2 steps forward...

1 step back.

Well, more like a giant leap back.

Today was Deacon's check-up with his neurologist. Dr. Foster is the 5th neurologist we have had experience with, the first who wasn't connected to Texas Children's Hospital, and the only one we have loved. He shows a real interest in Deacon and strives to find a cause, even when the seizures seem to have disappeared with medication. The doctor said he has thought about Deacon since his last appointment because his case is so perplexing. He still doesn't fit into any cookie cutter epilepsy diagnosis, so we are going to do a few more genetics tests.

Dr. Foster asked lots of questions about development and was most concerned with Deacon's speech. I told him we had been waiting for his hearing test, and when that was completed we hadn't heard anything about the Speech Evaluation from ECI. He suggested Deacon be evaluated and start receiving services.

He asked if Deacon had been diagnosed with autism before. I told him about our first visit to his pediatrician when this all began and our original concern for autism, but with the epilepsy and vision issues, they seemed like a likely explanation for the autism symptoms. He said that with Deacon's limited vocabulary, verbal, and non-verbal language; lack of initiated interaction and imaginative play; and some repetitive behavior leads him to believe Deacon has AUTISM.

Ugh.

It seems like the visits that the initial bad news has been given are the times that I tell Brian not to bother taking off work, and I take Deacon alone.

The wind was knocked out of me.

Dr. Foster thinks the autism is caused by the epilepsy, so there is hope that his improvement will exceed that of a typical child with autism who has no other symptoms or cause, and by the time he is 8 or so he may not have any issues. He was impressed with Deacon's eye contact, smiling, and improvement since the seizures stopped.

When I called Deacon's ECI Case Manager after his appointment, she was surprised by the news, especially with all of the vision issues, so I am eager to hear from his Vision Specialist and Neuro-Opthamologist as to their opinions. We are also about 6 months in on the one year waiting list for Meyer Center for Developmental Pediatrics where Developmental Specialists will weigh in.

The news sucks, but my faith couldn't be stronger. The first thing I did when we got in the car was open up the Bible App on my phone, to the verses that have reminded me of God's promise:

My friends, be glad, even if you have a lot of trouble. You know that you learn to endure by having your faith tested. But you must learn to endure everything, so that you will be completely mature and not lacking in anything...God will bless you, if you don't give up when your faith is being tested. He will reward you with a glorious life, just as he rewards everyone who loves him.

James 1: 2-4;12

God has gotten us this far and I have no doubt that Deacon is exactly as he should be. I also know that Deacon has conquered all other labels assigned to him and continues to amaze us every day with his improvement.

Please continue to pray.

More Appointments

Whew! What an exhausting day! Brian, Deacon, and I spent the entire day at the hospital appointment-hopping from neuro-opthamologist, EEG, and lab work.

First appointment was with the eye specialist. They dilated Deacon's eyes and sent us to the waiting room, where we sat for almost 2 hours. Finally we were called back to see the doctor.

The good news: Deacon does NOT need glasses. Seriously. Deacon's prescription is +1.75 and she said that she typically doesn't even CONSIDER glasses for anything less than +3. She told us the near-sighted/far-sighted prescription he was given is a pretty typical one for children his age, just because the eye/vision hasn't completely developed for small children. Looks like I will be calling the eye doctor tomorrow for a refund on the $500 glasses.

The bad news: (At the moment I don't know if this is BAD news, but because it is not good news, it is going in the "bad" category.) Deacon was diagnosed with Cortical Visual Impairment due to his Infantile Spasms. This means that his eyes are healthy and work exactly as they should, but the brain (occipital lobe where we already knew there were issues) doesn't know how to process what is being seen.

Are you ready for your lesson of the day?? Here is more info regarding CVI:

Children with CVI frequently have fluctuating vision where their vision may be different at various times of the day. Their central vision may have spotted blind spots and their vision may be analogous to looking through Swiss cheese. Consequently, they often do not make eye contact and their eye hand coordination may be poor. Children with CVI often have many interesting behaviors. Aside from not making eye contact, they are highly stimulated by high contrast, rotating, and moving objects. They frequently look at ceiling fans, the scrolling credits on videos, and some stare at blinking and flashing lights. A small percentage are extremely sensitive to glare and bright light and will keep their eyes closed or turn away and stare into a corner of the room. Children with CVI frequently have very sensitive peripheral vision and they can become overwhelmed when they are in crowded places that have a lot of visual noise. Their visual attention fluctuates tremendously and they may demonstrate short periods where they use their central vision to focus and identify objects but their attention quickly weakens and they then glance at objects with their peripheral vision. During these times, they appear totally blind and use their hands to interact with their environment rather than using their vision to guide their hands.

The doctor gave us the impression that if we get his spasms under control, his vision should improve significantly. I think this is a little comforting to us just because he doesn't have a bunch of separate issues to tackle, but just one BIG obstacle for us to battle and overcome. And with spasm elimination Deacon's life will change a million times over. But for now, this diagnosis means he qualifies for visual therapy through Early Childhood Intervention, bringing him to a total of 3 therapy sessions each week.

Next came the EEG. Deacon was ready for a nap by this point, so it was perfect timing for his testing.

Deacon with all of his wires

his poor hair after plugs were taken off (the red spots are from the marker they used to mark wire placement)

After the EEG was bloodwork where they attempted to draw blood and finally got it right on the 3rd try. We didn't receive any results today for the lab work or EEG, but will hopefully find out a lot more on Monday with his Epileptologist appointment.

Deacon was amazing the entire day and Brian and I enjoyed spending the time with him and seeing the big improvements he has already made since being on his new medication. He is laughing, smiling, and making eye contact so much more, and is having about 4-7 spams a day! We are hoping that maybe just by increasing his current prescription he will be spasm free and won't need to try ACTH.