Diabetes affects the whole family, whether you’re a parent, sibling, child, grandchild or spouse. This week on the blog, we’ll be featuring stories about loving and caring for someone with diabetes.
Name: Samantha Pihonak
Location: Stratford, Conn.
I love someone with diabetes! My son Alex is 3 years old. He was diagnosed with autism last May, and we found out on Jan. 20 that he also has type 1 diabetes.
Alex has trouble communicating; he can’t really talk but does have some sign language. He couldn’t tell us that he wasn’t feeling well. Around Thanksgiving he started requesting much more to drink. Then he started to wet his diapers and the bed, quite a lot.
By the time Christmas came, I was bringing whole bottles of juice and water every time we went out, because of how much Alex wanted to drink. We started to get calls from his preschool teachers saying he was having tantrums and wouldn’t calm down until he had something to drink. There were no other signs—but my husband, whose father also had type 1, started to suspect diabetes.
At first Alex’s doctor told us to just stop feeding the behavior, and that nothing was wrong. Then the yeast rash started, and the tantrums became more and more frequent. Alex was regressing in areas he was moving forward in. He was waking up during the night now to get something to drink. Suddenly he started to lose weight, and he wasn’t enjoying anything anymore. He started falling asleep during the day (he’s not a napper) and didn’t want to eat anymore.
My husband and I knew something was terribly wrong, but we couldn’t get a doctor’s appointment for a couple weeks. So we took him in on the night of Jan. 20, just walked in without an appointment. They measured Alex’s blood glucose and it was so high it wouldn’t register on their meters. We were sent straight to Yale Children’s Hospital in New Haven. There we found that Alex’s blood glucose was nearly 800 mg/dL. Thankfully, they were able to get it down safely.
I’ve only been caring for Alex’s diabetes for a few weeks. But I’m a stay-at-home mom, and he is my world. I check his numbers six times a day, including in the middle of the night. Alex is getting used to this new routine. Before he eats, he brings his meter to me and puts out his finger to be tested!
The food part has been hard. Because of his autism, Alex has many tactile issues with food, and he has always gravitated toward high-carb foods. We have to limit how much he eats, and he doesn’t understand that eating too much of these foods can make him not feel well. Our diabetes team at Yale has been wonderful with helping us identify good options. The great thing is that is has opened him up to trying new foods!
I carry his meter, juice boxes, snacks and glucagon wherever we go. I’m sure we will experience more changes as summer approaches, as Alex is a total outdoor beach kid!
As devastating as this has been, Alex is back to his old self and doing wonderfully. He’s regained the 5 pounds he lost, his rash is gone and his attention and focus are back. And we’ve been able to keep his levels right in the target range!
Our wish for Alex’s future is that he be able to do everything any other kid can do. With Alex being diagnosed so young, we hope diabetes will become just part of who he is. We won’t ever hold him back from playing sports or anything he wants to do. As long as he is happy and healthy, that’s all we can ask.
If someone in your family is diagnosed with diabetes, know that no question is stupid. Ask, ask, ask. If you don’t, you will surely kick yourself later. Also take advantage of all the support you can get. Our diabetes team is extremely supportive and we are truly lucky to have such supportive family members as well.
Stay positive and know that you’re not alone!