Neurology Appointment

On Wednesday, November 25, I took Caden to see a top pediatric neurologist in Sacramento, on the recommendation of our nurse case manager and a few other people. Like I have mentioned before, we are trying to get Caden classified as a “status 2” at the Regional Center. Initially we were told that he would qualify if he was evaluated with delays of 50% or more in three or more areas. He met that requirement with delays in gross motor skills, self-help, and speech. However, when his case was presented, they denied him because they said he needed to have a diagnosis of either mental retardation, autism, epilepsy, or cerebral palsy.

His nurse case manager said she thought there had to be something more going on with him because of all of his developmental delays. The Regional Center was pushing me to take him to see their developmental specialist doctor but I was hesitant to do that. I felt that he was working on behalf of the Regional Center and would not be an advocate for Caden. So I didn't want to do that. I had already scheduled an appointment with Dr. Asaikar and I was planning on seeing him about Caden's issues.

I took in a stack of medical records for him to review and I also gave him a thorough verbal medical history. He asked me what my medical background was and I told him I didn't have one except for my experience with Caden. He told me I gave him a medical history as well as a 2nd year medical student. I took that as a compliment.

Anyway, after reviewing everything with me and observing and examining Caden, he said he was going to give him a diagnosis of mild cerebral palsy (CP). He believes that it is directly related to Caden's cardiac arrest and resuscitation that probably resulted in lack of oxygen to his brain. But they saved his life and we are grateful for that! Dr. Asaikar said he saw a lot of really good things in Caden. He said he was doing a lot of things right. But he also acknowledged that there were a significant amount of areas of concern. His development is all over the place. In some areas he is a couple months delayed, in others he is six or more months delayed. But he is not the "classic" case of CP that most people think of so most people would never even think he had it.

The major factors for his reason of diagnosing him with CP are the presence of some neonatal reflexes which should have been integrated and not present anymore, and the absence of reflexes which should have developed by now and haven't. He also said part of the reason for the diagnosis is to ensure he gets the necessary treatment and therapies. In his words, it is part of playing “the game.” We are hoping that this diagnosis will qualify Caden for the status 2 because that would provide us with nursing or respite care. This would help us ensure Caden's health during the winter months especially. And, it would also get him on Medi-Cal as a secondary insurance. We do not qualify for it currently because of income. However, Caden is halfway to his lifetime maximum with insurance so it would be nice to have a backup for him.

And one of the most awesome things about the appointment is when the neurologist said he was here as an advocate for Caden. He was willing to go to bat for him in order to get the things that he needed. He specifically said he wants Caden to receive PT twice a week, OT once a week, speech once a week and feeding therapy once a week. So now I need to follow up with our service coordinator at the Regional Center and see if we can get PT approved for twice a week and get speech therapy going. They are really not going to like that, but Dr. Asaikar said they typically didn't like him because he didn't let them get away with short-changing his patients. I am so excited to have him on my side and fighting for Caden!

One of the things we've decided is that we are not going to tell Caden about his diagnosis. I don't want him thinking of himself as different from everybody else. He will already know to some degree, of course. But I don't want him to grow up with that “stigma” I guess. As he gets older he will discover it on his own, especially as he starts to understand more about the reason for all his therapy appointments and doctor's appointments. But in the meantime, I hope those of you reading our blog will also respect our desires and not talk to Caden about it, or Kyler for that matter. Kyler doesn't need to know the diagnosis either. We want Caden to have as normal of a life as possible.

Thank you for your prayers. I know God continues to put good people/doctors/therapists in our lives to help us at just the right time.