Sunday, October 08, 2006

What we found out...
We met with the doctor on Friday afternoon to find out the results of all this testing. Of course, by the time we met with the doctor, Sophie is sleeping so incredibly soundly that there was no waking her up. We even had to lay her on a table while I held her eyes open and the doctor shined a light in them and she did not even move. After the doctor examined her, he started talking about these statistics on how 85% of the babies he sees with Infantile Spasms (he generally sees only cryptogenic cases in patients outside Detroit - in other words, he usually does not see babies that fall under the symptomatic cases in which they have some kind of brain damage or known metabolic disorder) fall into a category in which he can help through medication or surgery and the other 15% fall into a category that he cannot help. Then he said out of the 85% he can help, 20% of them are surgical candidates. I felt like he was going on and on and on... while I sat there wondering where he was going with this. Which category did Sophie fall into? What is all this talk about brain surgery? In what felt like eternity (which in reality was only a few minutes), he said that Sophie "might" fall into the 20% category of surgical candidates. Is this suppose to be good news? Brain surgery - how can this be good news? Yes, he "may" be able to help Sophie, but how is having brain surgery good news???

Why Sophie might be a surgical candidate... If the brain ONLY has abnormal brain matter on ONE side of the brain, then she would be a surgical candidate. In other words, the seizures are only originating from one side of the brain. The FDG PET scan shows that Sophie has some abnormal brain matter (cortical dysplasia) on the left side of the brain. She only "may" be a candidate for surgery because the doctor was uncertain if the right side of the brain had abnormal brain matter. Sophie is still very young and her brain is still developing. Therefore, what may appear normal on the scan now, may appear abnormal in the future once she is a little older. Currently, the EEG shows that her seizures are multi-focal but that does not necessarily mean they are originating from both sides of her brain. Our local neurologist told us that a PET scan was not necessary because he did not believe that Sophie was a surgical candidate since her seizures were multi-focal on the EEG. Brandon and I have learned so much from this new neurologist.

More about her EEG... As I already said, she is having multi-focal seizures. She is still having spasms along with myoclonic seizures (this is something new we learned). Her background rhythm is normal but she has abnormal brain wave activity 24 hours a day.

What next... We keep trying new medications to "buy some time" until Sophie is a bit older to run some more tests. The doctor recommended that we stay on 1,000mg/day of Vigabatrin for one week and then increase it to 1,250mg/day (500mg in the AM and 750mg in the PM) for two weeks. If Vigabatrin does not stop the seizures (it appears that it currently is doing absolutely nothing for her seizures but is completely disrupting her sleep cycle), then we start Zonegran. All the while, we are suppose to wean Topamax at 25mg/week. Yesterday, we dropped the Topamax down to 100mg/day (25mg in the AM, 25mg at noon, 50mg in the PM) and her seizures were worse. So today, we increased her Topamax back up to 150mg/day (that is the dose we were at when we first started Vigabatrin 10 days ago). Oh, the decisions Brandon and I make on a whim and the drugs that we push into Sophie's body that does who knows what to her (increases the amount of GABA in the brain, or damages the retinal nerve fiber responsible for her periphial vision, or ???).

Once we buy some time (3 - 6 months)... We go back to Detroit to get a Flumazenil (FMZ) PET scan and a 3 day video-monitored EEG (yes - 3 days). The doctor will then determine if Sophie is truly a surgical candidate.

If Sophie is a surgical candidate... Sophie will most likely have brain surgery by the time she is 2 years old. They will put electrodes on the surface of her brain in and around the areas that they will operate. They will then send electrical currents to stimulate the brain to map out the motor cortex which will take about 3 days. Then, they will operate and remove the areas of the brain that are abnormal making sure to stay clear of the motor cortex. Having this surgery does not guarantee that Sophie will become seizure free for the rest of her life but it does increase her chances. Currently, the left side of the brain that appears abnormal is what controls speech. Once this area is removed, the right side of the brain will take over and learn how to control speech. It is so amazing what the brain can do. How can you remove part of your brain and still be okay?

So what now... We pray that the abnormal area does not get any larger (as the smaller the abnormal area, the less amount of brain they will remove). We research, discuss, get more opinions, run more tests and then decide if brain surgery is an option for Sophie and whether or not we want her to have brain surgery. With all this said, even if Sophie is a surgical candidate, we have to weigh the risk of surgery with the long-term benefits. I just cannot imagine my baby girl having brain surgery.

4 comments:

Great Aunt Barb said...

I know being bombarded with all this info leaves your heads spinning...But in the big picture I really feel this had a positive outcome. Sophie's obviously in the 85% group he feels he can help, and most likely in the 20% group that has a surgical option if the drugs don't seem to do the trick for her. As scarey as that is, it's an option that so many others never have!! And then there is "Our Sophie" who is the biggest positive in the equation. Just as she surprised you when you found her sitting up...I think she will never cease to amaze you!!
She might be just a little girl but she is one big miracle!!

Lots of love and see you soon,

Barb

Shelli said...

Sophie is so adorable. I read a bit about her on the IS Yahoo group. I just wanted to let you know that. I'm so surprised and excited for you that she has done so very well developmentally through all this.

My son, Conner, just turned 1 and has Down Syndrome. He was diagnosed with IS in June. He has been SF now since early Sept. He's doing so much better now developmentally - I can't believe it. Obviously, he has slow development anyway, but it really was at a major standstill when he was dealing with the seizures.

I'll say an extra prayer for your sweet little Sophie.

Shelli

Anonymous said...

What a trooper Sophie is and her great personality totally shows through on the pictures you posted! I think it just shows what great parents she has that she is getting through all this with a smile on her face.

We're looking forward to seeing Sophie in person at her big party!

The Soells

Anonymous said...

Just wanted to let you know we are watching and praying for you all. Jason keeps us up to date. I showed the girls Sophie's pictures getting her test and they both felt sad for her to have all that glue in her. You are both so strong and doing what is the best for your baby. Love to you all- The Sonas