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Girls follow up day at UCLA - Video EEG results

Posted Jul 19 2010 11:14pm
Jenelle and I had follow up appointments today at UCLA. Amazingly, I managed to schedule both appointments for this afternoon - a feat in itself! I had a blood draw first, then we met with Dr. Shields, followed by my appointment with my oncologist Dr. Territo. Good news was the result all around!

First, we met with Dr. Shields to discuss the results from Jenelle's video EEG in June. If you recall, we were concerned that Jenelle was having spasm seizures again, which could have put us back on some nasty meds. Dr. Shields said it was an urgent question that needed to be answered, and the Video EEG ruled out any instance of spasms. Some of the physical things we were seeing in Jenelle during seizures and when waking were definitely not spasms. That was a relief to hear.

The other good news in the EEG results were that we captured a few of Jenelle's "staring" absence seizures (also known as complex partial seizures.) Of course, Jenelle always has to be different from the norm. While her seizures look like classic absence seizures (staring, smacking lips, drooling and picking of clothes or skin with the hands during the seizure) Jenelle's absence seizure look more like a generalized seizure on the EEG. I know that sounds confusing, and it is. To make it easy for everyone, the EEG confirmed seizure activity, but thankfully it was not bad as we feared.

So where do we go from here? With a child like Jenelle, who is obviously always going to have seizures, we need to determine the best course of action to take without hindering her progress. Yes, Jenelle has had too many seizures in the last few months; two trips to the ER by ambulance are two too many. But, we always have to focus on seizure control as opposed to trying to be seizure free. Jenelle is progressing, developing and doing well. And, seizures are a part of her daily life. Do we want to risk her progress by trying to obtain something that isn't realistic? The answer of course is no. We will only be at that point should we find that Jenelle starts losing skills because of her seizures.

As for her medications, Jenelle is already almost to the max of the drug Felbatol. This means, there is no room to increase the dose. Dr. Shields has been studying a new drug that has recently been approved for use in patients with Lennox Gastaut Syndrome. It is called Vimpant, and apparently it works well on complex partial seizures. He wants to give it a try to see if it can make a difference, and help reduce the absence seizures (also called complex partial) we are seeing in Jenelle. Vimpant is only approved by the FDA for children with a diagnosis of LGS. We may have some trouble getting it, so we are not starting right away (thought I have a prescription to get the process started with our pharmacy.)

In the mean time, we mentioned that Jenelle's behavior of late has been a little worse. For those of you who know her in person, Jenelle is very strong and very active. Lately, she has started to kick and pull her hair and bite. Obviously, these are not behaviors we want to leave untreated, so we are going to increase her Risperdol until we can get the behavior under control. Apparently, we have a lot of room for an increase on that medication. Once we reach a good dose to control her behavior better, we will then start our wean onto Vimpant. We see Dr. Shields again in early November, and that should be good timing wise to see what effect, if any, Vimpant has on Jenelle's seizures.

Our focus in the coming months will be to make these changes in medication with as little disruption to Jenelle's daily living as possible. Please keep her in your positive thoughts and prayers that things so smoothly.

As for my follow up appointment today, my numbers (from the blood work) are good and I am still cancer free. I haven't updated in a while because I got sick just before 4th of July. On June 29, I left work with a sore throat. My blood work from the week before showed a drop in my neutrophil and white blood cell count. I spoke to the nurse and she told that I could be getting sick. The next morning I really felt horrible and decided to stay home. I called the nurse again and she asked me to have my blood work done again so she could make sure my numbers hadn't fallen. The numbers were the same and my neutrophils were at 800 (remember anything below 500 and I get a lovely stay at the hospital). They had me stop my daily chemo regime. The next day, I started running a fever of 100.7 (anything over 100 for me is considered a fever, especially when my counts are below 1,000.) The doctor put me on a Z-pack and told me not to return to work. After a few days on the antibiotic, I started to feel better, but still very fatigued.

Work has been extremely busy of late, and that hasn't really helped me rest much. Just when I think I can start to take on more, my body find a way to remind me that my health is still fragile. Brett has been wonderful and is giving me some much needed rest at home. Baseball has kept us busy with the All Star Game and the festivities surrounding it last week. I have some fun photos to share soon. Jack's travel ball team that Brett coaches has had two tournaments out of town. While it is fun, I am saying no to certain things like Angels games and after game parties with Jack's team so as not to over do. I remind myself that just a year ago, I did not have the strength to do nearly as much as I do today. I try to remember to do one thing at a time, and try not to overdo.

So good news all around for the Curran girls. I do have many fun photos to share, but right now my body is telling me to get some sleep as tomorrow is a busy day at work. Thank you for the continued thoughts and prayers. I'll keep you posted!
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