Another EEG...

I'm anxious. Tired. Just feeling overall gloomy. In about 7 hours we will be leaving for the hospital for Sophie's 24 hour video EEG. I hate staying the night in the hospital. I hate the thought of being confined to a hospital room. I hate the thought of the tears that will be rolling down Sophie's face as the leads are put on her head.

It is going to be a gorgeous day tomorrow. And we are going to miss it. And it makes me mad. Then I think of Zoey and so many other children that have long extended hospital stays. I think of all the gorgeous days they miss. It is not fair.

But we are suppose to be grateful that there are hospitals for our children to go to...to become well. And I am grateful. Just sometimes, there are so many more mixed emotions that go along with it. But, between all of Sophie's hospital visits and all the testing, nothing has made her better. She continues to have seizures everyday. We are now at 600mg of Banzel (we increased to 500mg last Wednesday and 600mg yesterday). Her seizures are not any better. Maybe even a little worse. They are longer. Lasting up to 10 seconds per seizure. But she does seem to have a bit more clarity when she is having a good moment. It doesn't make any sense.

It is hard for me to let go. To know that I have no control. I just try to do my best in getting Sophie the best medical treatment possible. But ultimately I must leave things up to Him. To enjoy all the great things that Sophie does do and not dwell on the medical issues. But it is hard. It is hard watching your child suffer.

So if anyone is in the area and has any desire to come by and say hi...we will be there...just give us a call on our cellphones. We will be counting down the minutes until we get to enjoy some of the gorgeous weather that has come our way.

Testing update...

So I talked with Ruth (Dr. Chugani's nurse that knows everything and anything about the surgery process) last Friday. The only test worth repeating right now is the 24 hour video monitoring EEG. Until the EEG shows a focus, none of the other test matter. Even though all the other tests show only left sided abnormalities, there is no way of knowing if that is truly where the seizures are originating until the EEG shows it. As all the other tests are just not enough evidence to go forward with surgery. So after Ruth discussed it with Dr. Chugani, they are okay with us having the EEG done locally so we do not have to travel out of town. I spoke with Sophie's local neurologist last night and he is going to set everything up. He also brought up trying Banzel (thank you Jen for mentioning that to me in one of your comments or else I would have been clueless). So we are now leaning towards starting Sophie on it. It is just a matter of whether we should start her on it now or after the EEG.

And the results are...

We are still waiting. But we are one step closer. We met with Dr. Chugani on Tuesday morning before the AMT PET scan. He had the results of the MRI....

"...Slight asymmetry noted in the left frontal and parietal lobes which is smaller than right with associated blurring of the gray-white matter interface in the left frontal lobe may represent underlying cortical dysplasia..."

This gives him one more piece of evidence that the brain abnormalities are only on the left side. The PET scan results from last month showed abnormalities in the left parietal, temporal and occipital lobes. I hate that it is showing abnormalities in a new area of the left hemisphere BUT at least it is still the LEFT hemisphere.

With this new evidence, Dr. Chugani is GOING TO PRESENT SOPHIE'S CASE TO THE SURGICAL COMMITTEE on October 27th as long as the AMT PET scan does not show any abnormalities on the right hemisphere. Surgery is tentatively scheduled to begin on November 21st.

I've lost count...

Sophie has taken so many plane rides in the first 3 years of her life that I can't even remember how many times it has been...over a dozen round trips. Unfortunately, most of them are medical related. As so for our next trip. We are headed back to Detroit for some more testing in two weeks.

We have received the official reports from our last round of testing. Here are some bits and pieces...

The PET scan showed a mild hypometabolism of the left parietal, temporal and occipital cortex. The right hemisphere appears normal. The basal ganglia thalamus, brainstem and cerebellum showed a normal distribution of glucose metabolism. The gyri in the left posterior cortex are not very well defined compared to those on the right side. The architecture suggest cortical dysplasia. The right hemisphere abnormality is no longer present (very, very good news).**

The background activity during the awake state consisted of posterior dominant alpha rhythm at 8 Hz, which was bilaterally symmetrical and reactive to eye opening and eye closure (meaning the background rhythm is normal for age). During sleep, sleep spindles were seen bilaterally (don't know what this means). Hysparrhythmia was also seen during the sleep segment (that is bad...very bad). There were frequent right spike and wave activity along with independent left parietal-central-temporal spike and wave activity. Besides the right and left parietal-central-temporal activity there was also diffuse spike and wave activity. Besides these there was also temporal intermittent rhythmic theta wave activity seen in right and left side independently. Two types of spasms were captured. One was atonic spasms characterized by head nodding and the second was tonic seizures.

That about sums it up.

**Initial PET scan at 11 months of age stated the following...PET scan showed a large area of decreased glucose metabolism in the left hemisphere involving portions of the parietal, occipital and possibly frontal cortex. There is also a suggestion of a right parietal abnormality.

More about our hospital stay...

Sophie did great for the rest of the EEG. The head wrap stayed on this time. She slept through the night. A nurse came in at 6:45am to start her IV. She was a wonderful nurse and I couldn't thank her enough. She started the IV in ONE POKE!!! Amazing!!! She was in and out of there quickly and Sophie was back to sleep within minutes.

We were then discharged from the hospital at around 8:30am and headed down for the PET scan and to once again be taped* down to the table for the EEG. They only had to add an additional 4 electrodes to her head for the PET scan EEG but she had to stay taped down until the recording was over. Though she seemed more traumatized with these 4 than the original 28 they put on her the day before. She was then injected with radioactive tracer isotope and then recorded for 30 minutes on the EEG. All the electrodes were removed and she was then sedated for the PET scan. She did absolutely wonderful with the sedation. She was groggy when we left the hospital and we carried her back to our housing where she took about a two hour nap. She woke up happy as can be.

We then decided to drive over to Windsor, Canada for a late lunch...it is only a few miles away from where we were at. No problems getting into Canada but coming back into the USA was another thing. To make a long story short...the Department of Homeland Security picked up the radioactive isotopes in Sophie's body and after about 30 minutes we were given clearance to leave.

We then met with Dr. Chugani the following day.

* Being taped down in this pictures looks pretty barbaric. I actually ripped off the tape towards her feet because it was so tight I thought it was cutting off her circulation. For the initial electrodes they put on, the EEG tech did not wrap her this tightly. I had to convince both EEG techs to not wrap up her arms since she needed to suck her thumb. They were both hesitant but soon realized that it was for the best. Though could you imagine having both your arms and legs taped down and not knowing what is happening to you???

More testing...

We leave this Saturday for Detroit. We are taking Sophie back up to Children's Hospital of Michigan for another PETscan, 24 hour video EEG, and an appointment with Dr. Chugani. My heart is already breaking for Sophie. It is pure torture for her to get the leads put on her head. It brings tears to my eyes to think that I have to do this to her. I am so dreading even packing for this trip but I am also so anxious to find out the results of the PETscan. It will just give us a better idea of what we are dealing with. Maybe give us some answers.