keeping my cool

Throughout this whole ordeal with the baby, and the continued ordeal with the baby, I've heard so many people say something to the effect of: "You're so calm through this". There certainly have been tears, but for the most part, yes, I do think Husband and I have done a pretty remarkable job of keeping our cool. There are two reasons for this:

#1: We have an amazing support system around us.

#2: We don't have a choice.

If you are struggling - with your own diagnosis, with the diagnosis of a loved one, with postpartum depression, with a string of bad days that have you down for no apparent reason - seek help. You do not have to do this alone. Asking for help does not mean that you are weak. It shows how strong you are. Just because some people appear to keep their cool does not mean that you have to, as well.

Here's the deal with my son's Lennox-Gastaut diagnosis and my apparent calmness: I realize that it sucks and I have mourned (and continue to mourn) the fact that my little dude may never have a normal life. But right now? He is doing amazing. He is defying the odds. His last several EEGs have shown remarkable improvement. He is developing socially, physically, verbally, and mentally at a steady rate, roughly a year behind his actual age dictates he "should" be. I realize that this could stop at any moment, he could start having a different type of seizure, or he could stop responding to his meds. Yes, it would be easy to dwell on that. I read stories about LGS children who develop fairly normally until the age of four or six, and then they stop, they regress, and their whole treatment plan has to be reevaluated. Sometimes the doctors just aren't able to get it under control. It doesn't mean they aren't good doctors. That's just the nature of this diagnosis. I am well aware of the fact that could happen to us.

But why would I want to dwell on it? Worrying about the future does nothing but rob me of the joyous present. And friends: there is so much joy to be had right now.

There are mountains to be climbed...

...meals to be eaten...

 ...books to be read...

and love to be shared.

These crazy little munchkins are raising a mommy who is present in today. Go hug a loved one.

lennox-gastaut syndrome: 101

I recently shared some information about infantile spasms, Baby D's first diagnosis. In November of 2018, we learned a scary truth. His infantile spasms had developed into something new: a rare and serious form of epilepsy called Lennox-Gastaut Syndrome (LGS).

The absolute best resource I've found for learning about LGS is this site. It gives you a ton of information in a way that is easy to understand. I really don't even need to write this post at the risk of being redundant, but I figured it might be good to make things a little more personal. When you can put a face with a diagnosis, it gets real. So I'll give you the super abbreviated version and this face to go with the diagnosis:

LGS is a rare seizure disorder, occuring in just 1-4% of all childhood epilepsy cases, or .1-.28 people per 100,000. A person with LGS can experience different kinds of seizures.  While Baby D's have all looked like his infantile spasms did (like this video), that could change at any time. Read about the different kinds of seizures here.

Because there are several different types of seizures and because they can change, treatment is challenging. One medication can be working really well for awhile, and then it can suddenly stop. We were warned of this the first time we spoke with his neurologist. He explained it by saying that treatment of LGS isn't necessarily a straight path. You don't try one medication because that's "the best" one and the move along a defined path from there. You aim for better each time. It's basically a very educated game of trial and error.

So what does treatment look like now? For us, at the time I am publishing this, Baby D takes a small pharmacy of medications each day: three that are specifically seizure meds, two dietary supplements, a multivitamin, and melatonin because he has trouble sleeping. I don't know that it actually does anything, but if Baby D with no melatonin sleeps even worse, that is not something I want to experience. Also, fluoride drops, because his teeth are in rough shape. I'm pretty sure this is an indirect result of the pharmacy that he ingests on a daily basis. I put so much awful stuff in his mouth, that he doesn't trust me with something like a toothbrush. It's a battle, and one that I am not winning at the moment.

In addition to the medication, we have physical and occupational therapists who come to our house each month to work with Baby D. We are so fortunate right now that he is progressing as well as he is. He's definitely still behind where a typical child his age would be, but he is catching up and gaining new skills very quickly.

So what's the prognosis?
That's a loaded question. The short answer is that we have no idea, so we're enjoying these days of progress. The long answer: he will likely have delays, possibly significant ones. He could be doing very well, and then suddenly stop responding to his meds. He could start having different kinds of seizures and we could have trouble finding the right combination of meds to control them.

"With LGS, some children have no developmental problems at first. But, with time, these problems may begin to appear."

"Unfortunately, there is no cure for LGS, so freedom from seizures and normal development is very unusual."

So...we don't know. Drop seizures are very common, so he may need to wear a helmet to protect himself if he starts having those. Emotional, behavioral, social, physical, and academic delays, to some degree, are likely. Again, the website above does a great job of spelling out the different possible outcomes. We're just taking it day by day and enjoying the good ones, knowing that they are not guaranteed.

What about non-pharmaceutical treatments? Wouldn't you like to try something more natural?
I would love to, but this is my kid's brain we're talking about, so I'm going to trust his treatment to those who have devoted their lives to studying it. I addressed this in my infantile spasms: 101 post, so I will refer you to that.

So what now?
Now I publish this post, go read in bed, and thank God for another wonderful day. Then I wake up in the morning (and several times in between, because Baby D does. Not. Sleep) and continue to love on my little ones. I know it could take a horribly challenging turn at any moment, but dwelling on that is unproductive. One day at a time.

Good night, friends.