He said Reagan looks good and although he wants to continue to see her periodically, there is nothing overly concerning. He did say that he's surprised we haven't considered tapering her off her epilepsy medication naturally by weight to see what happens. I'm sure that will come up again when we meet with the neurologist, but as I've shared, her scans still show significant epileptic activity so it wasn't advised.
Dr. Myseros said Cole looks good and we talked about when he should have his next scan. He'd like to have him scanned again before our next visit in the Spring. Although we've been on this journey for over 8 years, I am always learning new things about my kids' diagnoses. He shared a story about a patient who hasn't seen him in 8 years and although had no symptoms he decided to have her get a CT to check the shunt function. The scan showed the tubing was broken despite not having any symptoms. It gave me hope to hear that she may have become shunt independent. Although he said he would never remove of the valve in the brain (unless it's malfunctioning), he will be conducting surgery to remove the tubing in her stomach and leave her "open" for a few minutes to see if anything is draining into the peritoneal cavity. He said it is sometimes possible for the tubing to build up a "barrier wall" that allows the fluid to drain through tissue build up so that it looks like you are shunt independent but actually there is still drainage. Anyway, the point is that he said there are significant long term complications from all that tubing in the body and it should be removed if it's not needed. And BAM...there's the kick to the gut needed to shift you from hope back to reality. But we live a life knowing his rate of shunt failure is 99% in the first 10 years so this isn't a surprise. We are very blessed that Cole hasn't had any issues and pray that continues.
On to neurology...as you may remember, Cole graduated from his neurology appointments in the Spring but Reagan continues due to the epilepsy medication. It was a good appointment and nothing new to share. He said she looks good and is still within the therapeutic level for her medication so we decided not to increase it. I did mention Dr. Myseros's question and he said that he believes in being more aggressive. If she's ready to come off the medication he prefers to wean down over a 6 week period rather than coming down naturally based on weight. He said he would like to have another EEG in the Spring before the next appointment and consider taking her off next summer. I am definitely not going to get my hopes up, but it gives us something to look forward to. Unfortunately, even if she appears to be seizure free they can always resurface like they did last time. It may be weeks, months or it could be years. Being seizure free for 5 years definitely increases the chances of being able to consider coming off the medication except that the statistics are very different for cases with structural causes for the epilepsy.
Just as Cole could have a shunt malfunction any day and end up in brain surgery again, we've come to accept that Reagan will always face epileptic recurrence. And while we so desperately want her to be independent of the medicine, I sometimes wonder if it's better to know she's medicated and safe. The thought of letting her go swimming or climbing on a jungle gym not knowing if that will be the moment she has another seizure will bring with it another set of concerns. And yet I worry about her being able to drive or bear children. And although this is a long way off, and new medical developments may occur, it's hard to think about her being told she can't have her own children. And so we continue with this thing called life and take every moment to enjoy what we have today not knowing what tomorrow will bring.We were lucky to have a beautiful day to cut down our Christmas tree. It's a family tradition for us to go the day after Thanksgiving. Despite fighting over who got to pull it to the bottom of the hill, we had a great time and had a fun afternoon decorating it. I'm very lucky Reagan loves putting on the ornaments as much as I do! We also got their school pictures - they look so grown up!
