OpenHealth Q&A

Seeking Insights on My Son's Head Control Challenges

I’m reaching out to see if anyone might offer some insights into what could be affecting my son’s condition. He’s a 1-year-old Caucasian boy, weighing approximately 9 kg (around 20 lbs). He seems to struggle with holding up his head, though it doesn't resemble typical dropped head syndrome. While he can keep his head steady when sitting up, he has difficulty lifting it when lying on his stomach. He is able to raise his head at about a 60-degree angle with significant effort. Despite his determination, it appears that his muscles aren’t functioning as needed in this regard. Although he is unable to crawl due to this head control issue, he has started to walk and does so quite well when supported or when he’s holding onto something. He can roll over, but sometimes finds himself stuck on his tummy due to his head position. Overall, his muscle tone seems normal otherwise. Aside from the issues with his neck flexors, he is reaching all other developmental milestones and is actually ahead socially, often engaging with peekaboo to capture attention. He has shown signs of frustration due to his mobility limitations, but he cleverly compensates by pushing his head forward to look at things, followed by pointing. He can commando crawl backward off the bed to safely reach his feet. The central concern is primarily his inability to lift his head. I’m curious if anyone has encountered a similar situation? What tests might we consider to explore a diagnosis that hasn't yet been brought up? Our medical team has not observed a case like his, and they are currently investigating while we await an appointment with a neuromuscular specialist. As a bit of context: he was delivered via emergency cesarean section after failed forceps rotation, with some minor decelerations that were not deemed problematic. His oxygen saturation levels were over 98% at birth, even in the presence of transient tachypnea of the newborn (TTN). He spent a week in the NICU for low blood sugar and TTN, has experienced mild clubfoot that spontaneously resolved, and has a metopic ridge that was evaluated by a craniofacial specialist, who continues to monitor its impact. Notably, MRI scans of his brain and spine showed no abnormalities, and his creatine kinase (CK) levels were at 50. A SNP array analysis returned normal results, but we are still awaiting comprehensive genomic sequencing and have ruled out spinal muscular atrophy (SMA). Thank you for taking the time to read this and for any helpful advice or information you can share.

Answers (1)

9/11/2025, 8:40:40 PM

OpenHealth AI

It sounds like you're navigating a challenging situation with your son's head control and mobility. The difficulties you're observing can stem from several factors, and it's commendable that you're proactive in seeking insights. Although your son is meeting many developmental milestones, let's explore specific aspects of his condition to help guide next steps.

Key Points

1. Head Control Challenges: Your son's struggle to lift and control his head, despite being able to sit with stability, suggests possible issues related to muscle strength or coordination.
2. Developmental Monitoring: While he is progressing in other areas, the specific concern about his neck flexors deserves thoughtful examination.
3. Next Steps in Evaluation: Close follow-up with specialists will be essential to identify the root cause of his head control issues.

Explanation

The ability to hold up the head typically develops in the first year. In some cases, muscle tone and strength play a significant role in this development. Your observations about his efforts to compensate show his determination and potential. Given that he has good social skills and is engaging with his environment, this is encouraging.

Prioritized Next Steps

1. Physical Therapy Evaluation: If not already initiated, consider a referral to a pediatric physical therapist specializing in developmental delays or muscle function. They can assess his muscle tone, strength, and suggest exercises to improve head control and mobility.

2. Neuromuscular Examination: Since you’re awaiting an appointment with a neuromuscular specialist, make a list of all observations and concerns to ensure all aspects are covered during the visit. This may include asking about specific tests like electromyography (EMG) to assess muscle function if needed.

3. Regular Monitoring and Updates: Keep a daily journal of your son’s progress and any changes in his abilities or muscle strength. This documentation can be helpful for your medical team as they assess his development over time.

4. Engagement Activities: Continue incorporating play that encourages neck strength, such as tummy time with toys placed at eye level, to motivate him to lift his head more.

Remember to stay in close communication with your healthcare providers and share any new observations, as this can inform their approach to your son's care. You're doing a great job advocating for him, so continue to trust your instincts and seek the support you need. If you have further questions or require more specific advice, feel free to ask.