Our Diagnosis Story

Dear Reader,

In case you don’t have a child with diabetes, a diagnosis story is a lot like a birth story. Moms love to tell them. There may be prizes for whose is worst. I’m not sure. Ours may not be prize-winning but it is still traumatic for us. I will probably be posting a lot on dealing with my daughter’s diabetes. For you to understand any of that, we need to start here.

So, the year is 2003. I have 2 kids, ages 3 and 1 and am expecting #3 in November. Also, we just bought our first house and are moving in soon. My one year old daughter, Sparrow, seems clingier than usual but we attribute it to all the stress. She is obviously really smart, right? She is picking up on all the changes we will be going through soon and so is more attached than usual. She does seem to drink and pee a lot, but, well, the peeing follows the drinking.  We think she is just attached to her sippy as something to suck on. Sure she pees all over everything, needs clean sheets after many naps, soaks friends’ couches at playdates, but, well, we are clueless.  I joke to my husband that she may have diabetes or rabies but we are not concerned enough to take her in to the doctor. We also notice she seems slimmer but she is one and half and is losing her baby fat, right? She must be getting taller too, just thinning out. 

Finally, one Friday she has a cold. It is pretty minor. By Saturday, her cold like symptoms are gone but she seems overly tired. We go to a baby shower and someone comments on how lazy she seems lying in my husband’s lap but again we dismiss it. She is getting over her cold. Must just still be tired from that.

Sunday morning, we decide she is too sick to go to church still. I go alone with my 3 year old. My husband plans to go to evening service. About midafternoon, Sparrow wakes up from yet another nap. She is acting feverish–not doing much and laying around. I keep taking her temperature but it is normal. She hasn’t eaten today but she is drinking a lot so that is a good sign, right? Finally, I notice that she is breathing loudly and somewhat rapidly. I tried to count how many breaths per minute. I don’t remember now what it was but I remember thinking it seemd fast. Finally, I decide to call the pediatrician about it. Of course, it is a Sunday afternoon so I get a call back after a while from the doctor on call, not our usual ped but one of her partners. I describe Sparrow’s symptoms and she says without hesitation and without having heard Sparrow’s breathing, “It is croup; croup is going around.” Now, neither of my kids has had croup but I have heard that it sounds like a barking cough. This is not what my daughter has. She isn’t coughing at all, just breathing loud and fast. I point this out to the doctor who says, “well, if you don’t believe me, take her to the ER.” So I’ve kind of dug myself a hole. Either I agree it’s croup, which I don’t think it is, or I take her in. I don’t want to go to the ER. My husband will have to miss church. But I agree to do it anyway.

It takes us a short while to get to the hospital. I have to look up where it is. When I get there, Sparrow is listless again. There is really no word but lethargic for it. She just lays in my arms as I carry her in. I can still picture the little green dress she wore and her green winter coat (did I mention that this is October 26th? You never forget the date).  They took us right in at the hospital. It as kind of a slow night I think but I also think they took one look at this tiny girl and knew something wasn’t right. The hospital (Winchester Hospital in MA, btw. We love them now though we’ve moved out of their area), particularly the nurses, were wonderful. They didn’t know what was wrong but they knew something was and they threw every test in the book at Sparrow till they found the problem. They kept checking to see if her neck was stiff to indicate meningitis. They did a chest X-ray. I had to step out for that because I was 37 weeks pregnant. They were just going to take her for a head CT (as I recall) when they got back the results of her urine test. Diabetes. Type 1, aka juvenile. Urine is pretty conclusive on this. The staff begins to switch gears now. Tests are over but they are calling up doctors at Children’s Hospital in Boston to get instructions from them and arranging to have her transferred there. They are all very reassuring, telling me Sparrow will be fine. I wish of course that I had been less clueless and had caught on a month earlier that my little girl had something serious going on. But it is also a blessing I think that I didn’t know it was something serious till we had a diagnosis already and they were reassuring me that she would be okay. So we ended up with an ambulance ride into Boston, a day in the ICU, and a few more on a  regular floor while we learned to check our 19 month old’s blood sugar, count every carb she eats, and give her daily injections of insulin.

That’s really the beginning, not the end, of the story. If there is a moral, it is don’t wait to have your child’s symptoms checked. The symptoms of diabetes are excessive thirst and/or urination, weight loss (we found out later, btw, that Sparrow had lost 5 pounds in about a month, dropping from 28 to 23 lbs before she was diagnosed), and loss of energy. It is very easy to test for with a simple blood or urine test and the sooner you catch it the better. Waiting to long can be fatal.

Nebby

One response to this post.

  1. […] then one year old daughter, Sparrow, was diagnosed with type 1 diabetes (read about her diagnosis here). It was a hard time. My blood pressure at 37 weeks pregnant went through the roof. We were nervous […]

    Reply

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