Sunday, June 20, 2010

Redeeming Father's Day

Last Father's Day, we woke up happy and relaxed. I was well on the road to recovery from postpartum depression, Collin had started sleeping most of the night in his own bed, and we were going to celebrate Kyle's first Father's Day with blueberry pancakes for breakfast and a lunch with his dad and brother. We went and got Collin and brought him to lay with us for a while, and then he started doing that same strange jerking we had noticed the day before. It had been going on for some time, but seemed to be getting more frequent and forceful. Kyle was the one who said what we were both thinking: "I don't think that's right." For some reason I will never know, I opened my laptop, typed in "baby seizures", and our lives instantly changed.

The first video I saw was of a baby doing exactly what Collin had been doing for weeks, and in the comments, the person wrote something to the effect of: if your baby is doing this, calmly pack a bag and go straight to the closest children's hospital. We read the term "Infantile Spasms" for the first time and phrases like "catastrophic seizure disorder" and "poor prognosis" and "mental retardation". There was shock, lots of crying, and hard conversations. I couldn't stop telling Kyle how sorry I was that this had happened on his first Father's Day. He was sorry that it happened right as I was starting to heal. And then, somehow, we went on with our day. I have no idea how. I made pancakes. I served lunch. My whole self felt like skin after a burn - there's the initial jolt of pain, then the lull of numbness, and then the waves of actual burning start. They wash over and make it hard to think. I was sick to my stomach all day. Everything felt hazy from the burning.

The next day, we got in for an early EEG and didn't even make it all the way through before they had paged the neurologist on call (Dr. Awesome, thank goodness) and escorted us to express check-in. But we didn't know any of that yet on Sunday. On Sunday, we were just stuck with our fears and our grief.

So this Father's Day was very significant for us. The initial plans were to celebrate with some special activities, but then Collin's seizures came back this week, which makes that kind of planning tough. Instead, we made plans that turned out to be even better: we had the calmest, most 'normal' day possible. A special omelet breakfast, lots of down time together as a family, cheap lunch at our favorite burrito place, a diaper run to Target together, naps, and an evening at the pool.

And I just feel so, so thankful. I look back at our raw, terrified selves this time last year and can finally see the extent of growth that has happened since then: the priorities that have shifted, the insecurities that have shriveled up. Last Father's Day, we were being burned alive by our fear of what was to come, by our grief over losing precious hopes and expectations. This Father's Day, even though we still struggle, we are full of appreciation for our Collin, of joy over all of the things he's accomplished that we didn't know if we would ever do and excitement for new things he will show us.

And let's just be clear about how all of this came about. It's not because we're good people or because we worked so hard or are special in any way. This could just as easily have destroyed us. It was a gift. It was grace. It was God at work in people who were too broken to make it through the daily necessities, much less crawl up out of that mire onto solid ground again. And yet here we are, not on the other side but in the thick of it still, but living in hope and deep love for our precious son. We were able to reclaim this Father's Day because God brought good and beautiful things from horrible and crushing things. The more I experience, the more I become convinced that that's the only way this kind of change can happen.

Thursday, June 17, 2010

What Now

At some point yesterday, we decided to give Collin a regular dose of clonazepam every 4 hours for 24 hours to try to break his seizing cycle. Interestingly and unfortunately, it didn't have the effect we had hoped. Rather than knocking him out and stopping his seizures all together, Collin has continued to seize sporadically and is still having trouble falling asleep despite being very groggy and lethargic.

He started off this morning with 6 huge dirty diapers, which makes us think that this seizure trigger might have been digestive in nature, but even if that's the case it doesn't mean that the seizures will stop now. It seems like Collin's pattern is that once the seizures get going, they have a hard time stopping even when the trigger is long gone.

So the question now is what to do in the meanwhile. Do we continue dosing him with clonazepam and hope that the desired effect will kick in at some point? Do we abandon clonazepam and let his body work things out on its own (since we've seen in the past that it can...eventually)? Do we stop clonazepam, watch the seizures and only use the med for clusters? Do we talk to the neuro about other options? That one always makes me very nervous because it always feels like they are very anxious to 'start' a new med, which we're not interested in at this point. We're still thinking along the lines of 'rescue meds' - used only during spells of seizures rather than daily.

We are going to hang tight at our current ratio on the ketogenic diet, although I am going to experiment with a different fat source. We had been using ghee (clarified butter), but it is solid at room temperature (like coconut oil, which we tried in the past), so it separates out and never fully reincorporates, which isn't good for a blenderized diet that has to be very precise in its ratio of ingredients. For now, we found a good cream that isn't ultra pasteurized or homogenized and we'll use that as we investigate other options. Hopefully, his ketones will come back up in the meanwhile.

One of the things I hate so much about seizures disorders - and I actually remember thinking this the very first day I realized that Collin probably had Infantile Spasms - is that there are no good options. There are no even remotely easy decisions. For example, Collin has already stopped crying with these seizures. Is that the effect of all of the medicine or of the seizures themselves? Do we take him off of the clonazepam to see, risking more seizures, which may be the actual cause in the first place? We are constantly talking ourselves in circles trying to find the best of countless unsatisfactory options.

Tuesday, June 15, 2010

Regrouping

So, I have to say that I was a little blindsided by this one. Collin has been a little grouchy and grinding his teeth, but he's done that off and on for weeks. His ketones have been slightly down, but nothing drastic, and I've been tinkering with his fat sources to find something better suited to his body. He was starting to get into a good sleep cycle, he had been incredibly interactive and active and aware. I just didn't see it coming.

I took monitor duty again because I was so sure that we were going to have another good night, but I woke up at 3 am to a sound that I knew wasn't right. I looked at the video monitor and saw that he was moving, but couldn't tell what was going on for sure, so I went into his room. He seemed upset, but nothing else stood out, so I repositioned him and went back to bed. I heard more sound 15 minutes later and then at 3:30, I just happened to open my eyes at the exact moment that he was launching into a tonic seizure. I got to his room by the time he was done and had started crying.

By around 5, we had decided that the seizures were starting to cluster, so we have him 1 clonazepam and they stopped shortly after. This is huge, because it means that what we were hoping with the clonazepam wean has happened: he has become more sensitive to it again so we can use it as a 'rescue med' without having to fight his resistance to it. It also means, though, that the sedative effect of the drug has kicked back in. Collin slept until 10:30, tried to fall back asleep at 1, but had another seizure, and then fell asleep at 1:30 after another clonazepam and has been asleep ever since. I'm so glad his seizures seem to respond, but it's really hard when this time yesterday, he was smiling and laughing and starting to look at himself in a mirror and wiggling all over.

It had been exactly one month since his last seizure. He had ONE half pill left before his last wean was officially over.

We're not sure what we're going to do at this point. I have contacted our nutritionist at the hospital to see if she has any insights. I'm adding Miralax to his diet for a couple of days to make sure it's not a digestive issue. We're increasing his Tylenol again to make sure it's not a pain factor. Other than that, I guess we're just watching and thinking at this point. We're going to spend some quiet family time tonight recharging to make the rest of this week, whatever it brings.

Let me just say, though, that I am SO THANKFUL for this past month. It has been a true joy getting to see Collin's personality more and more and watching him starting to really respond to his NACD program, therapies, his environment, and people. Just yesterday during vital stim, we realized that he was telling us that he wanted more! What a thrill to communicate with my child. It was such a treat to deal with things like sleep schedules and crying and Collin talking too loudly in public places. I'm trusting that this will pass and that the next seizure free time, however long it ends up being, will be that much sweeter.

And...We Have Seizures

Son of a gun.

Monday, June 14, 2010

Fun, Fun, and More Fun

We had a weekend jam packed with fun and Collin hung in there like the champ he is. Saturday morning, Collin played with Daddy while I went yardsaling with Aunt Tess. That afternoon, we got to have lunch with our good friends, the Hollands, who were in town for the day. We ate Ethiopian, had some laughs (including Collin!), and then explored Creation Gardens downtown. Collin particularly loved the perishable food section of Creation Gardens. Maybe because of the cold air and bright colors. Who knows.

Saturday afternoon brought tacos and fun visiting over at Mimi and DeeDee's houses and then an early bedtime after such a busy day.

Sunday, we went to celebrate the first birthday of our friend Emily. Emily has Infantile Spasms like Collin and it has been a huge help to be able to walk through this thing with another family so close to our situation in so many ways. There was pink and purple galore, lots of kind people, and a beautiful cake. Emily slept through the whole thing and Collin talked (yelled) through it.

Sunday night, we capped off the weekend with our first trip to Lakeside, our neighborhood pool. Collin needed a little coaxing to get in the water at first since it was a little colder than he's used to at aqua therapy. Aqua therapy was a huge hit this week and we tried out some of the new moves we learned, plus some motor boat action that Collin couldn't get enough of.

And to top it all off, Collin slept basically through the night for the first time in recent memory, which means all three Kratzschs got a good night's sleep. A perfect ending to a smooth and fun weekend. We are so, so grateful.

Wednesday, June 9, 2010

No Rest for the Weary

I thought things were getting better. It seemed like there were a few nights when Collin was getting up less, but maybe I was just so exhausted that I was sleeping through more.

Last night, Collin got me up 1 - 2 times an hour from 10pm till 7am. And those were just the times I actually got out of bed. My handy dandy new video monitor saved me quite a few unnecessary trips. But I'm still feeling a little on the crazy side this morning.

We're giving the clonazepam every 36 hours through the end of this week, then every 48 hours, and then we'll be done. I'm hoping that the slow pace of the wean will allow his body to set up its own schedule with minimal discomfort, but I have to say that I'm tempted to just stop so he can go ahead and adjust and get it over with. I'm considering melatonin to help with the process. Lots of kids with seizure disorders use it at some time or another. But the thought of adding something new makes my shoulders tense up to my ears, since you never know what will trigger seizures with Collin.

We have our first aqua therapy session today, which I was super excited about until last night happened. I wonder if they have an option in which mama takes a nap on the side of the pool.

UNRELATED SIDE NOTE: Sunday evening, we picked up burritos and took them to the park to enjoy the unusually beautiful weather. Kyle sat with Collin in the car while I picked up the food, and as I was on my way out the door, I heard someone say 'Boo.' I looked around in confusion for a minute until I realized that it was our beloved neurologist, Dr. Awesome. I hadn't recognized him in his t-shirt and ball cap. So, that is the kind of guy he is. He could have let me walk by and I never would have known, but he recognized me, went out of his way to stop me, introduced me by name to his lovely daughter, and proceeded to ask detailed questions about Collin. Who knows how many hundreds of patients this man has right now. And that is reason number 56 why his name is not an exaggeration.

Saturday, June 5, 2010

More Late Night Adventures

Around 11:30 last night, I was awoken by a sound I couldn't quite place. It was definitely coming over the monitor. I lay perfectly still and tried to figure out what I was hearing (and this is why we finally broke down and ordered a video monitor this week). It sounded like a little grunt. And it was coming rhythmically. And any rhythmic sound chills my blood in that special seizure way. I jumped out of bed and raced into Collin's room as quietly as I could and tried to assess the situation. He was facing away from me, still grunting, and tensing his arms when he did. My heart sank and I reached to get him and hold him during whatever these new seizure were.

Except I saw right away that they weren't seizures. His face was puckered up and his lip stuck out and his eyes screwed shut. He was crying.

When Collin lost his cry back during our horrid course of Topamax, I didn't even realize it had happened at first. And once I did, I would have been sad about it if I hadn't been so overwhelmed by all of the other devastating aspects of the situation. Starting earlier this year, we saw occasional cries during the toughest situations - mostly in the hospital - but it was never long or consistent. And then recently, he's been crying at certain kinds of pain (usually when something is being peeled off his skin) or when waking up from a heavy nap. Even then, it's pretty quiet. You really have to be able to see him to know what's going on (as with everything else).

So my initial reaction last night was just confusion. Something must have been really wrong for it to wake me up and last this long. My mind raced, but I couldn't come up with anything. Kyle and I ran through several emergency scenarios, but none of them fit. And eventually, it came down to this: he was uncomfortable. Maybe cold, maybe teething, maybe lonely. Maybe sad because he had chewed his favorite pacifier in half in the night (that's a whole different story). Who knows? But nothing major. And that made it that much better.

I realized at one point that it was the first time since he was born that I've been able to comfort my crying baby in the night, since I was out of commission from the PPD between our return from the hospital and his Infantile Spasm diagnosis. Don't let the complainers fool you: it's a sweet, sweet thing.

After spending some time in bed with us, getting an in-tact pacifier, some orajel, and water, he calmed down and didn't object to being back in his crib. Of course, when he woke me up at 3:30 (and 5:00, and 5:30), he was laughing.

Tuesday, June 1, 2010

Golden Slumbers

Collin is not sleeping these days. Well, not at night, anyway. At first I thought it was the full moon or something (which it was), but then the trend continued. There were a couple of nights when I got up almost every 15 minutes all night. Seems like I would just get up and do something productive, huh?

So, we're thinking it might be related to the weaning of his last seizure medicine, clonazepam. It's a sedating medicine and he has been on varying doses of it for almost a year, so a wean is bound to affect his sleep cycles. He's down to half of a pill once a day, and based on my experience I think that the end of a wean is the hardest. So, after this week, we will space the half pills out to every other day, every third day, etc. to give him as much of a chance as possible to adjust with minimal side effects.

At least he's not upset while he's awake. On the contrary, he gets talking or squealing and can't get calmed down. Here's some video from this weekend, when we discovered that he thought the sound of whipped cream spraying was hilarious. First, we emptied almost the whole can on our plates and then Grandad figured out how to make the sound on his own.

This, of course, is right before bedtime.

Funny Stuff from Annie Kratzsch on Vimeo.