It’s been a rocky road lately, but things are getting better

Often my columns are concerned about my oldest son’s health, given his rare disease. This week, however, I had reasons to worry about and care for my broader family’s health — including my own.

Recently, I had to take a break from writing, as I’ve been dealing with some personal issues that have taken a toll on my mental health. Things are getting better, though, and I’ll be starting counseling soon, and I’m looking forward to that.

Aside from my mental health concerns, life has been hectic lately. For starters, my oldest son, Cayden, who has infantile-onset Pompe disease, turned 7 at the end of February. The day before his birthday, we took a long drive to Philadelphia for a checkup with his pulmonary specialist. Traffic was heavy on the way, but thankfully, everything was smooth sailing on the way back home.

During the appointment, the doctor was impressed! Cayden has been doing extremely well in terms of pulmonary function. We’ll have to return in six months, but that’s the norm. Even though Cayden’s been doing well, we still have to go to the pulmonologist, who plays a big role in helping Cayden and other Pompe patients manage any respiratory issues that might arise. The doctor didn’t make any changes to Cayden’s care plan, recommending only that we keep doing what we’re doing because it’s clearly working.

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June 11, 2024 Columns by Keara Engle

Infantile-onset Pompe disease was no match for my son’s bowling skills

Cayden Camacho celebrates his seventh birthday at a bowling alley with friends and family. (Photo by Keara Engle)

After we got home, we headed to the bowling alley to party like rock stars for Cayden’s birthday. Family and friends arrived, making Cayden really happy. It was a Captain America-themed party, because Cayden is really into superheroes. But in my mind, Cayden is the bravest superhero of them all.

The next day, I had to take my youngest son, Kylan, to the doctor for his six-month well-child check. I can’t believe it’s been six months since he was born! He received a good report from the doctor. He’s finally starting to gain weight after I discovered a new formula that works better with his acid reflux. Now he’s not spitting up all the time. He weighed in at a little over 14 pounds. Woo-hoo!

Not so fast

Things were going well and I though everything would calm down after that, but a few days later, all of my boys started getting sick. Cayden and my 2-year-old, Kyree, started getting fevers, runny noses, and nasty coughs. I tried to keep them away from the baby so he wouldn’t catch the nasty bug, but it’s nearly impossible to prevent the kids from catching their siblings’ illnesses.

Kylan started to get sick, and initially, he handled it well. But then things took a turn for the worse when he began coughing and wheezing. He struggled to breathe. The wheezing was getting terrible, and he was having a hard time drinking a bottle because of all of the congestion. So I got him to the pediatrician right away.

Keara Engle’s 6-month-old child, Kylan Clark, receives a nebulizer treatment at the doctor’s office after being diagnosed with respiratory syncytial virus. (Photo by Keara Engle)

The doctor said he had bronchiolitis, a common lung infection. Then a rapid test for respiratory syncytial virus (RSV) came back positive. Kylan received nebulizer treatments, which seemed to help a little. Then he got a steroid shot in his thigh. The doctor instructed me to perform the nebulizer treatments every three hours until we returned to the clinic the next day, as the doctor wanted to monitor Kylan closely to see how he’d respond to the treatment.

The next day, Kylan was still wheezing a lot, but the doctor said that the fourth and fifth days of the illness are usually the worst ones. She was right, because after that, Kylan started coming around. The wheezing is getting better, but the doctor said his cough may linger for weeks.

It was scary to watch my baby go through this, but I have experience with RSV because Cayden had it when he was 3, causing him to go into respiratory arrest. Cayden’s experience with RSV was much worse because his lungs were weak at the time because of his Pompe disease. Thankfully, he recovered, and his lung function has improved since then.

Things are finally starting to calm down a bit, although I better not jinx it! I’m just happy that all of my kids are on the road to recovery and life is starting to look better for me, too.

Note: Pompe Disease News is strictly a news and information website about the disease. 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 Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.