Tuesday, February 10, 2009

Pediatric eye doctor

Mike did doctor duty twice today for little mister Jude. He had a pediatrician appointment who confirmed that Jude did have a sinus infection now, and he is now on medication. He then skipped over to the ophthalmologist for Jude's first eye check up. The neurologist wanted to have Jude's vision checked due to his other issues . Mike explained that the doctor dilated Jude's eyes so she could see inside. She is the first doctor that we have visited that immediately pin pointed that the damage she saw looks like "the cause of a stroke". She said his optic nerve is gray from lack of oxygen, and damaged. She then said the eyes themselves are "beautiful" so it's a communication problem from the brain to the eye thus CVI. CVI is cortical visual impairment, for more info you can read here http://en.wikipedia.org/wiki/Cortical_visual_impairment. He is also diagnosed with optic atrophy (the gray optic nerve), and intermittent extropia (lazy eyes or eyes that wiggle). The prognosis is "guarded", and we are to go back in 6 months. Since Jude is so young we are once again on a "wait and see" mode. My cousin joked, and said rather than naming Jude we should have given him a symbol like Prince because everything is "wait and see". This in turn creates new information that I will need to share with the states therapy departments.

Jude woke up crying last night two different times with seizures. I am hoping that once we knock our this sinus infection the seizures will slow down. I am becoming convinced though that the topamax is no longer working. I have heard there is a seizure drug called Keppra that has been great for kids. I am not sure they give it to kids as young as Jude, but we shall see. Mike brought Jude by to see me after his doctor appointment. I looked at his tired face with his dilated eyes, and I saw the little boy inside. I also saw that little boy has some serious issues that will need treatment. We are there with him though, and just need some support. I knew in my heart Jude had vision problem before being told. He responds to light, and has moments of clarity, but it's still sometimes hard to understand why one issue after another keeps coming up.

My cousin called today asking if Em can go to a spring break camp. I would love for her to go so I am hoping we can swing it.


Rich said...

Be very very very mindful of any eye surgeries the doctors suggest... DO YOUR RESEARCH... And though they may suggest something now, some times it's better to wait till the child is older. (Like the lazy eye)... and some times in kids with CP the corrections will do no good, because he CP will over ride the correction.

Akron Children's Hospital (OH), Wills Eye (PA), and Pennsylvania College of Optometry are all good departments. :-)

Carrie said...

I haven't checked your blog in awhile...the new header pic of Jude is so adorable. He is such a handsome boy!

Holly said...

I agree with Rich about being careful regarding eye doctors. Get a few opinions from a few different doctors before making decisions.

Kids with CP have muscle issues(as you know) so as the kids grow the muscles and their tone are constantly changing. So any surgeries may not do the trick. We are waiting on surgery with Caleigh due to this reason. As far as CVI goes, Caleigh has it as well. Through all my research vision is can get better up until age 6-8.

Caleigh is on Keppra as well. She's been on it since she was about 11 months old. She has silent seizures, but we feel like the Keppra has helped.

Email me if you want to chat about doctors and meds and therapy stuff. Caleigh being a little bit older makes all my research new. I can probably help out.

Cjengo said...

Thank you Rich I appreciate your comment. With Jude the thoughts on surgery is that it won't be needed because there isn't much they can do. That is what we have been told anyway. I will be sure to remember what you said though.