Friday, August 27, 2010

The Boss

Even before entering his room, I could hear my next patient yelling as I stood in the hallway. "No," he screamed. I heard a woman's voice murmur back. "I don't care. I won't eat it." The woman's voice, again, said something that I couldn't understand. "I hate it!" the patient screamed again. "You can't make me!"

Before taking that first big leap into the unknown, I knocked on the frame of the door. I entered. And there, sitting Indian-style on the cot, his arms crossed, with a big pout resting across his face, sat my next patient. A five y.o. little boy, chunky and sulky, in a huff, refusing to eat the spoon of vanilla pudding his mother was holding to his lips.

The nurse, apparently on her knees wiping up a glass of spilled orange juice, looked back at me. Her rolling eyes told me all I needed to know about this room.

The mother put down the spoon as I approached her with my hand extended. "Hello, maam," I said, "I'm Dr. Jim. I'll be working with Nurse Michelle to take care of your son today." She smiled as we shook hands. I then turned my attention to the patient. "Hello, Scottie," I greeted him, "how are you? It looks like you don't like vanilla pudding, huh? Me either." A blatant fib on my part, all for the sake of bonding.

Scottie stared me down, giving me his best angry look. I held my hand out to him to shake, but all he did was turn his attention from my face to my hand, probably willing it to explode. "No!" he exclaimed, either in answer to my question about vanilla pudding or in refusal to shake my hand. Either way, I hadn't made a friend.

I focused my attention back on Mom, who had since taken a corner seat to rest. "Maam," I said, "what happened that brought you here to our emergency department with Scottie?"

Mom explained that Scottie had been diagnosed with juvenile diabetes just a few short months ago. Since this diagnosis, they have been struggling to find the right balance between his medications and diet. Unfortunately, Scottie has also been acting out. He typically got three shots of insulin a day, prior to meal time. And on multiple occasions, after receiving his shot, he refused to eat the food placed in front of him, instead demanding a McDonald's Happy Meal. Of which the family, in exasperation, eventually allowed. "Thank goodness we live near a McDonalds," Mom said, as if this was the answer.

It seemed that Scottie was the boss. King of the house. Ruler of the roost.

Tonight, after receiving his dinner dose of insulin, Scottie again refused to eat supper. "I want a cheeseburger!" he had exclaimed, per Mom. And then, before they could run and get Scottie his demands, Scottie went unconscious. Paramedics were called and rushed to the house to find Scottie's blood sugar low--45. They squeezed oral glucose packets into his mouth while attempting to start an IV, and soon Scottie was back with a finger stick of 115. They transported him to our facility.

"Scottie," I asked him, "you don't want to get rushed here to the emergency room again, do you?" He nodded his head "no." "Then you need to eat what Mom gives you after your insulin shot. Do you understand?"

He stared me down. I stared him down. And he stared me down some more, before finally yelling, "I want a cheeseburger!" Supposedly, his aunt and cousin were heading on in with a Happy Meal soon.

Nurse Michelle, in her best attempts, had ordered Scottie a tray. When it arrived, I went back into his room to see how he was doing. No Auntie with the Happy Meal yet, but his tray was one of the best collections of hospital food I have ever seen. Chicken noodle soup, cake, apple juice, french fries, a peanut-butter and jelly sandwich, soda, peaches, potato chips, and chicken tenders. There were no dietary discretions as we struggled to keep his glucose level up.

Unfortunately, there was no cheeseburger. "The grill is down," Michelle explained, shrugging her shoulders.

Guess how much of this delicious tray Scottie ate? Not one bite. Not one drink. Out of defiance, I'm sure. Despite our coaxing attempts, this kid appeared to call the shots. And it was obvious we weren't going to change his behavior in this one ER visit. I eyed up those chicken tenders, though, sitting on a plate under a lid, and said a silent prayer that they would still be on the tray after Scottie was discharged. Michelle, it seemed by her intensely focused eyes, was claiming the fries.

We repeated Scottie's finger stick as he continued pouting, sitting on his bed Indian-style, and were surprised to find it only at 50. "Here," Michelle said, cutting open several packets of liquid glucose, "you need to take all of these, Scottie, or else I'll have to poke you for an IV." Miraculously, Scottie devoured all three packets. "Mmmm," he said, smacking his lips and wiping his face with his shirt-sleeve.

Great, now the kid was getting hooked on glucose packets instead of real sustenance.

As we repeated his finger stick (98), his aunt and cousin walked into the room with the McDonald's Happy Meal. With that familiar greasy smell trailing them. Scottie jumped from the cot, barely able to contain himself, stepping up to his aunt and snatching the meal from her hands. No "thank you." No smile. No gratitude. He just turned back to his cot and ripped open the box of food, unwrapping the burger and finishing it in just minutes. After that, the fries. And finally, he slurped his Coke until the glass was gone.

He was good to go.

Before discharge, I pulled Mom out into the hallway. "Mom," I said, "his disease is lifelong and serious. You need to take the control from Scottie and gain it back. It appears he is calling all the shots right now."

She nodded in agreement. "I know, I know," she said, "my friends and family say the exact same thing. It's just..." Here, she broke down a little before finally continuing. "It's just that it's not fair that he had to get this diabetes crap, you know?" Now I nodded my agreement, thinking back to having those familiar feelings when my son was diagnosed with his malignancy.

"I know," I said, "it seems so unfair when a child gets a serious illness like this. But you need to show him, by example, that this is conquerable if he follows the rules. Eating a McDonald's Happy Meal isn't following the rules. Letting him make demands and granting them isn't following the rules."

She agreed again, and assured me that she would try harder in her discipline. She also promised me that she would keep the morning appointment we made for Scottie with his endocrinologist.

I wished her luck. She was the mother of a child recently diagnosed with a long-term illness. She deserved a break and some time to figure things out on her own schedule. I hoped she could see, though, that her actions would significantly affect how well her son would respond to his situation.

I hoped, too, that someday again, she would be the boss.

As always, big thanks for reading. I hope you have a great weekend...

27 comments:

Outrider said...

Several years ago, the 6-year-old daughter of clients was diagnosed with diabetes. Unlike the child you described, she responded with remarkable maturity and is now doing well on an insulin pump. She participates in managing her disease as much as she can and I'm very impressed with her (we've had a few discussions about diabetes in non-human species). Of course, her entire family changed its eating habits in an effort to support her, and her parents have always run the show at their house.

Leslie said...

I hope this does not sound unduly harsh (forgive me if it does, Jim) but you said the boy was chunky...and he was only diagnosed a few months ago. I surmise he has been running the show since long before the diagnosis.

Here's hoping his illness will be a catalyst for the parents to learn how to regain control...which will be a blessing all around.

Tracy2 said...

Wow, I wonder what you do in that case. You can't force feed a kid - and he seems to have figured out the perfect method to get his way.

A non-diabetic kid, you could just refuse the McD's and figure they'll eat when they get hungry enough. But a diabetic kid...

R.May said...

I thought the same thing Tracy...

I can't imagine! So many kids go through the refusal to eat phase. My solution was of course you get nothing until you eat your dinner, which if not eaten is offered again for breakfast, lunch, dinner again, etc. And I only had to do that once. But what do you do when the child will die without eating?

Don't know, maybe the iv would have been better - if not eating what is offered results in a slightly painful stick....

And myabe a referral to a nutritionist specializing in diabetes....

Gen said...

I agree with R.May about the IV stick. The kid seemed to listen up when an IV was threatened.

Sounds barbaric to threaten children with an IV if they don't comply, but the reality is that a heck of lot more than an IV is in his future if he doesn't get with the program.

I think they could benefit from some counseling. I'm sure there are other families out there dealing with the exact same thing. She needs some support.

leslie said...

There is a fairly obvious way for the mother to regain control: don't give the insulin until after the meal. They will have to give a little less insulin, and the control won't be quite as good, but it would sure be better than it is with all the games he is playing now.

Amy said...

Wow, that sounds like a really tough problem. Mom should never have let him rule the roost in the first place, but now he's got her over a barrel--if he refuses to eat and she doesn't get him the Happy Meal, he could suffer serious medical consequences. There's no way she can allow this to continue, so she's got to find a way to outsmart him.

Anonymous said...

I have been type 1 since i was 6 and my twin as well and now my neice and we all did this my mom was great though she did not let us run the show. we received our shots after our meals and neither of us have bad A1C's now we are on pumps and my neice who was dx'ed 6 months ago is on the pump and we bolus after meals to ensure correct carb coverage. this mom bless her heart has got to find something that works because the alternetive is not good.

Chrysalis Angel said...

I hope she listens to you.

Cal said...

It is hard for everyone involved to deal with a serious chronic condition. The kid rebels, the mother feel bad for her son. It is not in the best interest of the kid to live off Happy Meals, but I can see how it happened. Hopefully they can sort it out soon enough.

Katie said...

Yuck. Stories like this make me crabby. I pray I am never this kind of mother. Although, I can see how it happened.

I'm a picky eater, and I remember a fight with my father in the upstairs bathroom (how we got from the kitchen, up the stairs, and into the bathroom I may never know) involving a piece of cheese I declared pink and refused to eat no matter how long I sat at the table. But that's about as bad as our food defiance ever became. Well, until our dog refused to eat this summer. She might never eat dog food again. It's all boiled hamburger for the rest of her life (yucky).

Have a good weekend,
<>< Katie

emmy said...

In response to seeming barbaric to stick a child because he won't eat. My grandson is a hemophiliac and we all have learned to set up the IV. It can be done. Realistically though, I was reading this and trying to figure out how I'd rangle control from this child. I think this mother needs Super Nanny or something.

Heather said...

you know, in the big scheme of things... (I could be totally off base, and you can tell me so later!)...

The kid is newly diagnosed. Kids don't deal well with medical crises anyway. Especially little ones who need to take shots three times a day. The kid knows he has no control and is exerting control over the one thing that he can: food. It will get better. He is too little to understand abstract thought anyway. A little reward chart with stickers, and Mom is good to go. No more Happy Meals. (She needs to hang out with some other moms who have chronic kids too!) ;)

Tonjia said...

I think it sounds like Scottie has been the boss for a long time..

sorry Doc, but he would have had an IV on arrival to our ER. desperate times call for desperate measures. ;-)

ER Murse said...

I'd think they could check his sugar, wait until he eats, then give him his insulin. Gives the parents a chance to count carbs too, and adjust the insulin dose if needed. Can't go on letting the kid live on cheeseburgers, and calling the shots with temper tantrums.

Moose said...

ER Murse beat me to the punch. I'm sure as the parents of a newly diagnosed child they're still in the rut of doing things by what seems to be the "right way", but there's no reason he has to have a shot before eating.

Today's modern insulins [humalog/novolog] start working within 15 minutes, so there's no longer an absolute requirement to take it before eating. The older R (regular) insulin doesn't start working for at least a half an hour [usually closer to an hour].

Hopefully the endo is smart enough to encourage the parents to do just this. That way if the kid starts going on hunger strikes because he's not getting his favorite junk food he won't fall over from hypoglycemia.

Tracy2 said...

Like others have said, my pediatrician friend said no insulin until after he eats.

And lots of blood sugar checks until he eats too - practical, and maybe not so fun.

He certainly sounds like a brat - but poor kid too, juvenile diabetes (well any diabetes really) certainly does not sound fun.

Empress Bee (of the High Sea) said...

hi doc, we are back from the wonderful cruise and i am catching up on my reads while the washer washes and the dryer dries. ha ha

this child sounds so unhappy and it seems to me he is acting out for attention, not for the certain food. i certainly could be wrong but i think i'd try a different route. like putting dinner in front of him before the shot like others have said. he'll get hungry. lots of attention during good behavior and not much for the bad.

just my 2 cents though.

smiles, bee
xoxoxoxoxoxoox

Anna said...

Jim another touching story. As much as we sometimes feel sad for sick children, its true we are not doing them any favor letting them control everything. Thanks for the good lesson and reminder, as I do those things even with a healthy child. Thanks again, and hope all is well. Anna :)

Winking Doll said...

Hi doc,

I agree with the observations of some above that the kid already had control over his mother way before the diagnosis.

From my observations at an acute paeds ward, kids who behave like that already do so at home. It is unlikely to change over the duration of their stay in the hospital. Usually in such situations, parents, grandparents, maids, and other caregivers, look to the nurse to take control of the kid. That is, the nurse has to be the bad guy. Some parents even use the nurses to threaten the child if they don't behave.

In the hypoglycaemic case, the child would have been put on IV stat at my previous workplace. Both arms will be splint to prevent him from pulling out the IV. And the child will be told that we will poke him again if he does so. At acute situations, managing his survival is our priority.

Thankfully, the majority of the children are still well behaved, if not under their parents, then at least under their alternative caregivers. I have seen "weekend" parents who has zero control over their child but the child obeys their alternative caregiver.

That said, I was a tantrum throwing kid who refused food intake too. My mother used to bribe me with additional pocket money because I was significantly underweight/under-height while growing up. IMHO, the power dynamics didn't changed much over the years. Thus, IMHO, it's going to be a long and hard road for the mother in your story.

One option may be for the mother to temporary let a firmer relative take over the daily care of her child. The power dynamics is not as yet established with the alternative care-giver. Coupled with frequent blood sugar tests pre-meals and post-meal insulin jabs, the 6 year old would soon realise that the faster he complies with food intake, the fewer pokes he gets at each meal. That may change his behaviour over time.

med464 said...

I have been type 1 for over 16 yrs and my parents always dosed my insulin after a meal to ensure I would get the correct dose for the food and BG number. My never tod me I could not have something she just made sure that when I did have something that could possibly mess with my BG it was in moderation. It breaks my heart to see little ones having to deal with this but they are so strong and usually go through the anger phase and then we move on to accepting our life and making it great.

Anonymous said...

Technical question....are we SURE that lil' Scotty had type I DM? You mention him being chubby and a bit of a chowhound. I ask because a patient of mine (in Home Health) was a seven year old obese Hispanic child with Type II diabetes.

The mother was cluless and not interested in learning how to manage his diet and disease, even after we sent out a bilingual RD to help her learn how to cook ethnic food for her son.

I don't know if he is still alive, as he would be 20 now. Last we saw of him at age 13, he had already had one BKA and vision loss.

Pattie, RN

Anonymous said...

good swift smack......

some children just need to be spanked. Works well, works fast...

Anonymous said...

My heart breaks a little for this family. I had to take a daily shot for awhile in order to maintain a much-desired pregnancy. Even as an adult, this really sucked and I pampered myself to get through it. One shot a day, for nine short months. This poor kid is looking at multiple shots a day for the rest of his life. He's only five and it's actually sort of the job of kids to test some boundaries.

And that poor mom. If *my* child had been diagnosed with a lifelong, life-threatening illness, I would find it really hard to deny them a simple cheeseburger, even though I know that is not the healthiest choice.

It sounds like they need an alternative treatment plan. A shot after the meal, maybe? Someone besides mom to deliver the shot? The families I know of with critically ill children often have someone besides mom do anything painful. That way mom remains absolutely safe, not the person who delivers the pain. Doesn't every kid deserve that?

Getting this family connected with other families in the same situation is a great idea. This is not the first clever kid with diabetes to come along.

coulrophobic agnostic said...

Oh my heck, this is so much like the situation friends of my parents' were in when their daughter was diagnosed with juvenile diabetes. Everything she wanted, she got, and believe me she didn't ask nicely. This kid was nice enough to be around when she got her way, but she was manipulative from birth and it only got worse once she was diagnosed. And her brother was completely neglected, turning him into a complete terror. The father finally checked out and just tried to ignore everything, and the mother was as shrill and shrieking and unpleasant as the daughter.

The boy grew up okay - which shocked me, I honestly thought he'd be in jail by now - but the girl is still manipulative and spoiled. She got into law school by being mistakenly admitted due to error and threatening to sue the school if they didn't let her attend. They caved.

I gotta say I don't miss these people.

Stop smoking information said...

After reading some of the comments and seeing patients first-hand in the ED, it's amazing how parenting style figures into the equation. I learned not to fault the kids, but rather the parenting. I was glad to see you approach the parent as the root of the problem, rather than complain about the kid (which a lot of healthcare workers do).

Obviously, that Mom (and Dad, if he's in the picture) needs to help her kid learn how to be disciplined, especially given his diagnosis.

Natalie Hodge MD FAAP said...

Very Nice Post, I'm not sure if this hold true for teenage girls ( perhaps the opposite in my experience) but this might explain why my husband is such a crybaby. Well, I did have three children without so much as a tylenol, so I expect that as women our life experience pulls affects the ways we experience pain. Nice to read such a lighthearted post.

Natalie Hodge MD FAAP
Chief Health Officer
www.personalmedicine.com