Type 1 Diabetes Mom

  • Nov

    Ten Years of Being a Type 1 Mom

    When our daughter, Chloe, was only 18 months old, she was diagnosed with Type 1 Diabetes, an auto-immune disorder where some of her own white-blood cells attack and destroy the beta cells in her pancreas that create insulin. So unfortunately this has become a large part of our life now as we constantly balance blood sugars, insulin, carbs, and activities. I don't think I have had a solid night's sleep now in twelve years as I get up every night (at least once) to check Chloe's sugar- and she was only a baby when she was diagnosed, so I was already getting woken up because of that!

    While there have been many advancements in technology to help manage type 1 diabetes, the actual treatment hasn't changed since it was first discovered in 1921...insulin must be injected into the body (via needles or an insulin pump) for each meal. Although insulin pumps and CGMs have come a long way, what I really would like to see some day is an actual cure!

    It’s been over ten years since Chloe was diagnosed, and while some things have changed, much as remained the same. Chloe must still check her sugar many times a day (up to ten times) and every three days she needs a new site change for her insulin pump. Just this year a new insulin pump has come out that works with a CGMS as a closed loop system, which is pretty amazing, but the CGMS sites are VERY expensive and not covered by insurance...plus they are yet another site that must be inserted under the skin every six days (and the insulin pump is every 3 days.) These site insertions are painful (it is a needle inserting a canula under the skin, after all) and although it’s amazing we have come this far, I still hope for a real and true cure, where Chloe and all the other people living with Type 1 Diabetes can actually live normal lives without constant needles and ‘robot parts’ as well call them.

    In the meantime, we just keep on managing as we have. I won’t deny that I have “diabetes burn out” and it seems like those three days between site changes go by too fast, and where one week we will be battling high blood sugars, the next thing we know it is a week of lows.

    So we hope and pray some day for a real cure- in the meantime, I will never stop being a Type 1 Mom, regardless of how big, mature, and independent my ‘little baby girl’ gets.

  • Nov

    When My Baby was Diagnosed with Type 1 Diabetes

    In November 2008 our daughter Chloe was diagnosed with Type 1 Diabetes at only 18 months old. We were devastated, as our little girl was still only a baby and we were suddenly burdened with a constant, extremely stressful disease to manage in a tiny child. We were faced with up to ten finger pokes a day, constant carb counting and managing what she could eat, and two or three needles of insulin a day. Let’s not forget she was only 18 months old...so it was often difficult to give her needles as, well, needles hurt.

    Also, because she was so tiny, her insulin doses were so small that we constantly battled overnight low blood sugars, or high sugars in the day, as the tiniest bit of leaked insulin, excitement, stress, illness, activity etc can cause huge blood sugar swings. I remember having to wake her up two out of three nights at 3am to get her to eat a snack as her blood sugars had dropped too low from the long acting insulin given at supper. But then, if we didn’t give her any long acting insulin at supper, her sugars would go high over night. At one point I was trying to fudge a quarter of a unit of insulin- the smallest needles you can get still only do doses of .5 units. Let me tell you, .25 units is NOTHING.

    Our life, which had still been adjusting to becoming parents only eighteen months before, was suddenly thrown into constant stress. But it could have been so much worse- Chloe could have easily died. We had no family history or even knowledge about Type 1 Diabetes, and so the warning signs were missed right until the very last moment. Not only by us either- but by doctors as well! I had noticed Chloe was peeing more often and I had to change her diaper quite a bit more, but when I mentioned that to my doctor, she just chalked it up to her growing and teething, and therefore probably drinking more. Jason and I had both noticed a couple months before diagnoses that Chloe had gone from being a super happy baby to just a cranky, holy terror- but again, that just gets written off as being because she’s a baby and is teething.

    The week before we brought Chloe to the emergency room, I had even noticed she had lost a bit of weight- I could see her spine when giving her a bath, which I could never see before as she had always been a chubby baby. I mentioned that to my husband who was staying home with her as I had gone back to work, and he said she hadn’t eaten very much the past week. I was concerned so planned on taking her to the doctor in a week or so if she didn’t gain it back- but she ended up in the emergency department before I could even book one.

    Finally, it was Halloween, and a Friday night, so we took her over to my parents. She was SO cranky and upset, we took her home. That weekend she came down with a head cold- you know, just a snotty nose, cough, mild fever. Nothing serious. She was pretty tired but seemed a bit better on Sunday, so we made sure to keep her hydrated and gave her lots of juice to drink since she wasn’t eating much (and we NEVER usually gave juice, usually she just drank milk or water.)

    The next day I went to work, and my husband called me at 11am saying Chloe had just threw up. We thought she had a stomach bug at this point, so Jason let her rest most of the day. When I came home from work she had just woken up from a nap, so I went to change her- and panicked, as her legs were visibly skinnier than even the day before. I also noticed she was breathing funny- not laboured but just heavy on the out-breath. I learned later that this was because ketones had built up to dangerous levels in her blood and the body will try to get rid of her any way they can, including blowing them out with the breath. (I can smell ketones on someone’s breath now even if they only have a bit, I’ve gotten quite sensitive to them.) I brought her downstairs and made an appointment at the duty doctor- they had an appointment available in only an hour and I thought that would be faster than sitting in the Emergency Department for hours. I talked to my brother, who was a paramedic at the time, and my sister-in-law, who is a hospitalist, and they both felt that would be faster as well. After all, she was drinking lots of fluids, and peeing lots, so that usually means she would be well hydrated. Little did we know.

    We were lucky- the doctor saw us almost right away. He took one look in her mouth and said she was dehydrated, much to our surprise since she had been drinking plenty, and advised us to take her straight to the emergency department. He wasn’t sure what would cause it, and said she might just have an infection. So off to the emergency department we went, and when I mentioned to the nurse at triage that I would like to change her diaper as she had been peeing alot, she looked right at me and said “Can I check her sugar?” Of course I said sure, but I had no idea what it meant.

    Chloe’s blood sugars were off the charts. The meter simply read “High” which meant she was over a 35 blood sugar- a normal blood sugar is around 5.3. The triage nurse didn’t even send us back out the waiting room at that point- nurses came in a back door, got Chloe on a stretcher and hooked up to an IV right away. The next thing we knew, we were at the IWK Children’s Hosital in a strange room, being talked to by a doctor about how Chloe had diabetes, and not to worry- she would be able to have a normal childhood still.

    We stayed in the hospital for four days, as Chloe’s blood sugars were brought down to normal and the doctors and staff taught us how to administer needles, count carbs, and check blood sugars. To say it was a roller coaster ride from hell is an understatement. I remember at one point lying on the bed crying, and the diabetes education coordinator walking in and telling me it would all be okay. One of the questions I had for the doctors were what chances another child would have of getting Type 1 diabetes if we had another baby- I had just had a miscarriage a month before at the end of my first trimester (at around 14-16 weeks) and was still reeling from that loss. She said quite mater of-factly that it would be only 5%. The chances of Chloe having gotten diabetes at only 18 months old? We had better chances of having won the lottery. I guess some people win some, and some people lose.

    That year was really difficult. Going into terrible twos is hard enough as it is, especially with your first child. Luckily I knew someone at work who had a 4 year old that had just been diagnosed with Type 1 Diabetes the year before, and she was a huge help and support to me. She had just recently gotten an insulin pump for her daughter, so we signed up to get Chloe on one as soon as we could- which is usually a year after diagnoses. At age 2 ½ years old, we got Chloe an insulin pump, and a bit of normalcy was restored to our lives.

    That was all ten years ago, but it still makes me tear up to recount it. (Yes I cried writing this.) It’s no easy thing to go through finding out your child has a life threatening disability, and it’s also filled with tons of thoughts of “what if?” It seems like every year after that I would hear about someone who didn’t catch their child’s Type 1 Diabetes in time, and the child passed away. It can often be mistaken for a stomach bug- what if we had followed the rule of “if they’re drinking and peeing, then wait 24 hours?” If we had just put Chloe to bed that night to see if she “slept off” her stomach bug, she most likely would never have woken up.

    But we trusted our instincts that something was wrong and did take her to the hospital, and she is now a thriving pre-teen who loves to draw, dance, and play. She will always be my little trooper now matter how big she is. And I still hope every day that perhaps someday, ideally in my life time (or at least hers) there will be a true, honest to goodness cure.

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