I wish we were planning a vacation, but instead we are planning a trip to Detroit to see the famous Dr. Chugani. We go up Monday the 24th of August and will be there through the 27th. While we are there, Maddie will have a 24 hour EEG. To put the leads on there, they will swaddle her like this:
That is Trevor, Danielle’s precious son who was just seen in Detroit. I am dreading this as she always hates that part and being restrained (while speeding up the process) is probably going to stress her even more. Which leads to bigger seizures.
Then, for the last 6 hours of the EEG, she will have to fast because she is being taken Tuesday afternoon straight from the EEG to the first of two PET scans. That one (the FDG) is a relatively short PET. Then we will leave the hospital and go check into our hotel for the night. But she will have to fast most of that night too, because first thing Wednesday morning she has another PET scan (the FMZ). This one is longer, and they said we will be at the hospital til early afternoon. Then we’ll go back to the hotel and rest, until heading back to the hospital Thursday morning to finally actually have a visit with the good doctor. And then we fly back home that afternoon.
Sounds fun, right?
All of this is being done to find out if Maddie is a candidate for brain surgery. If they find that most of her seizures are originating from one location (a seizure focus), then theoretically they could cut out that part of the brain and either stop or reduce her seizures. I know it sounds drastic, but we have yet to find any real hope for seizure control with medication. We still have more to try, but with each med failure, the chances of success in finding seizure freedom get lower. She has been having seizures for over 7 months now and she has only regressed in that time. We have seen no forward developmental progress since she was 2 years old. So we need to see if surgery is an option.
Unfortunately, for most kids with Infantile Spasms, surgery is not an option. It is because these seizures are usually very generalized, meaning the whole brain is involved. And she obviously needs to keep alot of the brain in order to function. So we go with hope, but knowing we are likely to be disappointed. And that is the part that scares me the most. While brain surgery is scary, to me it is even scarier if that surgical door is closed, and we are stuck in the trying and failing medicines game that we are playing right now.
So we are optimistic, but only very cautiously so. I am also hopeful that even if she is not a surgical candidate, that Dr. Chugani, with all his IS knowledge, will point us in the direction of some further testing that may be helpful. Or that he may have other treatment ideas. We just need some new fresh thoughts on what to do for her. We love our Neurologist, but we just want to exhaust every option. Which he agrees with totally. So to Detroit we go…..although we are still waiting on the final approval from our insurance company…..hopefully that comes early this week so I have one less thing to stress about.
And for this trip, my mom will be accompanying Maddie and I. Brandon will still be in the California desert training. We came to the decision to go ahead and do this now so that if (a big if) she needs surgery, we might be able to do it before his deployment. The other week they offered us for the Detroit visit was his last week of leave before the deployment. And as much as he wanted to be there, that is not really the way we want to spend our last family time together. I can say without a doubt that we have had enough quality family time together in a hospital for a lifetime.
This trip could not come at a better time seizure-wise. For some reason, her seizures have been on the increase lately. Right now she has four clusters of about 20 minutes of seizures per day. Plus some other head drop seizures and single spasms. So seizures are not under control at all for her right now. More data on the EEG for the neurologists to work with I suppose……
Love to everyone,
Liz, Brandon, and Maddie