Friday, April 24, 2015

Getting everyone on the same page.

One of our many challenges is making sure that Levi’s support team is on the same page. Even when Levi was very young, different doctors wanted to treat the same symptoms in a different way.
As an example, when Levi was one year old, he was really small. So small that he wasn’t even on the chart for height, weight or head size. His pediatrician sent us to a GI doctor. The GI doctors first assessment was that he wasn’t getting enough calories. My wife and I did our best to pack on the calories over the next few months. When we went back to the GI, not much had changed. He was still below the zero percentiles for height, weight and head size. The GI again told us that he wasn’t getting enough calories. He recommended a feeding tube. This took us completely by surprise. He may have not been on chart but he certainly didn’t look unhealthy. He wasn’t thin. He was just small and in our opinion, well proportioned. We decided to not move forward with the feeding tube because we just didn’t feel right about it.

A short time later we took Levi to his neurologist. He also noticed that Levi was small in stature. We told him about his trips to the GI and how they wanted to go with a feeding tube. After reviewing the data himself, he said that his head wasn’t growing at the rate of normal development. It was growing, but just at a slower rate. He also told us that if the head doesn’t grow the body doesn’t grow. He recommended that we didn’t do the feeding tube and continue to monitor the growth of his head size. Needless to say, he was spot on. Eventually Levi’s head started to grow to the point where he made it on to the chart. His body followed along with it. Now Levi may not be the biggest boy in his age group but today he is comfortably on the chart and healthy. The GI was made aware of Levi’s neurological issues but was looking to treat him based on select symptoms.

Most recently we had a positive experience of everyone working together. It was determined that Levi needed new braces. On a weekly basis, Levi sees two physical therapists. One therapist is part of the school system and the other is from a private practice. They are both absolutely wonderful and have done amazing things with Levi.

We took Levi down to get fitted armed with some additional information from both therapists. As it turned out, the two therapists had two different opinions on what type of braces Levi should get. The person measuring and evaluating Levi for braces also had his own opinion. One wanted a bigger version of what Levi currently had. One wanted something similar but with the hinge at the heel. One wanted a brace with a support down the front of the leg. We certainly appreciated everyone’s opinion and all 3 recommendations made sense when it was explained and demonstrated to us. How do we decide? In the end, we got the two therapists in touch with each other to discuss it. After a brief call they were able to settle on the best course of action for Levi. The braces turned out great and Levi is doing really well with them.

Having a special needs child means you always have to look at the big picture. He has a big support group and everybody needs to work together. Every time Levi is introduced to a new doctor or specialist, we make sure they clearly understand his neurological issues. We make the assumption that his Cerebral Palsy is part of the equation and we need to look at all angles and not just treat the immediate symptoms. Give them as much information as you can. Medical history is critical. If you still have concerns about a course of treatment, get them to consult with the other doctors or specialist treating your child. Get everyone on the same page.