Neurology Appointment

There was an opening in Dr. Poplawski's office for yesterday at 11:00. Dr. Poplawski was great - he spent over an hour and a half with us, and talked about everything he knew as well as admitting that there are many uncertainties in Shelby's case. We left with good and bad news. First the bad:

He diagnosed Shelby with Cortical Blindness. This is an extremely scary term, but it basically means that while Shelby's eyes are fine, and react normally to light, she has problems interpreting the images in her brain. There are ranges to this condition, with the most severe being complete blindness. Most children with Cortical Blindness will improve as the brain readjusts the processing from the damaged area to other good areas. Dr. Poplawski expected this to happen in Shelby's case because we have not even seen the full benefits of the shunt yet. Also, we forgot to ask about this, but it seems like since one side of her brain was much less impacted by the hydrocephalus, hopefully that side will still function properly. This is still a wait and see kind of thing but the doctor was positive despite the scary diagnosis. He suggested that we do Occupational Therapy in addition to Physical Therapy to help her function better with the vision that she does have. More than likely she will always have vision problems, but we are just praying they are minor enough that she will be able to have a pretty normal life. Here is a fact sheet about cortical blindness:
http://www.blindbabies.org/factsheet_cvi.htm

Now some good news:
Dr. Poplawski said he thinks Shelby is NOT having siezures because the nystagmus did not change after taking Keppra. He took her off the medicine immediately. He said that the abnormal brain waves and discharges were very normal based on her hydrocephalus. He also felt positive about that getting better as the shunt continues to do its job, and her brain adjusts.

So, again Dr. Poplawski was awesome, and he will now pretty much be our go-to guy with any brain questions we have. Its nice to have a doctor in Asheville for that. He was very positive about the "before and after" images of her brain, and said that he thinks the brain will continue to expand. He was also impressed with how well she holds her head up, and lifts it while laying on her stomach, because she is slightly hypotonic (meaning she has decreased musle tone)--he thinks this will improve with time as well. We will see Dr. Poplawski again after our next visit to Duke (in December) where we'll get another CT scan.

Our next step is to get going with Physical Therapy and Occupational Therapy. Of coure we will update as we learn more.

I called the neurologist's office at Mission Children's Clinic so many times this morning that I actually got a personal phone call from him around lunch time today. Of course Harding was pushing his truck in circles around me while talking loudly and Shelby was fussing, so it was difficult to concentrate on the conversation. Here is what I got out of it:

Dr. Poplawski said that it is very common for a brain shunt to produce an irritation that can cause seizures. Shelby's EEG showed that her brainwaves are slower in her right temporal lobe where the shunt is (ask expected). That and the abnormal electrical discharges that the EEG picked up put Shelby at a high risk for seizures. He prescribed the Keppra for her as a preventative measure because the medication has no toxic effects, no interactions with other drugs, and has very few side effects.

We have an appointment with Dr. Poplawski on September 30th, plus we're on the waiting list if he gets any cancellations before then. In the mean time, I don't think we will move Shelby to her room upstairs any time in the near future.

EEG News

Mission Children's Hospital called on Thursday afternoon to schedule Shelby's EEG for Friday at 1:00. We didn't expect to learn anything yesterday because we still didn't have an appointment with the neurologist (Dr. Poplawski). I took Shelby in for her EEG and the technician hooked up electrodes all over her head and monitored her brain activity for about 25 minutes. For part of the time, she placed a strobe light over her head to see if there were any brain reactions to it.

At 5:30 yesterday afternoon, a nurse from Dr. Poplawski's office called to say that the doctor had read Shelby's EEG and there were frequent epileptiform discharges (electrical activity in the brain) showing focal seizures in the right temporal area of her brain. She said Shelby Frances needed to go on seizure medication (Keppra) twice a day and she called it into the pharmacy. She said this medicine may cause some irritability and fussiness in Shelby while her body gets used to it and that they would slowly ease her into taking larger doses. I didn't get to talk to the doctor because he had already left for the day, so I told the nurse that we needed an appointment with Dr. Poplawski as soon as possible. I will be calling them first thing Monday morning.

We're worried and frustrated right now. Our baby is on major medicine. The neurologist obviously thought it was pretty important that she go on the medicine quickly, because he prescribed it to her before meeting with us and examining her. I wonder why no one suggested that we go to a neurologist sooner?

If anybody knows anything about seizures or seizure medication or neurologists (specifically Dr. Poplawski), please shoot us an email. We have no idea when we'll be meeting with him.

Developmental Visits and Vacation Pictures

Shelby Frances enjoying her first dip in saltwater:

Lulled to sleep by the sound of crashing waves!

Our sweet girl:
So, we had a couple meetings with developmental groups last week before we went on vacation to Gwynn's Island. The first group was Early Intervention Program (run by the state of NC), and they came to our house with a pediatrician, a physical therapist, and a case worker. The second group was the Olsen Huff Center (part of Mission Hospital). They both said largely the same thing: Shelby has good muscle tone, and is progressing nicely in a lot of areas. She holds her head up well, and grasps objects with both hands. She also makes a lot of different cooing/gurgling type noises which impressed the EIP folks.

They both said they did notice a slight imbalance between her sides (with the left being weaker), but it did not sound too major. The Early Intervention people recommended physical therapy once a month, and the Mission people said once every two months. I took it as a good sign that she needs it so infrequently. They also said the imbalance is something she could completely overcome even without PT, but that PT would be kind of a preventative measure.

The main concern or issue now is her eyes. She seems to be a little behind in terms of how well she focuses on and tracks objects. I will say that in the last week it really seems like she's focusing on our faces more frequently, and for a longer time. She still has the nystagmus, which can be caused by: reduced pressure, increased pressure, damage to optic nerves, non-clinical seizures, or it may not be a big deal at all. Interestingly, Tiffany's aunt Dearing found out that if you cover her eyes during one of her nystagmus episodes, she quits doing it immediately. Don't know what that means.

I think largely because of the eye issues, both groups recommended we see a neurologist. So, we are getting an appointment set up, and they will do an EEG to get an in-depth analyses of her brain activity. This appointment has me a little nervous, because I think we will get a lot of info from it. We hope it's good. Anyway, we will update after that appointment. In the mean time here is link about EEG's: http://en.wikipedia.org/wiki/Electroencephalography