum/chocolate milk addict.

    Friday morning, we make our case before the doctor, including our original suspicion of diabetes, as well as our probable diagnosis that our daughter was a bit spoiled on the chocolate milk. We are sheepishly laughing that we came to the doctor for something so minor but chalk it up as a first-time-parenting lesson. He says it's probably nothing, but we can do a urine catheter on her to check if we'd like....but....it was up to us. I cringe at the thought of a catheter for my baby. Nope, it can't possibly be something so severe as diabetes when faced with toddlerhood, so we decline and just ask for the yeast rash to be treated. He recommends Lotrimin athletes foot powder of all things, as the Monistat cream hadn't been working.

    Saturday & Sunday, Lotrimin is working like a charm! Woohoo, we eliminated the yeast, and continue denying her any juice or chocolate milk. Normal weekend, if a touch irritable which we attribute to being denied the "good stuff". The child was never a fan of plain water so that was understandable.
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    Then comes Monday (week two).......Cranky, check! Soggy overnight diapers, check! Somewhat decreased appetite, check! Increased thirst again, even with plain milk and water, check! Mild fever, check! Soaking the bed during naptime, check! Fatigue, check!

    Tuesday (week two) is all of Monday with a further decreased appetite and a greater fatigue.

    Wednesday is picking at food plus all of the above, but it seems like the fever is gone after giving acetaminophen. I am doing laundry like a maniac for her PJ's, sheets, mattress cover, regular day-clothes, my clothes from picking her up while she's soaking wet. She doesn't really want to play with anything, just sit and watch TV (which I allow since it's obvious she isn't feeling well). Teething? Flu? Or the start of DKA.....?
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    Thursday I am excited because both my military brother is in town, as well as my aunt & uncle. My daughter sleeps 13 hours until I wake her up to get ready to pick up my brother from the airport. My mother's sister has never met our daughter before, so we are really happy to show her off....except that within 20 minutes of her meeting my aunt, she pukes all over her. Showers for everyone. I mention to my aunt (who happens to be on her local branch board of directors for the Juvenile Diabetes Research Foundation due to the family history/her nephew) that we had taken her in the week before due to suspicion of diabetes.  Mikayla is basically a limp noodle by the nighttime and eats two saltines as her daily food tally. I'm bummed that my aunt didn't get to meet the "real" Mikayla. My kid is starting to scare me. She is normally super bubbly, non-stop. Her just laying there, without even interest in her favorite TV shows, is super concerning. My husband takes her home early and she proceeds to puke a couple more times that night. I really research DKA and even go check on her at 12:30am to see if she has acetone/fruity breath and that she is still breathing. (My cousin died while sleeping). No fruity breath, just smells like good ole vomit.
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    Friday morning after a sleepless night of being freaked-out, as well as one week after initial doctor visit, I am waking her up early to go to the rapid clinic (no appointment needed/walk-in hours) offered by her Pediatrician's office. I meet with their nurse practitioner and a diagnosis of ear infection is determined to be the probable cause. But you know that gut feeling, where you just know there is something more than just an ear infection? That thing keeping you up checking the baby monitor? I sense there just has to be more to it.

1. I point out the fact that we had just been in the past week due to possible diabetes but hadn't run any tests (yes, kicking myself still).
2. I tell her we have a family history of Type 1 and that I might be paranoid, but I am worried about this being DKA. She (thankfully) is agreeable and tells me that we can test her to relieve my mind. She orders an in-house urine catheterization, as well as at-the-lab stat blood-work. Urine comes back within normal limits but ketones are elevated. It could be from dehydration since she hasn't been eating.
3. I breathe a sigh of relief and head to the lab.
4. The rest of the day Mikayla is still limp. I call the doctors office, which still hasn't received the lab report. I call the lab, they close early at the blood draw office and I have no idea how to get in touch with the processing & results department.
5. I figure that we will find out the next day, Saturday, because the doctor's office (thankfully again), offers rapid clinic for several hours in the AM.

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    Saturday morning, our nightmare begins. It started fine, she is even a bit better, giving my husband a high-five, giggling at Mickey Mouse Clubhouse, and eating a bit. THEN I get a call from the doctor's office nurse practitioner, telling me that the lab report is back. DUN-DUN-DUN, she holds no breath before telling me that her blood glucose came back at 428. My heart sinks. She confirms it by telling me that this means diabetes, no doubt about it. She has called the pediatric endocrinologist to meet us at the local children's hospital Emergency Room and that we should probably pack an overnight bag. My first words to her, after OMG, OMG, OMG, were: "I can't believe I was right".  I didn't want to be right, but there I was with a confirmation of my worst fears. I wasn't a hypochondriac or a self-diagnose web addict!

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    I fought for my child, and my intuition paid off. She looked pitiful, but the DKA wasn't at a horrible level yet and we were able to reverse it completely at the hospital within about 30 hours to be discharged home. I went through a period of self-doubt, which lead to the diagnosis being made one week late and a DKA diagnosis being thrown in at that point. You have to trust in yourself to recognize that you know your child best and that you see your child everyday, of which the doctor only sees them a couple times per year for minutes at a time.

    Don't be afraid of testing like I was initially, the urine catheter wasn't that bad actually (although truthfully the blood draw was worse since she was so dehydrated by that second visit). I just had to repeat to myself that these tests will ultimately help my daughter. I was prepared to continue fighting until I got those tests but luckily the nurse practitioner is a diabetic herself and understood my concerns perhaps better than the average medical caregiver. Not every parent will be that lucky. If its the weekend, go to the urgent care center. Not so drastic as the hospital but with the ability to figure it out. Make them listen to you because it's way easier on everyone to figure this out before getting to the point of DKA.