Gideon is having seizures.
They aren’t your typical seizures that you see in movies, where the person is shaking, with eyes rolled back. Gideon’s seizures look more like myoclonic seizures.
Not all kids with Gideon’s disorder (PBD) have seizures, although many do. We were hoping we would be the “lucky ones” who didn’t have to deal with this especially since he hasn’t had any in the first 3 years of his life. However, after an EEG last week, the neurologist confirmed that what Gideon is experiencing are in fact seizures.
I’m still learning about this part of his disorder, along with something else called adrenal insufficiency (which apparently is also affecting my son right now). So as I explain all this with my limited knowledge, please forgive me if I sound stupid (especially to those of you who are much farther along/knowledgeable in this process).
I recorded that video of Gideon’s seizures about 2 weeks ago. For a couple of months now, Gideon would have these random moments in the morning where it looked like he was “falling.” It reminded me of the moro-reflex. I didn’t think much of it at first because it only happened one or two times when he would wake up. I thought maybe it was low blood sugar (Gideon isn’t always the best eater). However, over the past few weeks we’ve noticed these episodes have been increasing and clustering in the mornings and upon waking from his nap. So we went to see the neurologist.
This was not a fun visit. We love our neurologist. Dr. So is the one who actually was able to diagnose Gideon, when all the other specialists were scratching their heads. We didn’t know this 3 years ago, but Dr. So apparently had a patient 6 years ago that was a true Zellweger baby and so he had a hunch as to what to test for with Gideon.
Our meeting with him was depressing. He gave us all our options for treatment of seizures. Unfortunately, all the treatments seem to have a negative impact on parts of Gideon’s body that are already compromised because of the PBD. For example, there are certain anticonvulsants Gideon cannot be on because it would further compromise his liver. Or if we tried a really high dose steroid, it would speed up Gideon’s osteoporosis and further compromise his already fragile/weakened immune system.
I’m not saying we don’t have any options, we do. But the more I look into each of these medications that will save his life one way, ultimately they will compromise his life in another. Basically I feel like everything comes down to this question:
How do I want to watch my son to die?
With the help of his endocrinologist and the approval of his neurologist, we’ve made the decision to try and treat Gideon’s adrenal insufficiency first with the hopes that the seizures will stop once that part of his disease is treated. It’s worked for some PBD kids, but not for all. To treat the adrenal insufficiency, they use a low dose steroid called sol-u-cortef. He’s been on it for a few days now and so far, we’ve seen a slight improvement.
If that fails, the neurologist is open to whatever we want to do. He told us we could try a specific anticonvulsant that I cannot remember the name of and he also gave us a website to look into called Realm of Caring.
This website is pretty interesting. From my limited understanding, to get CBD oil in Texas you have to be a part of a research study and for now, the wait list for those are a mile long. However, this website apparently helps parents like us get access to medicine like this for people it’s been proven to help. I realize this is highly controversial and I’m not looking to start a debate over it. I just want to look into all the options for my son. From what I’ve read so far, this seems to have the least amount of side effects and it’s been successful for some of the kids with PBD.
Overall, this is a new season of life for us and it couldn’t have come at a worse time. With baby number 3 on the way, I really don’t want to deal with this right now. I’ve spent the past week prayerfully in tears over what to do for my son. Because no matter how we treat this (and even if we didn’t treat this), the outcome for our son is the same…
So how do we move forward from here?
Kevin and I have decided to continue researching our options and making changes as necessary for Gideon’s seizures as well as any other problems that arise.
As for our self-care, we are weary and worn, but God’s grace continues to be sufficient. We have so much love and support around us. Our family, friends and community group have been nothing less than amazing. So even though we are tired and even though this sucks, God is working even this for good.
Thanks for your continued prayers for our son and growing family.
I’ll leave you with our family’s theme song.