Finding sources of support all over
For Mathiaz Augustin Rocha, 14, chronic pain began at age 10. He started having headaches once or twice a week; then day after day, he would have them more frequently—and they grew in intensity to a level 10. “Now it’s every day, 24/7,” says Vicky, his mom. “He wakes up with pain and goes to sleep with pain.”
The school nurse recommended he see a neurologist, who diagnosed him with two conditions: pseudotumor cerebri (pressure inside the skull with no known origin) and arachnoid cysts (cerebrospinal fluid-filled cysts that develop on the surface of the brain or spinal cord).
His doctors tried pain medications at first, but after a time of taking them around the clock, he had a bad gastrointestinal bleed. “Over-the-counter medications don’t provide any benefit, and narcotic medications would only help very briefly, or wouldn’t even begin to touch his pain,” says Vicky. “We don’t give him any medications like that now. They wouldn’t really help with his pain and could potentially hurt him in other ways.”
Mathiaz has tried a number of pain treatments that have been of no help, including over-the-counter medications, Botox, nerve blocks, physical therapy, massage, acupuncture, and dietary changes. He has had a few surgeries, some of which have helped to some degree; lumbar puncture provided some help in the short-term. Sticking with a routine of morning and evening medications is important, as is hydration; Mathiaz isn’t allowed sodas or anything with caffeine.
His pain is also affected by seasonal challenges, which is tough in Texas, where they live. One day it can be 102 degrees, and the next day, 75 degrees with thunderstorms. He might go to the E.R. once a month for a while, then twice a week for a while. The unpredictable nature of his pain is a challenge.
A shocking turn for the family
Vicky and Amado, Mathiaz’s dad, were shocked by this turn of events—the pain had come out of nowhere, and now their middle child had serious, life-altering medical conditions. For sisters Harmonee, 9, and Destiny, 18, it also meant an adjustment period.
“The girls are very understanding; we do so much together as a family,” says Vicky. “It’s been life-changing for all of us. We accommodate for Mathiaz all the time, even down to basic chores—if on any given day his pain is too high, everybody helps out. When we go to the grocery store, we’ll make a plan. He might seem OK, but then we might get 10 minutes down the road and his pain becomes super bad and he has to throw up, so we have to turn around. Or we might go to a theme park or the zoo, and only be able to stay for 30 minutes before we have to leave—and everybody is OK with that.”
Vicky says they’ve worked hard to make sure their daughters still feel their love and support. “If one of them has something going on at school, my dad, Augustin, watches Mathiaz so Amado and I can attend. Everyone helps out in little ways.”
Mathiaz’s friends are supportive, too. “I still hang out with my friends, playing video games and watching football,” he says. “It’s important to never give up—you have to keep on going. Having support from family and friends is really important.”
One of his really good friends, Hudson (or “Hud”), is one of the friends with whom Mathiaz has been able to keep a consistent connection for many years. Mathiaz used to spend overnights at Hud’s house; now they live farther apart, and Hud’s parents let him come stay with Mathiaz more often—it’s one way the families support their sons’ friendship.
“My friends understand what’s going on with my pain,” says Mathiaz. “When I have to cancel plans, they get it.”
Some stay-at-home friends keep Mathiaz company, too. While he often has to miss out on things outside his home—staying in a dark room, resting as much as possible—he’s still surrounded by friends. His bearded dragon is named Hercules. He has a chihuahua named Brownie, and a parakeet named Big Bird. His turtle: Mr. Turtle. Together, they make up a menagerie of support.
Surgery after surgery
Mathiaz has had three arachnoid cysts, one of which was surgically removed; after that surgery, he had six weeks of pain relief before it started to return. Ultimately, after that surgery his pain baseline was elevated, so they tried a VP shunt, a procedure meant to alleviate pressure on the brain. This time, he had four weeks of relief before the pain returned. He’s since had a revision to the valve of the shunt, but it’s changed his baseline again: “He’s all over the place now,” says Vicky.
Mathiaz recently received a cranial morcelization, a procedure that includes removing a portion of his skull, cutting it into four pieces, and replacing them without attaching them to each other. Surgeons hope that the procedure will give Mathiaz some relief from the pressure that constantly builds inside his head and help the VP shunt work more effectively.
“The doctors don’t think they’ll ever get him to be pain-free, but they do think they can reduce his pain a lot,” says Vicky, “maybe back to the level it was initially, when it was just two or three days a week.”
Vicky and Amado are hopeful for improvement—and thankful for doctors who finally take their son’s pain seriously. “Doctors tend to give up on Mathiaz as a patient, pushing him on to other doctors,” says Vicky. It’s frustrating to feel like they can’t always get the treatment Mathiaz needs.
Striving for education, despite challenges
Vicky says through all the pain, surgeries, and struggles, Mathiaz has wanted to keep up with school. “I like home-schooling; it’s better for when my head hurts more and I need breaks,” says Mathiaz. “I like working with different teachers online. One of my favorite classes is history.”
Because of the pain he endures, Mathiaz went from being your average active child in public school to being home-schooled and limited in all his daily living activities… but that doesn’t have to mean his education suffers, Vicky says.
Mathiaz has a 504 plan in place for home schooling, which means he can take classes from bed; he can take breaks throughout the day and do some of his work in the evening. He has more time to complete his homework, too. Many of Mathiaz’s doctors are out of town, so “home schooling” often becomes “road schooling,” performed in a hotel or hospital.
State testing can’t be done at home, and that is when things get really challenging. The medication Mathiaz takes at night puts his brain to sleep so he can rest, and it usually takes him a long time to wake in the morning. On out-of-town testing days, his 504 plan allows him to show up for testing at noon or 1 p.m. instead of 7 a.m. (If his parents force him awake too early, it will be a terrible pain day for him.) He’s also allowed to take the test in a room by himself, with only a proctor; he’s allowed to take breaks; he’s given more time for testing; and he’s allowed to take a 30-minute nap.
Without these accommodations, Vicky says, it would be impossible for Mathiaz to keep up with schooling. She and Amado have advocated strongly for their son to have as much flexibility as possible.
“We are hopeful,” says Vicky. “Mathiaz is a hard worker, and we know all this work is worth it—he deserves to have all the options available to make sure he’s a success.”
Sunshine Foundation: sunshinefoundation.org
Childhood Pseudotumor Cerebri (Intracranial Hypertension): facebook.com/pseudotumor.cerebri