Receiving Answers?

By Kara MacMillan in Camden's Journey on September 1, 2017September 1, 2017

The title of my first post was ‘the road less traveled’ and this explains exactly how I was feeling. I don’t know about all of you, but at the time we only knew one other family that had a child with special needs but they had a definitive diagnosis. We were not armed with the tools we needed to move forward. How do we navigate through this? Where do we go from here? I did the only thing I knew how at the time and I began researching every possible avenue to be Camden’s advocate. I have spent thousands of hours on the internet reading blogs, research articles, and public forums. I reached out to one of my best friends growing up, Melissa, who was an OT; she graciously came over to observe Camden. I talked to Mr. Dan and discussed what his thoughts were on Dr. Neil’s Cerebral Palsy statement. I researched alternative therapies, which I will get into at a later post, as well as traditional medicine. Just like every parent would do, I was determined to help him reach HIS full potential and I would do whatever it took to see this through.

Our first stop was with Ms. Jeanie for the OT evaluation 6 days after our referral from Dr. Neil. She determined that Camden was delayed in his fine motor development and we began occupational therapy on a weekly basis from that point forward. We would visit the pediatric rehabilitation facility on Commonwealth Blvd. in Ann Arbor twice a week; once for OT and once for PT. Ms. Jeanie worked with Camden on his fine motor skills as well as sensory and Mr. Dan continued with large motor skills until our next appointment with Dr. Neil.

I truthfully cannot remember when we started taking Camden to see a Chiropractor but we did this for a while as well and she was the one that suggested we see Dr. Sue McCreadie in Ann Arbor. Dr. McCreadie is a holistic pediatrician that really focuses in on the gut-brain connection. I’ll get into more on what she has done with Camden on a later post as well. We also switched his Gastroenterologist from the St. John health system over to U of M. We felt it was best to have his entire medical team through one system. Camden had grown out of his reflux and off of his medication by the time he was a year old. What used to come up to easily through reflux shifted to the other extreme when it came to digestion. Camden suffered from pretty significant constipation and this is why we continued seeing the GI Dr.

It was a month after we celebrated Camden’s 1st Birthday when we were back up on floor 6, reception C for our follow up visit with Dr. Neil. Camden’s protruding tongue and drooling had resolved by then and his muscle tone had relaxed quite a bit. Camden had made a lot of progress in Physical therapy with Mr. Dan but he wasn’t crawling and had just started pulling to stand. Just think, when most parents had already experienced their child’s first step we were working so hard to get him to crawl. Dr. Neil was quite pleased with his progress and happy that he had not plateaued or regressed. After the examination she was now questioning her previous thought of cerebral palsy. She mentioned wanting to do an MRI of the brain but she was more concerned about putting him under general anesthesia to do it. Therefore, we would wait until he was older as long as he kept making progress. She did put a referral in for Speech Therapy and wanted to see Camden back in 6 months.

From this point forward his medical team has referred to him as a ‘medical mystery’. They have never stopped searching for answers but everything comes up ‘normal’, which we are extremely grateful for although it would be nice to know what is causing this delayed development. We did have a lot of direct and indirect (through his therapists) contact with Dr. Neil in those 6 months between appointments. After me doing a lot of research and a mention from Dr. Neil at his appointment I thought it would be good to go down the genetic route sooner than later.