I got the phone call today from the neurologist’s office. Owen’s EEG, while improved from his last one (in 2012 when he was in non-convulsive status), still showed quite a bit of seizure activity. Of course his neurologist is out of the office for the next couple of weeks, and when I asked the nurse if we were supposed to be making any changes, she wasn’t sure. So she ran it by the other pediatric neurologist and he recommended we try a non-medicated approach next.
This is because Owen is already on 3 medications for seizures, and adding a fourth is very unlikely to make any difference. It’s also more complicated to find that many different meds that dont’ cause significant side effects or interactions. Ugh. Even though I knew this would likely be the case, it’s still hard to hear.
We did the Ketogenic diet for 9 months back in 2012. It had significant impact on his seizures, and we were able to get off of all meds. Owen also ended up with severe Pica and non-convulsive status by the time we said enough was enough.
So we are not interested in trying that diet again. But, there are others. A large trial was done looking at the Modified Atkins Diet (MAD) in Angelman Syndrome, and it showed favorable results. There is also another low-carb high-fat diet that has been trialed. While we wait for our follow-up appointment (which is not until the middle of March), I will have some items to research.
This neurologist also presented an option I haven’t looked into before. The Vagus Nerve Stimulator (VNS). I definitely need to look into this one some more and see if it’s been used successfully with children with Angelman Syndrome. I recall some talk of it on the Angelman Syndrome listserve I subscribe to, but I can’t remember details. From my brief research, it’s similar to a pacemaker, except for seizures and the brain instead of the heart. I also know that an elderly woman in our church has one, so I will hopefully be able to talk to her and find out her experiences with it.
We’re not entirely sure which route we’ll take. More research, and much prayer is needed before we make this kind of decision. Since Owen can’t talk and represent himself, it’s so important that we don’t rush into any decision. Especially one that involves surgery (the VNS) or complete lifestyle changes (a low-carb diet). It would be wonderful to ask his opinion on the matter, especially since he’s getting older. One of the struggles in raising a non-verbal child.
I will say it was a blessing to hear from the other neurologist. Sometimes I think that the doctors who see Owen on a regular basis tend to just group everything that is ever wrong due to the Angelman Syndrome. Having someone fresh look at his file always makes me feel a little more confident in what they say. This was the neurologist who recommended the 24 hour EEG back in 2012, and was key to unlocking a huge part of Owen’s symptoms back then. A second opinion is always nice, especially when Owen’s medical is involved! He’s got a complicated record, for sure.
So we’ll be spending the next six weeks or so looking into the various options presented. I don’t know for sure what route we’ll take, but my initial instinct is to try the MAD diet first before doing surgery. Kind of seems like the option with less intervention. But we will see what unfolds. I am very thankful that the Lord timed it so we have a little time to pray and research before having to make a decision!
Thanks for reading the update on my special little man!