Puberty and pizza rolls: Facing feeding challenges with Sanfilippo

A columnist searches for answers when her teenager loses the ability to eat

Valerie Tharp Byers avatar

by Valerie Tharp Byers |

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About once a month, a group of friends and I share our latest favorite memes. It’s always a witty and humorous collection, so I take a few minutes to read through them when they’re sent around. This time, though, one of the them stopped me in my tracks.

It read: “What’s it like having a teenage boy you ask? My 14-year-old son just ate 52 pizza rolls and just asked me what’s for dinner.”

For most people, the meme is pretty accurate: Teenage boys should be stuffing their mouths with food around the clock to keep up with growth spurts and puberty. However, our teenage son is having trouble just getting food in his system.

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A parent’s heavy heart

Will recently turned 13, but we don’t have to worry about him rifling through our cupboards and eating us out of house and home. He has Sanfilippo syndrome and is currently struggling with food challenges.

These challenges have happened before, as Will used to get stuck in the repetitive act of chewing without swallowing. But those instances were relatively short in duration, and we often attributed them to a loose molar that had been bothering him.

The current situation started around the time school was letting out for the summer. While we do have a few good days once in a while, this summer has mostly been problematic. Will is pocketing food more than he used to and taking much longer to eat. Each meal takes at least an hour, unless we have to cut it short to get to an activity or appointment. And he’s losing weight.

We’ve been living with Sanfilippo syndrome for eight years, and we knew what would happen as Will grows up. Yet while I keep thinking I’m as prepared as possible for the inevitable progression of his symptoms, I continuously discover that I am not.

It’s been difficult enough to watch as our hyperactive boy — who used to run everywhere, even in circles — has slowed down to a walk. It’s been heartbreaking to hear fewer and fewer words from our son’s sweet voice — until they were eventually just gone. But to see Will start to lose his joy of eating? That’s been utterly devastating.

We know that many children with Sanfilippo eventually need feeding tubes, and we are prepared for that route the moment it is deemed necessary. To process all of this, my husband and I had to step out of our emotional upheaval and put our medical detective hats back on. We needed to evaluate Will’s eating and decide on the best course of action. 

Is it time for a feeding tube? Or do we need to alter our approach to feeding?

While Will’s weight loss is concerning, it isn’t severe yet. His weight and body mass index are still within healthy ranges. Chewing seems to be the main issue, as he can easily swallow water, milk, applesauce, and yogurt. He’s also growing like a weed, so it’s possible that he is in the middle of a growth spurt. Maybe we’re just not keeping up with his caloric needs. He depends on us for every calorie and requires supervised feeding.

There simply was no more time for wallowing and worrying. It was time to make a plan.

Taking action

We used a children’s energy needs calculator to see how many calories Will needed daily. It turns out he needed more than what we were offering him. (He was getting filling meals, but man, growing boys need a lot more calories than we had estimated, and he can’t tell us when he’s hungry.)

While we are waiting to get him in for a feeding consultation, we considered strategies we could implement in the meantime.

He had already been eating nutritious food with healthy fats, but he needed more. Since we can’t add more hours to the day for eating, we needed to add as many calories as possible to each meal. Whole milk pudding, protein powder, ice cream, butter on everything — all calories count. My husband even made a trip to the baby food aisle for pureed meats to make sure Will was getting protein that way.

Chewing problems were addressed by picking up rice crackers and puffs in that same baby food aisle. Will needed simple, dissolvable food to get his chewing muscles back in shape, and those fit the bill.

Currently, it seems as if the plan is working. We’re having more good days now in which he’s chewing and eating well and the scale has stabilized. I don’t know if it will last, but these little victories help stabilize us so that we can focus on what matters. Sanfilippo isn’t going to stop, but neither are we. I’ll even puree pizza rolls if that’s what it takes!

A teenage boy in a blue and red tie-dye T-shirt sits at a kitchen table.

Will prepares to fuel the day with a calorie-laden breakfast. (Photo by Valerie Tharp Byers)

Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.


Rosa Navarrete avatar

Rosa Navarrete

Los felicito por su valentia de no rendirse a este syndrome tan debastador paro nosotros Los Padres, al mirar cada dia como se deteriora la salud fixica y mental de nuestros hijos. Yo soy una madre con una hija con el syndrome de San filippo A ella se llama Claudia Rodriguez y tiene 37 años de edad .Claudia tiene el feeding tube desde hace 14 años de edad y esta muy saludable por ahora gracias a Dios. Hasi que adelante con su hijo Will. Y que Dios Los ilumine siempre.

Translation: I congratulate you for your courage in not giving in to this devastating syndrome for us parents, as we watch every day how the physical and mental health of our children deteriorates. I am a mother with a daughter with San Filippo syndrome. Her name is Claudia Rodriguez and she is 37 years old. Claudia has had the feeding tube for 14 years and is very healthy for now, thank God. So go ahead with your son Will. And may God enlighten you always.


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