As parents, our worst nightmare is seeing our child in distress and not being able to help. When that happens, we turn to medical professionals, trusting that they will provide the care our child needs. Unfortunately, that’s not always the case. If you ever find yourself in a similar situation, this is what we learned—and what we wish we had known sooner.

Our Experience

Recently, our son developed the flu and experienced a high fever ranging from 102.5 to 104.5 for several days. Alongside that, he suffered from severe insomnia, going for at least four nights without proper sleep. He began experiencing an altered mental state, including delusions, auditory hallucinations, paranoia, and anxiety.

He was scared. We were scared. We knew something wasn’t right.

When we brought him to our local ER, Self Regional Hospital, we expected a thorough evaluation and treatment plan that addressed his full range of symptoms. Instead, we encountered dismissiveness and a focus on protocols that didn’t seem to apply to his condition. As parents, we suspected a rare post-viral effect impacting his neurological state, with the primary concern being his severe insomnia. However, our concerns were largely brushed aside.

What Went Wrong

• A Misunderstood Request: When I said, “I want something to sedate him,” I meant that he needed help sleeping to reduce his anxiety and paranoia—not heavy sedation. I used the wrong word, but as a parent, I relied on medical professionals to understand the root of the issue and recommend the best course of action. Instead, I was given a lecture on how dangerous it is to sedate someone.
• Lack of Consideration for His Medical History: Our son has two brain abnormalities—Craniosynostosis and Dysgenesis of the Corpus Callosum. Seizures were a concern, but when I brought this up, it was dismissed rather than explored further.
• Missed Treatment Opportunities: His labs showed dehydration and a sinus infection, yet these conditions were not addressed. We expressed concerns about him having Post Viral Syndrome. That was also dismissed.
• Escalation Instead of Collaboration: Rather than listening to us as parents and working together to find a solution, the approach taken made us feel like adversaries instead of partners in our son’s care. At one point, I was even threatened with removal from the hospital for calmly advocating for my child.
• Premature Assumptions and Unnecessary Fear: The medical staff repeatedly mentioned that he was going to a youth facility after the morning psych evaluation. This was said without a full understanding of his condition and should never have been assumed or discussed prematurely.
• Unclear and Unexplained Protocols: At no point were the hospital’s protocol rules explained to us, yet we were constantly being corrected and reprimanded for things we didn’t even know we were doing wrong. Instead of guidance, we were met with frustration and criticism, adding unnecessary stress to an already overwhelming situation.

The Outcome

Thankfully, the morning doctor took a different approach. He explained the lab results, made a referral to a pediatric neurologist, and suggested testing for PANDAS (a condition that can cause neuropsychiatric symptoms following an infection). This was the information and guidance we had been desperately seeking.

What We Learned

If your child is experiencing neurological or psychiatric symptoms following an illness, and you feel that your concerns are not being taken seriously, here are a few steps we recommend:

1. Know Where to Go: If we could do it over, we would have bypassed our local hospital and gone straight to Greenville, where pediatric specialists are more equipped to handle complex cases.
2. Be Cautious About Medical Terminology: Avoid mentioning potential self-harm unless it is the primary reason for your visit. Miscommunication can lead to unnecessary interventions that may not align with your child’s actual medical needs.
3. Trust Your Parental Instincts: No one knows your child better than you do. If you feel something is being overlooked, speak up—again and again, if necessary. I also suggest parents look up PANDAS /PANS. These are not very well-known medical conditions.

Gratitude Where It’s Due

While our initial experience was frustrating, we are grateful to the morning shift doctor, Dr. Taylor, for his professionalism, thorough explanation, and willingness to take our concerns seriously. His approach provided the answers and action plan we had been seeking from the start.

Final Thoughts

Emergency room visits can be overwhelming, especially when your child is in crisis. Our experience taught us the importance of knowing where to go for the best care and how to advocate effectively in a high-stress medical setting. If you ever find yourself in a similar situation, we hope our story helps you navigate it with more confidence and clarity.

Your child deserves the right care—and as parents, you have the right to demand it.

Benjamin Jr. also wrote a blog post from his perspective. You can read it here