Deacon's 1 Year Seizure-Free Anniversary

Yippee!! Tomorrow marks a year since we saw Deacon's last seizure!

I was able to get in touch with his neurologist today about his recent EEG too! He was blown away by the results. He said that the last EEG Deacon had in October was "horrible" and is amazed that this one showed no seizure activity, especially with the types of seizures he was having and his sodium receptors being abnormal.

I also discussed with him the changes we noticed in Deacon's communication when the dosage was decreased. What I haven't written on here, is that most of the words he picked up during that time have since disappeared again, leaving us with only a couple of sounds again... Dr. Foster was encouraged that he improved during that time, and suggested that we lower his dosage again and see how it goes! Between the wonderful EEG and the news of improvement with a decrease in dosage, Deacon's doctor thinks it is possible that whatever triggered the epilepsy may be gone and he could be free of it! We won't know anything for sure until we continue to decrease, and do more EEG's and MRI's to see if there is a change in seizure activity, but it is nice to have a glimmer of hope, especially with the loss of language the last few weeks!

Tomorrow is our appointment with Texas Children's Meyer Center, where we pray more optimism comes our way!

Happy Anniversary Baby D!

Deacon's Latest EEG

Deacon after his recent EEG

Deacon had an EEG back in February to see how he was responding to the change in prescription to Valproic Acid and B6. His neurologist and I have been playing phone tag for the past couple of weeks, so when I was in the area today picking up Deacon's B6 prescription (we have to special order it from a compounding pharmacy near his office, about 30 minutes away), I decided to stop by and at least get a copy of the report to hold us over until we can talk.

With a year of neurological research under my belt, I am definitely no professional, but have come to understand a lot of what is written in the reports. Before I share the results, here are parts of his previous EEG's. They are pretty wordy, so I tried to summarize, paraphrase, and define as much as possible.

January 17, 2011
Patient with abnormal EEG. No evidence of occipital rhythm, indicating disturbance in cerebral function (reason for his vision problems). In addition, there is 3-4 hz high-voltage slow wave activity (high voltage & slow wave is the worst to have) mixed with spike and sharp wave activity in occipital (vision) and temporal (speech/memory) regions. Epilepsy diagnosed.

October 5, 2011
This EEG is very abnormal because of multifocal spike wave discharge (seizure activity in multiple parts of the brain), but mostly in the left-mid temporal lobe (speech/memory). Poorly organized, not well-sustained, medium-voltage (5-6 hz) activity (which means some improvement b/c medium voltage is better than high voltage) seen symetrically. No clear focal slowing seen (also better).

February 18, 2012
Well organized, well sustained 7-8 hz (see how the number is getting bigger each time, that is good) activity seen symetrically. Sleep stages normal. This is a NORMAL awake and asleep EEG!!

Again, I haven't talked to the neurologist about his impression, but the report looks optimistic. Praise God!

Will update again when I get more information.

Deacon Update

Medical updates:

1) Labwork: The doctor called with results from the Methymalonic Acid Test, which gives a better indication of his B12 level. The highest end of the normal range is at 318, his was 321.

Guess what this means??

Inconclusive... What the heck! Can we not get a straight forward result for ANYTHING!?!

She spoke with the Geneticist again and they said abnormal usually is in the 1,000's, so they don't think it is the cause for the seizures. But, they want to do the test again.

2) 24 hour EEG: On the bright side, the hospital called yesterday and there was a cancellation, so they are now able to admit him a WEEK early for his 24 hour EEG. A week may not sound like much, but I could possibly be THE most impatient person in the entire world, so 168 hours sooner is fantastic! Not only that, but I am a teacher and the other dates we had scheduled fell on TAKS (state standardized test), and those are the worst days to miss.

We will also get his labwork re-done while admitted and b/c we will be in-patients, the hospital does the labs themselves, getting us the results much sooner.

Deacon updates:

Deacon has been in a great mood these past few weeks with lots of smiling, and some laughing and eye contact too. His coordination has grown leaps and bounds. He stumbles very little now and has improved at getting around obstacles.

I am trying to be an optimist in all this, but don't want to paint a false picture of how everything is effecting him.

You know how babies faces light up when they hear or see their parents? We very rarely get that. Most of the time there is no recognition in his eyes when he looks at us. It is like he is seeing us for the first time every day. He will wander around our house aimlessly and doesn't seem to notice or care whether or not we are there with him. He will let us hold him as long as we like, but doesn't initiate contact. He turns his head when we lean in to kiss him.

It is hard to see some of the milestones he previously hit disappear. Deacon was saying "mama", "dada", and "bubba" at 5 months and now is at least starting to be vocal again, but will mostly hum or make an "a" sound. He is still having trouble holding his bottle while upright, and wants nothing to do with a sippy cup (I have an upcoming blog dedicated to this topic alone).

The medicine has greatly reduced the spasms, but they are still happening up to about 10 times a day. Half the time he catches himself before he falls, but the other half he doesn't. He has constant cuts, bumps, and bruises on his face. Because of this we are looking into getting him a helmet. I know it sounds so terrible on my part as a parent, but I have really been delaying getting him one. Everyone who knows about his medical issues and then meet him are so surprised on how "normal" he looks. I don't want that to change. I don't want him to look "different." I don't want kids at the daycare to stare at him or ask Carson what is wrong with his brother. But, it is getting to be a safety issue, and I will choose that over something as stupid as vanity any day. And, he would wear it mostly just at daycare, where he typically gets injured more often because of the amount of cribs in his room to be bumped into.

Some days all of this can be a little tough to swallow.

But other days we catch a glimmer. The recognition. A laugh. Leaning his forehead against us as we kiss him. Snuggling tighter or laying his head on our shoulder when we hold him. That is what we are fighting so hard for. He is in there and he is relying on us to find an answer.

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.

Doctor Updates

We heard from Deacon's pediatrician today and he received the results from the hospital on both tests.

The good news: the MRI came back normal! No tumors and the brain development is right where it should be for his age.

The not-so-good news: Like we suspected, the EEG was irregular. The doctor didn't have a lot of information, but it looks like seizures and the part of the brain being affected is the occipital lobe. The occipital lobe is in the back of the brain and processes visual information such as colors, shapes, words, and numbers. Whether there is a connection to his glasses, I'm not sure...

Other than that small bit of information, that is all we know for now. They can't put him on any medication until they find out more and we won't find out anything until he has his appointment with the neurologist on Feb. 17th. We also have our meeting with Early Childhood Intervention on Feb. 1st, eye specialist on March 4th, and hearing test on April 13th, all at Texas Children's Hospital.

I'm thinking they might need to reserve us our own parking spot for all the visits we will be making.