Dr. Bob: My child has been identified as being behind in development. She is behind in both motor development and her speech. I have been referred for further evaluation but am concerned about the delay in scheduling those appointments. Any suggestions?
Answer: I share in your concerns. Monitoring your child’s progress developmentally is such an important task. Please be sure to seek the advice of your pediatrician with any concerns. Your question brings up several points.
- It is important for parents to know what to look for in terms of typical development. The CDC has a great milestone tracker on their website (cdc.gov). Family and friends can be quite helpful when assessing your child’s development, but they are not experts. Your pediatrician is specifically trained to evaluate development and recommend further evaluation.
- Development can be so dependent on a variety of factors. Vision and hearing are so important and imperceptible changes can cause significant problems.
- My decades of experience would often give me clues as to the motor development. Assessment of the muscle tone and strength and certain reflexes will give clues as to the need for specialty evaluations.
- Motor and neurologic evaluations might include a neurology evaluation and/or cranial imaging (CT or MRI). Certain patterns are more concerning than others. While x-rays are often sought, they should only be done when necessary to avoid unnecessary radiation and to minimize the need for possible sedation.
- Referral to developmental/behavioral pediatricians can be quite helpful but there tends to be a long waiting list. Please get on the waiting list and be gently persistent.
- As a pediatric geneticist, I saw children with developmental delay all the time. Geneticists can evaluate the child and consider how the family history might be an influential factor. This type of evaluation can be quite comprehensive and help coordinate other evaluations as needed, in conjunction with your child’s primary pediatrician.
Above, I was emphasizing the need for a proper diagnosis. A proper diagnosis is based on a thorough history, physical examination, and appropriate testing. A correct diagnosis can lead to specific interventions that are critical to the best care possible.
But I have to mention the need for interventions even when there is not a specific diagnosis. Interventional therapies (physical, occupational, or speech, for example) do not need to wait until you can see all of the specialists. It is imperative to try and work on the areas of development that can be strengthened. Learning how to work with a child who is behind on motor skills can be developed with physical therapists who will assess muscle functions and joint movements and help with positioning and encouraging movements. Occupational therapy can augment some of the “soft” skills of early childhood (positioning for learning, communication, play). Speech therapy will assist with sound processing and often swallowing problems that need attention.
Having a child who is behind in her development can be quite stressful. You want to know what the problem is, why is the problem occurring, what needs to be done to find out, how can you find out, what do you need to do going forward, and what will the future hold. All of the questions need to be addressed but usually not all at once. It is perfectly reasonable to insist on the best answers possible for these questions but remember you also want the medical team to be as honest as possible.
You are about to embark on a tough journey but don’t give up. Your medical team is here for you. Use them wisely.
Dr. Saul is Professor of Pediatrics (Emeritus) at Prisma Health and his website is www.mychildrenschildren.com. Contact Dr. Bob at askdrbobsaul@gmail.com with more questions.