{"id":37241,"date":"2014-12-02T07:47:02","date_gmt":"2014-12-02T12:47:02","guid":{"rendered":"http:\/\/asweetlife.org\/?post_type=feature&p=37241"},"modified":"2016-01-11T06:50:18","modified_gmt":"2016-01-11T11:50:18","slug":"when-type-1-diabetes-is-too-much-for-a-child-to-bear","status":"publish","type":"post","link":"https:\/\/asweetlife.org\/?p=37241","title":{"rendered":"When Type 1 Diabetes is Too Much for a Child to Bear"},"content":{"rendered":"

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\u2019s 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\u2019s most-coveted things: a date at the trampoline park, meeting a friend\u2019s puppy, a trip to the Lego store. He told me, I think I\u2019ve lost my zest for life.<\/em>\u00a0<\/em><\/p>\n

A psychologist diagnosed Finn with depression and referred us to a psychiatrist for medication. And then our dog died. At the same time, Finn\u2019s 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<\/em> 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.<\/p>\n

Now, <\/strong>one year later (Finn is eleven), I\u2019ve learned \u2013 in the most chilling way \u2013 that the primary threat to Finn\u2019s health isn\u2019t Type 1 diabetes or celiac disease. It\u2019s depression.<\/p>\n

On a recent Thursday morning, I received a call from Finn\u2019s school psychologist. She said I should come to her office right away.<\/p>\n

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\u2019s office? He should have gone to the nurse. I hadn\u2019t even known the school had<\/em> a psychologist. I thought he probably had low\u2014or high!\u2014blood sugar and just needed glucose\u2014or a glass of water!\u2014to restore him to his normal, cheerful self. Why, he\u2019d 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\u2019ll get my respiratory system poster back today! I think Mrs. Halpin really liked it!<\/em><\/p>\n

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?<\/em> (He said yes.) How?<\/em> (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?<\/em> (He\u2019d rated the likelihood a seven.)<\/p>\n

I was floored. But I was not horrified, because I didn\u2019t 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?<\/p>\n

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\u2019s emergency assessment department, waiting to hear if they could see him immediately. I remember saying Wait. What?<\/em> 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\u2019t been crying when Finn came back into the room. When Finn was diagnosed with diabetes, I\u2019d done the same routine: disbelief, sudden tears, brief hyperventilation, pageant eye-dab, competent adult mode.<\/p>\n

From there, on the advice of the school psychologist, Finn\u2019s psychologist, and Finn\u2019s psychiatrist, we headed to the psychiatric hospital. I remember asking the school psychologist if we shouldn\u2019t 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\u2019s suicide risk was being evaluated.<\/p>\n

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.<\/p>\n

Over the course of an hour or so, I learned how miserable Finn has been. He hates having diabetes. He doesn\u2019t want to do it anymore. He hates having celiac disease. At school or at parties he can\u2019t eat the same food as everyone else. He\u2019s tired of being different. This information didn\u2019t 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.<\/p>\n

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.<\/p>\n

\u201cKid,\u201d the social worker said, \u201cyou have had a tough run of luck. With the diabetes, and the celiac, and I know your dog died, and the depression\u2026it\u2019s worse for you now, and I know this doesn\u2019t help, but you\u2019ll be way ahead of the game when you\u2019re an adult. You\u2019ll be a crackerjack friend and problem solver.\u201d <\/em>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.<\/p>\n

Her next point was less nice: he\u2019s suicidal.<\/p>\n

I\u2019m 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\u2019ve been waiting for the suckage to dawn on him. I think Udi\u2019s is <\/em>better than regular bread<\/em>, he\u2019ll say, or I\u2019m glad I have diabetes because I still get to have a snack, even though there\u2019s no snack time in middle school.<\/em> Entering the hospital on October 30th<\/sup>, he told his dad and me It\u2019s okay that I\u2019ll miss Halloween. I\u2019ve only been looking forward to it a little bit.<\/em> These kinds of assertions strike me as outlandishly na\u00efve; at the same time I can\u2019t help but admire his aplomb.<\/p>\n

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?<\/p>\n

It soon became apparent that the nurse lining up Finn\u2019s 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\u2019s easy to remove, and that Finn takes it off to shower or swim, that it\u2019s just a simple clip. The nurse said, \u201cBut who will remove the port?\u201d I explained that we could just pull it out, that it wasn\u2019t really a port\u2014just 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.<\/p>\n

Next the nurse explained that, because of the strict calorie count the dietary department would provide for Finn\u2019s diabetic meals, he wouldn\u2019t need Lantus. I said I didn\u2019t think we were talking about the same thing, and that Finn\u2019s diabetes care didn\u2019t involve calorie counts. With visible exertion of his patience muscles, the nurse paged the pediatrician on call and asked me to speak to her.<\/p>\n

PEDIATRICIAN: What is it you think your son needs?<\/p>\n

ME: He has Type 1 diabetes and uses an insulin pump. I understand why he can\u2019t have it in the hospital, but I can\u2019t disconnect it until I know he\u2019ll have access to Lantus.<\/p>\n

PEDIATRICIAN: Oh, is he very brittle?<\/p>\n

ME: Brittle?<\/p>\n

PEDIATRICIAN: Blood sugar goes up and down?<\/p>\n

ME: He has Type 1 diabetes.<\/p>\n

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.<\/p>\n

ME: I really don\u2019t think that\u2019s going to matter. He definitely needs basal insulin, and once we disconnect the pump and remove the site, there won\u2019t be any.<\/p>\n

PEDIATRICIAN: Why don\u2019t you describe for me what it is you think he needs?<\/p>\n

ME: Well, pretty much as soon as we disconnect, he\u2019ll need Lantus to replace the basal insulin he won\u2019t be getting from the pump. And then whenever he eats carbs or if he\u2019s high, he\u2019ll need Humalog.<\/p>\n

PEDIATRICIAN: Oh, do you mean like a sliding scale?<\/p>\n

A new layer of fear draped itself over me. Every trusted expert was in agreement: Finn needed to be in the psychiatric hospital. This<\/em> hospital was the place<\/em> 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<\/em> chance to stop feeling suicidal as quickly as possible. But what if\u2014in the most nauseatingly ironic twist that has ever crossed my mind\u2014this hospital\u2019s version of diabetes care killed him? I have been so used to seeing diabetes as the #1 threat to Finn\u2019s health that it was hard to believe this could be a safe place for him.<\/p>\n

After several conversations about diabetes management that went nowhere and confused everyone, Finn\u2019s 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\u2019d be high all of the time, and wouldn\u2019t that keep him from feeling better?<\/p>\n

Now that Finn has had a few days on this regimen, I admit that the blunt tools of the endocrinologist\u2019s orders are working as planned. His blood sugar has been kept high, but fairly steady, usually in the 150 \u2013 250 mg\/dL range. At home, I\u2019d 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\u2019t given him juice because she knew I was about to arrive with lunch. At first I was worried, but all was well. By \u201clow\u201d she meant 138 mg\/dL.<\/p>\n

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.<\/p>\n

On a publicly displayed chart, the kids\u2019 first names, cryptic abbreviations for their psychiatric illnesses, and other medical issues are listed. A quick scan reveals that several kids share Finn\u2019 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\u2019s \u201cother\u201d issue is \u201cbrush out hair every other day.\u201d Another\u2019s is \u201cshrimp allergy.\u201d Pffft. That\u2019s nothing!<\/em> I think. Then I remember it\u2019s not a contest. Then I remember if it were a contest, Finn would lose.<\/p>\n

Emotionally, I\u2019m still on autopilot. At the same time, the hospital gives me a visceral case of the willies. I can\u2019t believe this is happening. Staff members wear forearm guards for protection from bites. Who are<\/em> these children? Perhaps the most frightening one is a little girl with a big voice who, on the evening of Finn\u2019s 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.<\/em>)<\/p>\n

On arrival, I didn\u2019t believe these children could seriously be Finn\u2019s 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<\/em>. Finn is acting in<\/em>.<\/p>\n

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<\/em>. 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:<\/p>\n

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

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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\u2019d rated the likelihood a seven.) I was floored. 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