Tuesday, March 11, 2008

My thoughts on diagnosis, treatment, and specialists.

I think some people believe we should just listen to doctors. They know best right? Sometimes the most well intentioned doctor may be making a decision for you that they feel is right but they may not have all the needed information. You must ask questions and develop open communication with all the specialists you see.

Our doctors were hesitant to bring up the possibility of Cerbral Palsy for Kay. I am not scared of Cerbral Palsy. It doesn't change the way I feel about my child. It is simply something that I need to help her with and the sooner we get started the better. My family has been working with kids who have special needs for a long time. We understand what Cerbral Palsy is and know it is not the end of the world. Not all parents have experience with Cerbral Palsy so I can understand why doctors would wait to say those words. Some people might be terrified at the mention of the possibility.

The doctors didn't want to scare us. They had a real wait and see approach. We kept hearing "I am sure she will be fine. She just has some delays but she will probably grow out of it soon enough." That may be the right thing to say to some parents but not for us. I wanted to know what we were dealing with right away. I didn't want to wait and see. I pushed for her to see specialists.

The orthopedic specialist was the first to mention the words Cerbral Palsy. Wow, are you sure? Yeah, I was a little shocked because I hadn't recognised it on my own. Sure I felt sad because I didn't want my child to have to struggle. OK so what do we do. The pediatrician agreed and confirmed she had suspected it -- for how long I don't know. The doctors were trying to protect our feelings when we didn't need to be protected. We needed action.

We pushed for SMOs. If they can't hurt but may possibly help why not do it. Again the doctor was hesitant to bring it up. Let's wait and see what happens. I say just do it. Who cares if she has limited shoe choices as long as she can walk that much sooner. I would rather fix it now when she is little then wait until she is in school. Who cares how much it costs as long as we give her every opportunity. Who cares what other people think. If they point and stare and ask ignorant, insensitive questions it only reflects badly on them. I try not to trouble myself with what rude people think.

We just got the bill by the way. Total cost for SMOs and fittings 2,582. Thank goodness insurance covers it all but we would find a way even if we had no insurance.

On the other hand you don't always have to push for a diagnosis. With Kay it didn't matter whether she was diagnosed Developmental Delay or Cerbral Palsy, the treatment was the same - physical therapy. No need to rush to affix a label if she gains no benefit. Once she is a little older a diagnosis may help in her treatment but for now I say just let her be a kid. We will worry about an official diagnosis when she is ready to go to school or if it helps us with medical insurance red tape.

If I hadn't pushed the issue I may be wondering what I could have done differently. Would things be different had I started earlier. Instead I can feel secure in my decision to pursue help knowing that we did everything we could as quickly as we could and luckily it has worked well for Kay. Of course it is different for everyone. You just have to make the right decision for your family. Don't just assume that the doctors have all the answers because they don't know your family like you do.

I got Kay's PT report from Lucy. It says: Using the Battelle Developmental Inventory at 24 months she had a gross motor age equivalent of 28 months. Kaylynne is walking and running independently and with good control and coordination. She climbs and jumps getting both feet off the floor. She can kick a ball, throw a ball overhand, push a small trike with her feet and walk backwards.

Kaylynne is low tone but her overall strength has improved significantly since her last evaluation. Kaylynne has made so many gross motor gains since her last evaluation. She has good control and coordination and did not trip or fall during the entire evaluation. Outpatient PT is no longer needed at the center. She should continue to be monitored by early intervention PT.

The other day I was thinking about a conversation I had with my friend John when we were in High School. I was probably 15 or 16 and I was spending a lot of time babysitting my favorite little 5 year old buddy who happened to be autistic. John asked me what I would do if someday I had a child of my own who had problems. Without hesitation I said "I would just love them, I would love having a special child". Easy enough to say but know I know without a doubt it is absolutely true. How could you not love them?

Me and Grey my first special kid.

No comments: