Brandon (left) with his brother Riley
When our family moved from Minnesota to Philadelphia in 2012, my husband, Kirk, and I had one overriding concern: Would we have access to a top-notch pediatric healthcare system for our son Brandon?
Brandon, now 8, has a host of medical problems. He has a lymph/vascular malformation, asthma, gastroesophageal reflux disease (GERD), major sleep disturbances (sleeping four hours a night at the most), low muscle tone, major constipation, periodic fever syndrome and a history of seizures.
Complicating treatment for those conditions is the fact that Brandon is on the autism spectrum.
Children on the spectrum need to be treated by doctors who “get it.” From my perspective, a big part of that is understanding that autism behaviors, like meltdowns, aren’t to blame for other medical issues. Instead, if something is going on medically, fix that, then the behavioral issues will usually resolve.
At the Children’s Hospital of Philadelphia, we’ve consistently found providers who understand that.
It all starts with our primary care pediatrician in the CHOP Care Network Haverford office, Dr. Kathy Long. She’s very in tune with Brandon’s needs and understands that he might have a meltdown and need more time. She has been a tremendous advocate for Brandon’s medical needs and acts as a bridge to his educational needs, too. Dr. Long also always asks how we are doing as a family because she know that autism can affect the whole family, including our older son, Riley, who’s 9.
Brandon’s developmental pediatrician, Dr. Amanda Bennett, has been phenomenal. She has a holistic view of his developmental needs. She knows where her expertise resides and, if she needs to, refers us to other CHOP specialists — clinicians who have an understanding and appreciation of children with developmental issues in addition to being experts in their specialty. Not all doctors are good with children on the spectrum, and with Dr. Bennett’s help, we find those who are.
One great example is our GI specialist, Dr. Raman Sreedharan, and our GI nurse practitioner Millie Boettcher. They have seen Brandon at his worst, and they always stay calm and work through it. I notice that they talk to him, and not just about him, which is a fabulous way to show respect. When Brandon had a GI procedure, Dr. Sreedharan made sure the waiting time before the surgery was limited, as he knew unnecessary waiting for Brandon would increase his anxiety. Millie helped us navigate an insurance issue for the special formula Brandon needs, securing reimbursement after we had been paying for it out of pocket for three years. Those are examples of advocacy in action.
I also appreciate CHOP’s system-wide electronic medical record. When we see new CHOP doctors for the first time, they already have a handle on Brandon’s medical history. With everything under one electronic umbrella, they can see it and review it in advance, which makes our time during the appointment more efficient.
We’ve been extraordinarily impressed with the quality of care Brandon has received throughout CHOP. It has helped make our move to Pennsylvania smooth. We’re so grateful, which is why when I was asked to be part of the Autism Family Partners, I readily agreed. The partners are parents with a child on the spectrum who give feedback on new projects involving autism care at CHOP. I reviewed and gave suggestions for the Autism Roadmap, which is a great resource for families. The Buerger Center for Advanced Pediatric Care was built with input from Autism Family Partners and has a lot of tactile activities that Brandon loves and also quiet waiting areas for kids who need that.
Another part of our family’s giving back is to actively participate in all the research studies at CHOP’s Center for Autism Research (CAR) that we can. We want to help them as they search for causes, which will lead to a cure, and for more effective treatment. In 2015, we launched a nonprofit called Brandonsvoice.org to raise money to support CAR’s research.
We feel extremely fortunate to have such an incredible resource like CHOP near our home, and we know partnering with CHOP and its amazing healthcare providers will give Brandon the best opportunity to have a better tomorrow. Brandon, left, with brother Riley.