Today marks 6 months since my son went into DKA (Diabetic Ketoacidosis) and we found out he had Type 1 Diabetes. 6 months since he was in the Emergency Room at Cohen’s Children’s Hospital and spent two days in the Pediatric ICU (PICU). 6 Months since we found out he was going to be insulin dependent for the rest of his life. 6 months since we were introduced to the words – checking his blood sugar, giving insulin injections, sharps, bolus, etc. words that weren’t familiar to us before. 6 month since we had to change everything we knew about feeding our kid and make sure we counted the carbs first. 6 months since we learned about fast-acting and long-acting insulin. We really had no clue that the time in the hospital, even that was so scary, was not the only time we would feel like that. The last 6 months have been a roller coaster.
6 Months Since My Son Was Diagnosed with Type 1 Diabetes
We’ve dealt with low blood sugars and high blood sugars and frankly, we never know what’s going to lead to either one. I spent many a night on the phone with the endocrinologist on night duty, trying to figure out how to bring up or bring down a blood sugar level. Nothing makes sense with Type 1 Diabetes, a certain meal may be fine and then I’ll serve the very same meal a day or a week later and his blood sugar will react differently. Things may be different because he got a lot of exercise in a day or if he was sedentary.
For several months up to a few years, a child can be in “the honeymoon” period, when they don’t need a lot of insulin. We got out of the honeymoon period in late December, as Christmas started and no matter what we did, my son’s blood sugar was consistently over 300. The reason why we were out of the the honeymoon because puberty started (confirmed around 2 weeks after the holidays).
Things did get better in mid-January when we finally got on an insulin pump. We have the Omnipod and it’s wireless. While it’s not all sunshine and roses, the pump has really made things so much better. While I still give my son low carb and no carb snacks, he can have anything he wants, as long as he puts the carb count into his PDM (personal diabetes manager). The bad part? He’s not ready to do this 100% on his own. His pump sometimes malfunctions because he may have used up all his insulin or for another reason. He has marks all over his body from needle prickings. He has remnants of adhesive all over his body from the tape we use to keep his devices on. And for the last two weeks, he won’t even wear his blood sugar monitor, so I have NO CLUE what his sugar levels are. I try to make him check every 2 hours when he’s up and with the family — but it’s YET another thing to remember.
We’ve had to learn how to monitor him and 6 months since I got a really good night’s rest. But it’s not all bad. He’s gained 20 lbs and gotten taller. While it will never be “better”, we have learned how to “manage” as best that we can. Somedays, we don’t manage well. Sometimes we do.
I am on alert always and always trying to make sure he’s okay. But I’m tired. However, this is my son’s fight and it’s not about me. He’s 12 and on that cusp of becoming a teen – and he’ll be a teen with a lot on his shoulders. I can’t even think about what summer camp and middle school next year will look like. He’ll have some kind of a commute for middle school – most likely at least one subway stop away, I’m not even sure how I will manage this and still pick up my other two kids. I can’t even look to the distant future of high school and college — will he have roommates in college that will check on him and make sure he’s not too high or low? What about when he’s out of college and working? And when he starts a family… it is a long way off, but I still worry. I worry about everything now.
If you are a mom or dad of a newly diagnosed child with Type 1 Diabetes, please feel free to email me. I promise I will respond and try to help you. I am not a doctor or nurse, just a parent that has gone through this and I will help you or point you in a better direction.
One of my favorite groups on Facebook is the T1D Mod Squad (great for moms and dads of Type 1 Diabetes – this is a non-profit organization).
Unfortunately, Type 1 Diabetes can come on pretty suddenly (we had 4 days of major red flag symptoms and I didn’t put the signs together). We’re still in flu season, so if you suspect that your child may have the flu, but they are also peeing a lot, drinking a lot of liquids AND possibly vomiting, ask your doctor to test your child’s blood sugar. It will take a second and then you can hopefully rule out Type 1 Diabetes.
Early Symptoms of Type 1 diabetes
- weight loss (despite an increased appetite)
- unquenchable thirst
- blurry vision
- decreased energy level
- frequent urination
- a fruity smell to the breath
- in children with no previous issues, wetting the bed
- in babies and toddlers, heavy diapers
More Advanced Symptoms
- stomach pain
- fatigue or weakness
- nausea or vomiting
- rapid, heavy breathing
- loss of consciousness
Note: I am not a doctor or have medical training. I talk about Type 1 Diabetes from a parent’s point of view. Always consult your endocrinology team if you have any questions. I advocate for my child until he can advocate for himself.
Read Ben’s Diagnosis Story: