When Type 1 Diabetes is Too Much for a Child to Bear

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Three years ago, when he was eight, my son Finn* was diagnosed with Type 1 diabetes. It took us a solid year to adjust to the disease’s rigmarole, but with a fantastic school nurse, genius pediatric endocrinologist, loads of support from the diabetes online community, and enough real-life connections to keep us feeling safe, cared for, and connected, I thought we were doing fine. Frankly, I thought we were sort spectacular: make us into action figures and call us The Well-Adjusteds. But then one year ago, at ten, Finn lost interest in everything, even his life’s most-coveted things: a date at the trampoline park, meeting a friend’s puppy, a trip to the Lego store. He told me, I think I’ve lost my zest for life. 

A psychologist diagnosed Finn with depression and referred us to a psychiatrist for medication. And then our dog died. At the same time, Finn’s endocrinologist and a gastroenterologist diagnosed him with celiac disease. Lumped together, this was tremendous misfortune, a lot for anyone to deal with, and Finn was only ten. Under the care of the psychologist, psychiatrist, and gastroenterologist, Finn began taking Prozac and Vitamin D, and stopped eating gluten. Our family adopted a new dog. These changes put the spring back in his step immediately. Meanwhile, he continued seeing his psychologist at least twice a month and his psychiatrist once a month, and never lost his zest for more than a few hours at a time. The gluten free diet, Prozac, and Vitamin D seemed like the perfect solution. Unfortunately, it has not turned out to be a lasting one.

Now, one year later (Finn is eleven), I’ve learned – in the most chilling way – that the primary threat to Finn’s health isn’t Type 1 diabetes or celiac disease. It’s depression.

On a recent Thursday morning, I received a call from Finn’s school psychologist. She said I should come to her office right away.

When I arrived, Finn greeted me with a hug and then remained slumped against me. The psychologist explained that Finn had come into her office saying he was depressed and wanted to die. I thought she must have misunderstood. Why was he in the psychologist’s office? He should have gone to the nurse. I hadn’t even known the school had a psychologist. I thought he probably had low—or high!—blood sugar and just needed glucose—or a glass of water!—to restore him to his normal, cheerful self. Why, he’d left the house just a few hours ago, carrying a pumpkin under his arm, and chatting about the pumpkin painting party his class would be having, and was feeling hopeful: Maybe I’ll get my respiratory system poster back today! I think Mrs. Halpin really liked it!

The psychologist continued to report what Finn had told her as he leaned against me with his face buried against my shoulder. She had asked him, Are you thinking of hurting yourself? (He said yes.) How? (He reported that he wanted to bash his head in with a baseball bat.) How likely are you to do it, on a scale from zero/not really going to, to ten/absolutely certain? (He’d rated the likelihood a seven.)

I was floored. But I was not horrified, because I didn’t believe he could really be thinking any of those things. If he were, why would he turn to a stranger? This was too weird. Finn must have been pretending. Was there a math test he was trying to avoid? Has anyone checked his blood sugar to rule out a loopy hypo?

While I inched toward considering that any small part of what I was being told might be true, a guidance counselor took Finn into an adjacent office while the psychologist explained that she was on hold with the psychiatric hospital’s emergency assessment department, waiting to hear if they could see him immediately. I remember saying Wait. What? And then I cried. She handed me a tissue. I dried my eyes. I dried them carefully, like a heavily made-up pageant contestant, so I could pretend I hadn’t been crying when Finn came back into the room. When Finn was diagnosed with diabetes, I’d done the same routine: disbelief, sudden tears, brief hyperventilation, pageant eye-dab, competent adult mode.

From there, on the advice of the school psychologist, Finn’s psychologist, and Finn’s psychiatrist, we headed to the psychiatric hospital. I remember asking the school psychologist if we shouldn’t first go home for something to read, or my knitting, or to pack a snack. She said she would definitely not recommend that. Looking back, I can see it must have seemed pretty macabre to her that I was concerned with getting bored or peckish while my son’s suicide risk was being evaluated.

In the hospital admissions department, a social worker interviewed Finn and me. For me, it was love at first sight. She had great eyeglass frames, messy Katharine Hepburn hair, and pushed the sleeves of her striped sweater up over her elbows, revealing skinny arms and unapologetic age spots. She glowed with competence. Finn was comfortable with her too, and thoughtfully considered her questions.

Over the course of an hour or so, I learned how miserable Finn has been. He hates having diabetes. He doesn’t want to do it anymore. He hates having celiac disease. At school or at parties he can’t eat the same food as everyone else. He’s tired of being different. This information didn’t gush out, as if he were relieved someone had popped the cork on his bottled-up sadness. Instead, with each question, his posture became more and more deflated.

Further and further he slumped as he answered with shrugs, uh-huhs, and nods, until he had slid right off of his chair and curled into a ball on the floor. This ball eventually worked its way under a desk and pulled the neck of its shirt over its head and refused to answer more questions.

“Kid,” the social worker said, “you have had a tough run of luck. With the diabetes, and the celiac, and I know your dog died, and the depression…it’s worse for you now, and I know this doesn’t help, but you’ll be way ahead of the game when you’re an adult. You’ll be a crackerjack friend and problem solver.” I thought that was such a nice point for the social worker to make. Unfurled from his ball, Finn hugged his knees and stared at the floor.

Her next point was less nice: he’s suicidal.

I’m sure her analysis would have been a shock no matter what, but Finn has always been so sanguine about Type 1 diabetes and celiac. I’ve been waiting for the suckage to dawn on him. I think Udi’s is better than regular bread, he’ll say, or I’m glad I have diabetes because I still get to have a snack, even though there’s no snack time in middle school. Entering the hospital on October 30th, he told his dad and me It’s okay that I’ll miss Halloween. I’ve only been looking forward to it a little bit. These kinds of assertions strike me as outlandishly naïve; at the same time I can’t help but admire his aplomb.

After the interview, we were told Finn would be admitted to the hospital as soon as they could figure out how to manage his diabetes. Finn uses an insulin pump, and this caused a hubbub. After all, leaving a lethal dose of insulin in the pocket of a suicidal child is not an option. But what to do?

It soon became apparent that the nurse lining up Finn’s diabetes care was placing calls in an effort to locate a specialist who might know how to disconnect an insulin pump. I explained that it’s easy to remove, and that Finn takes it off to shower or swim, that it’s just a simple clip. The nurse said, “But who will remove the port?” I explained that we could just pull it out, that it wasn’t really a port—just a tiny needle. The nurse thought I should remove it right away, for safety. I thought we should wait until we were sure Lantus was available.

Next the nurse explained that, because of the strict calorie count the dietary department would provide for Finn’s diabetic meals, he wouldn’t need Lantus. I said I didn’t think we were talking about the same thing, and that Finn’s diabetes care didn’t involve calorie counts. With visible exertion of his patience muscles, the nurse paged the pediatrician on call and asked me to speak to her.

PEDIATRICIAN: What is it you think your son needs?

ME: He has Type 1 diabetes and uses an insulin pump. I understand why he can’t have it in the hospital, but I can’t disconnect it until I know he’ll have access to Lantus.

PEDIATRICIAN: Oh, is he very brittle?

ME: Brittle?

PEDIATRICIAN: Blood sugar goes up and down?

ME: He has Type 1 diabetes.

PEDIATRICIAN: In a hospital, all diabetic meals are very carefully controlled. The dietician will make sure he gets the right amount of food at each meal.

ME: I really don’t think that’s going to matter. He definitely needs basal insulin, and once we disconnect the pump and remove the site, there won’t be any.

PEDIATRICIAN: Why don’t you describe for me what it is you think he needs?

ME: Well, pretty much as soon as we disconnect, he’ll need Lantus to replace the basal insulin he won’t be getting from the pump. And then whenever he eats carbs or if he’s high, he’ll need Humalog.

PEDIATRICIAN: Oh, do you mean like a sliding scale?

A new layer of fear draped itself over me. Every trusted expert was in agreement: Finn needed to be in the psychiatric hospital. This hospital was the place he could be kept safe from anything he might use to try to kill himself, while having daily access to a psychiatrist and all kinds of intensive psychotherapy. This was his best chance to stop feeling suicidal as quickly as possible. But what if—in the most nauseatingly ironic twist that has ever crossed my mind—this hospital’s version of diabetes care killed him? I have been so used to seeing diabetes as the #1 threat to Finn’s health that it was hard to believe this could be a safe place for him.

After several conversations about diabetes management that went nowhere and confused everyone, Finn’s endocrinologist faxed over a plan. Lantus every night at bedtime. Humalog for carbs and for blood glucose over 200 mg/dL. Check blood sugar before each meal, at bedtime, at 2:00AM, and whenever Finn feels low. I was grateful that his endo stepped in, but wondered if her intentionally rudimentary orders would be enough to keep him not only safe, but also feeling well. Coming from the Dexcom House of Microtuned Insulin Pumping, it sounded to me like he’d be high all of the time, and wouldn’t that keep him from feeling better?

Now that Finn has had a few days on this regimen, I admit that the blunt tools of the endocrinologist’s orders are working as planned. His blood sugar has been kept high, but fairly steady, usually in the 150 – 250 mg/dL range. At home, I’d consider this a C- or D+. However, without a Dexcom revealing every post-meal spike, it seems more like a B. When I arrived for a visit on his third day, a nurse told me Finn was low, but she hadn’t given him juice because she knew I was about to arrive with lunch. At first I was worried, but all was well. By “low” she meant 138 mg/dL.

On the same hospital wing where Finn has been and will be for the next few (many?) days (weeks?) are about twenty other kids suffering from assorted psychiatric illnesses. Most of these appear to manifest themselves in screaming, kicking, refusing to move, or obesity.

On a publicly displayed chart, the kids’ first names, cryptic abbreviations for their psychiatric illnesses, and other medical issues are listed. A quick scan reveals that several kids share Finn’ psychiatric codes, but that Finn is the only patient with diabetes or celiac. For most of the kids, the OTHER column is blank. Exceptions: one child’s “other” issue is “brush out hair every other day.” Another’s is “shrimp allergy.” Pffft. That’s nothing! I think. Then I remember it’s not a contest. Then I remember if it were a contest, Finn would lose.

Emotionally, I’m still on autopilot. At the same time, the hospital gives me a visceral case of the willies. I can’t believe this is happening. Staff members wear forearm guards for protection from bites. Who are these children? Perhaps the most frightening one is a little girl with a big voice who, on the evening of Finn’s admission, hollered about baby lotion for four straight hours. (Baby lotion. Hello? I SAID I need my BABY lotion. BABY LOTION! Hel-lo. Lights on? Nobody home? I need my BAY. BE. LOW. SHIN.)

On arrival, I didn’t believe these children could seriously be Finn’s cohort. I asked a staff member if he could move to a quieter room, or at least a room not adjacent to the baby lotion girl. Gently, each time I tried to gain access to an elite, secret wing for politely depressed children, a staff member explained to me that there is no quiet section. That all of these children are suffering. That most of them act out, but some act in. Finn is acting in.

One of the few items he is allowed to keep in his room (no toys, no sheets, no shoelaces) is a file labeled My Therapy Folder. It is blue with a rainbow label. Inside are loose-leaf worksheets. Their titles make my stomach flip: What Makes Me Want to Hurt Myself. Things I Can Do Instead of Hurting Myself. What Happened to Me Right Before I Wanted to Hurt Myself. Every sheet is blank except for All About Me:

My favorite animal is narwhal. My favorite food is red velvet cake. My favorite tv show is none. Why are you here? Severe depression suicidal thoughts. If you could be anyone, who would you be? Myself. What are two things you would like to change about yourself? Nothing. What makes you sad? I am not sad I am happy.

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22 Comments on "When Type 1 Diabetes is Too Much for a Child to Bear"

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Anon

Thank you for sharing this story. I am 29 with Type 1 since I was 10. I cried reading this – I wish someone had recognized this in me at a young age. I am lucky to still be here. your son is so lucky to have you. Best of wishes.

Craig

Such a heartbreaking story! But so glad you were able to catch things before tragedy struck. I can’t even imagine watching one of my kids go through all of that. Positive thoughts headed your way and I hope things get better.

Kenny Wusstig

As a T-2 Diabetic this is the saddest story I’ve ever read. For me when I was diagnosed back in 2011 at age 20 I felt the same way. Sad, confused, angry and depressed. Especially since I couldn’t join the military. But in the future we diabetics just have to learn to live life one day at a time. And try to make the best of it no matter what.

Catrina Latuszek
This broke my heart and I’ve been there before. I didn’t have the kind of system that you do, and I spent a lot of time suffering in silence – and when I talked, I was called selfish and told to snap out of it. I spent a couple weeks in the school psychologist’s office at the urging of my guidance counselor while I got called a liar by my parents. Bless you for your help and understanding. Now that I am older, I understand now that my mother was only scared half out of her mind and in denial,… Read more »
Angela
Thank you so much for sharing. Please let your son know that he is not alone!! That there are a whole lot of us with Type 1 diabetes who deal with depression also. That it comes with the territory and it’s ok to need help. After 32 years of living with both, I strongly believe a therapist should automatically be a part of the diabetes team. Also a diabetes support group or camp with children of similar age as this helps provide a setting where diabetes is “normal.” Wishing you all the best!! (And it is so very hard to… Read more »
Sarah

This broke my heart. Diabetes is so draining… it just seems to take, and take, and take sometimes. I hope you and Finn* find lighter days very soon.

Kate
My son was diagnosed with type 1 diabetes 12 years ago this month, he was just shy of his 5th birthday. He spent Christmas in the hospital, I asked the doctor if we could just wait until after the holiday to go to the hospital, he looked at me like I was beyond stupid and explained that we wouldn’t need the hospital if we waited, we’d be planning his funeral (his blood sugar was over 1000). He has battled depression since he was 10 and like Finn he’s a master at managing his diabetes when he’s feeling ok. He’s been… Read more »
Shannon Armstrong
I am so sad to read the story I a have a similar one and feel that it is a hidden secret that needs to be told. I unfortuantly do not have the time at the moment to write our story. However it involves my daughter and a very similar story. My hear aches for both our families and our children. I would love to reach out to you. This is an important issue that needs to be discussed. My daughter also has celiac as well as type 1. She is 16. She also had to go to the hopsital… Read more »

I feel so much better with our story published and your comments have made me feel so, so much better even beyond the initial feeling better. Thank you so much for your loving care.

Finn is now living at home, attends school, has fun with friends, but there’s this constant awareness (for me at least) that when we ask him how he’s doing we mean a whole bunch of things more than happy/sad, hungry/tired, or whatever people mean when they ask how you’re doing.

Thank you so much for your support. I feel completely buoyed by you.

Julie
Thanks for writing and posting this. As I think back about my own life with T1 and those of my friends with T1 depression is the most common thread. I think we all put on a brave face, deal with it, and move forward in life. All while fighting this never ending truth, it won’t ever end and it’s exhausting. Part of the problem for Type 1 as a whole is that diabetes is unlike any other chronic disease and is the only self managed disease where life and death is so finely balanced by the patient. We set out… Read more »
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