Pediatrician mom offers advice to parents of kids with sensory issues

Mothers just know. They instinctively know when their child is sick, something is bothering them, or even when there is something just not quite right.

I spoke with one mom who knew. She knew that when her daughter was just 2½ years old something just wasn't right. She looked to her daughter's pediatrician for answers.

It took longer than she had thought it would. But looking back, she understands why. Mom, who is a pediatrician herself, says even with her Ivy League training she did not have all the tools she needed to make the diagnosis back then.

Eventually Dr. Nisha Kakodkar's daughter was found to have special needs. She says that since then she has learned quite a lot, both as a mother and a pediatrician.

As a mother, she used that newfound knowledge to make changes to her family life. “At one point I was just overwhelmed,” remembers Kakodkar. “My daughter had stopped eating because of sensory issues with food. None of the caregivers could get her to eat. When I finally did get her to eat I realized it was consistency in caregivers that she needed. She needed me to be there with her more.”

She and her husband rearranged their lives. They moved from the city to Naperville. Kakodkar put her career on hold to be at home with her daughter. Leaving a career she loved was certainly challenging, but it gave Kakodkar the flexibility to be with her daughter, provide her the consistency she needed and even to work with her daughter's therapists so the learning could continue at home. “The changes were difficult but it is what my daughter needed at that time,” shares Kakodkar.

Her daughter is now 8 years old and their family has expanded with another daughter who is 5 years old. With both girls in school, Kakodkar has been able to resume her practice on a limited basis — she practices with Advocate/Dreyer Medical Clinic in Aurora ­— but still makes it a priority to be home after school.

As a pediatrician, Kakodkar has made it her mission to change what she can to make doctor visits more accommodating for children with sensory issues. “I want to turn something difficult into something to positively affect change,” says Kakodkar. “There are small modifications that we, doctors and parents, can make that will make a huge difference.”

She has some recommendations for parents.

• Make the wait less stressful: If the waiting room is too noisy, ask if you and your child can be fast-tracked into the exam room. If they cannot do that, offer to give them your cell number and ask if they could call you when it is time for your visit. While waiting, move to an area better suited for your child. Ask if your pediatrician has a picture story or picture schedule for their visit. If not make your own.

• Make the most of your time with the doctor: Make a list of questions so you can be sure to have all your concerns addressed. If you need to transfer records, hand carry a hard copy in case there was a hitch with the transfer. There is nothing worse for a doctor than not having all the information available. If possible bring another adult with you who can act as a note-taker or a second pair of ears so you can discuss the conversation after leaving the office. Most visit times are 15 minutes. If you require more than that, be sure to ask when making the appointment. Bring entertainment for your child so that your attention can be on your questions with the doctor.

• Handling medication: If the medication and dosage given is going to be difficult to administer, ask if there are other options. Kakodkar recounts an experience with an ear infection where a parent dreaded the idea of trying to give 10 days of an antibiotic to her child with sensory issues. Kakodkar says there is a treatment that can cover that in one shot.

• Handling disagreements: If you feel your questions haven't been answered or you are not satisfied with the diagnosis, continue the discussion with your doctor. Ask if there are other evaluations that could be used. “Listen to your parental instinct and don't be afraid to share your concerns with your doctor,” says Kakodkar. “Give your doctor the opportunity to partner with you in your child's care by fully expressing your concerns.”

• Manage your expectations: Pediatricians are trained to identify health problems and triage the treatment as appropriate. They may not be the experts with full knowledge of all things sensory-related and therefore may not be able to answer all your questions during a visit. But you can expect that they will forward you to the right specialists/therapists.

Kakodkar says that as a pediatrician, her goal is to do great things for her patients and their families. She is actively working to make small changes in hopes of making the whole experience less stressful for parents and children where she currently practices.

As a mom she is focusing on both her beautiful girls. Her 8-year-old loves reading and writing stories, summer camp and hip-hop. Her 5-year-old loves ballet, guinea pigs and tennis.

Looks like Dr. Kakodkar has her hands full on both fronts.

Dr. Nisha Kakodkar is a pediatrician practicing with Advocate/Dreyer Medical Clinic in their Fox Valley Villages location in Aurora.

• Sherry Manschot is the marketing/public relations manager at Western DuPage Special Recreation Association. She leads a parent network of special needs families at WDSRA. Manschot can be contacted at sherrym@wdsra.com. More information about WDSRA can be found at wdsra.com.1>