Tuesday, June 24, 2014

Yes, even babies can get type 1



I just knew. 

Upon hearing that Elise was diagnosed at such a young age, I am often asked how we knew Elise had diabetes. The short answer is, at her 12 month well-child visit, the doctor did a urine test and found sugar. Elise had no symptoms except she didn't gain any weight between 9 and 12 months. A sign that something ominous was coming our way, but as a stand-alone symptom, nothing special. 

The long answer starts way before that. Probably closer to when she was 6 months old. Elise had a UTI. Then, strange fevers that would come and go every day. She would always start the day off normal, then her temperature would rise throughout the day until she was around 103 by bedtime. The next morning, everything would reset. 

She had another UTI. The fevers persisted. Thankfully, Elise's pediatrician didn't write me off as some crazy first-time mother whack-job. She believed me. Between the ages of 6 and 12 months, Elise had kidney ultrasounds, a CT scan, and a VCUG (a test using x-ray to determine if there are any bladder abnormalities). She was also seeing a pediatric Nephrologist (kidney doc). 

Everything kept coming back as normal. But my gut kept telling me that something was wrong. She wasn't the same little baby she had been just a few months before. She hardly ever smiled anymore. She was cranky. And those fevers just never went away. Still, there were none of the classic signs of type 1 diabetes. 

When she finally was diagnosed, she was in the very early stages; her fasting was in the 120s. Her A1C was 6.5. She wasn't even on insulin at first. But being vindicated has never been so heartbreaking.  

I often wonder how long it would have taken to recognize the tell-tale symptoms of type 1. Would her story, like so many of the babies, be one of almost losing her? As much as I hate the diagnosis, I am thankful we didn't have the added trauma of that. 

So why do I write this? Because sometimes, when I'm bored (which isn't all that often anymore as you can tell by my posting frequency), I look to see how people stumble onto my blog. And the phrases that make my heart skip a beat are ones like: 

Can babies have diabetes? 

Something is wrong with my baby 

Symptoms of diabetes

To those of you who find this post by googling something like the phrases above, I say this to you: Trust your gut. You know your child best. If your doctor scoffs at the notion of type 1, demand a test. It takes 5 seconds. If they won't, go to a pharmacy and buy a meter that comes with some strips. That $30 could save your child's life. Elise's pediatrician is amazing, but not all doctors are so willing to listen to the parents. 

And above all, if your child has any of the symptoms for type 1 diabetes; unexplained weight loss, unquenchable thirst, frequent urination, uncontrolled hunger, fatigue, nausea, stomach pain, blurred vision, rapid breathing or fruity-smelling breath, get them to the nearest ER as quickly as possible and ask them to test for type 1.

This post has been on my heart for awhile.  Ever since I read (yet another) story of a child passing away from undiagnosed type 1.  The parents sought help (multiple times), but the doctor ignored the symptoms, saying it was the flu.  This doesn't have to happen. It shouldn't.

Parents, know the symptoms.  And above all, trust yourselves.


  1. blech...this is one topic that still makes me feel ill. Isaac's ped, even with the knowledge that TJ has t1d, said he was just teething. At his 18 month check up I revealed that I had checked Isaac's BG once when he was really fussy (not his typical behavior) and his BG was 200. The pedi said that was probably just due to growth hormones, fighting a virus, etc. I just knew things were off - so at 19 months I hated being right and finding out that he did have t1d. Never have I wanted to be proven wrong and over the top so much. Glad you guys had such an incredible dr that took you serious. We are lucky that we had TJ's glucometer when we did.

  2. I do that too, look at the searches that found me. Some are just heartbreaking and other are a little concerning, such as: stripper shoes... i have no idea what thats all about ;) Great post.

  3. Joanne, this is so wonderful! You are so right, demand a test! I wish I would have so that Carter wouldn't have suffered an extra 4 days until we finally ended up in the ER. These days especially, because doctors can brush us off as fanatical mothers, we try to not be so out of the "norm", whatever that is. It is so important to fight and demand what we know our children need. I'm so glad Elise is doing so well, she is lucky to have a mommy like you! I love reading your words! XO!

  4. Thank you for writing a post that will help so many! As we approach our 4 year anniversary this definitely hits home and how we almost lost our babie. xoxo


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