Routines? Nah, choose personality!

I like routine. Having a baby on medication to try to control and stop IS, sort of blows a routine into pieces most the time. We talked with his neuro’s office last Tuesday, and since the start of his medication (Sabril 250mg 2x/day), he is still having spasms. So, his doctor decided to double the dosage to 500mg 2x/day; basically wants to nip the spasms in the butt, getting them to stop as soon as possible. A week into the double dosage, waking up and going to bed is still fairly normal and sleeping all (or most) the night…thankfully! Timing of meals is close, minus the fact that his appetite has started to increase. He’s started to eat some more chunky foods, which he’s been a fan of, probably half the reason because it’s more fun to make a mess with!

(After spaghetti tonight)

But the tiredness and crankiness is what is keeping us on our toes as to when those come and go. This weekend was a bit of a struggle because he was tired, but got himself so worked up multiple times, he couldn’t sleep, even though that was the problem! We took him swimming on Sunday at the hydrotherapy pool in Bellevue. He floated around like a fish, who tired rolling over to his side while floating on his back, and so relaxed at some points it looked like he was going to fall asleep right in the water. He certainly caught up on his sleep after lying in the warm water!

(Wrapped up in his alligator towel after swimming)

Even though we’re balancing figuring out how he’s adjusting to his medication, there are pros, big pros. The “fog” that use to roll in during the middle of the day, when the spasms would just make him so tired and out of it, has lessened significantly. He can be tired and lethargic in general either from spasms or the meds, but it’s here and there and not all day long. That means our little boy’s attitude and personality is coming back more and more, and it’s been so amazing.

(Happy as a clam after swimming and long naps)

I’ve also been keeping a daily journal of how his days go and what/when/if he has any spasms. Giving his neuro office an update today, I realized in the last week of starting the double dosage, the spasms have diminished even more. He’s been having small twitches in his sleep, in his fingers, hands &/or feet, but that’s really hard to tell if he’s dreaming or if they’re actual spasms. Pretty much for the past week, roughly every other day has been just a few sleeping twitches (which may not be real spasms), and the other days he’s only had one episode, and for the most part a small one with just his arm or just his eyes; not some huge full body episode. And today….saw no sleeping, nor awake spasms! First day seeing nothing since before he started having them several weeks ago :-)

("Hurray! More time to play!")

Medicine, Tests...Happy Easter!

Riley has officially been on his medication, Sabril, along with two other supplements (vitamin B6 & amino acid, Taurine) since Thursday. I'm doing my best to keep a daily journal of how his days go, when he had his spasms, etc; that way after he has been on his meds for awhile we can look back and see how/if he's changed in any patterns. Unfortunately, there is no medicine that is guaranteed to cure his IS, but for him and his "not fully diagnosed" muscle problems, Sabril is his best option with the least amount of side affects that could be potentially really harmful for him. There is the chance that it may help decrease and stop them, then again there is a chance it may not have any affect. There will definitely be many check-ins with the neurologist and several more EEGs, to determine if his treatment is working.

After just a few days, the biggest change we can easily see is how tired he is. It's like the medicine has made him give in to how lethargic he's been, and he's been taking really long naps. Then again one of the smaller side affects of the meds are irritability (thankful nothing drastic seen there), and sleepiness! Guess we will take it, just hard not knowing how that little brain of his is doing in there. Spasms come and go just like they have been, mostly when he's tired. Sometimes they're a full body jerk, multiple little eye rolls, or a limb twitch. He had had small chunks of time during the day where he's super active kicking around, spinning on his back, swinging his arms, etc; it's those times where you really have to pay attention to see if he has any spasms within all that voluntary movement. But boy does all that movement bring smiles to our faces, not to mention some kind of relief that he's still capable of being active like that. Today he had two big naps, but some time in the afternoon with smiles and laughter, and a whole evening full of kicking & spinning, happy as a clam...

On Thursday we were back at Children's for more tests, thankfully just blood and urine tests; nothing invasive. As always everyone there was great with him and us while we waited on our dr's office to confirm a specific test they wanted. Of course as soon as it was relayed to our dr and that we were at the lab waiting, he called back immediately and Riley's name was called! He of course wasn't happy to be poked once again, and give two huge vials of blood. Whatever the many specific tests they're doing on all that, should hopefully help determine more specifically the problems in his brain and central nervous system that the EEG was trying to tell us (his IS being a symptom). Once again more waiting.

He was a happy and very sleepy boy for his first Easter with family down in Vancouver. Even though he slept through most of the visit, everyone, especially Great Grandma was thrilled to see and cuddle him.

The support through unknown

As I mother, accepting and talking about the real possibility that there is something amiss with your child is very hard to swallow and at this point still hard to talk about without choking back tears. Not that you want any of these tests to come back abnormal, but getting partial results and some sort of direction gives us more faith in our neurologist. But only having a partial answer may actually be harder than having no answer. We know there is something going on that is affecting both his muscles and his brain, and no specific course of treatment yet beyond what we’re already doing is very hard to bear. Not knowing the full answer and that there may (or may not be) something more we can do for him, makes me feel even more helpless than I already do.

With these spasms only have kicked up a notch (or many) since late last week, yesterday was the first time I was by myself with Riley all day while Chris was at work. Yesterday and today it’s been very hard to have my happy smiley boy one minute, and then have this fog roll in the next. It seems like he’s himself in the mornings, and then pretty lethargic in the afternoons when spasms seem to be most present. It also doesn’t help that it seems like the spasms are making him tired in general as well, and that’s when they happen. Until his medicine arrives tomorrow, all I’ve been able to do is cuddle him through it and rub his head. They are not harmful to him at this time, but you can tell that he doesn’t understand it sometimes, and sometimes he’s tired enough to sleep but they aren’t allowing him to do so, so he gets frustrated.

However, coming out and sharing with everyone our struggles and journey that we are on, and receiving the overwhelming love and support, brings me to tears. Happy tears. I admit I’m still not a fan of having everyone know, because it means that it has to be real; seeing how supportive everyone is means the world to me, to Chris and to Riley. He couldn’t have been born into a more warm and loving family and amazing friends. Thank you for being there for us and him as we continue to search for more answers and treatments.

From the beginning

For a few family members and friends, the topic of this blog will be of no surprise. For many others, this might be the first time hearing that we have already been on quite the journey with our little boy in the short time that he has been with us. This blog is intended to keep people in the loop with what is going on with Riley, without Krista and I having to specifically reach out to everyone with updates, as that can be quite time consuming and emotionally draining.

Around 4 months ago, we started to become concerned when Riley was not quite hitting milestones for head control, and would not do anything but cry during tummy time. Our pediatrician was not overly concerned, given his age, and told us that no two kids are the same, and milestones do not always happen on the timeline found in books. It wasn't until an appointment in November at around 5 months, that she became concerned. He still did not have great head control, still was not making gains during tummy time, and was no where near sitting on his own. Between his pediatrician and therapists, we decided to start physical therapy with him once a week to strengthen and teach his muscles in ways he wasn't learning to do on his own. Over the past few months he's slowly making progress on holding his head strong, rolling over, and starting to swing his arms out to reach for things.

In early December, we were referred to a Pediatric Neurologist, who immediately showed concern, and started testing for muscular disorders on day one. The first was a blood test, which we were told would be an indicator of potential muscular dystrophy if the results came back abnormal. That test came back normal, but we were then set up for an MRI to check for deformities in the brain.

Waiting for results was excruciating, but on on new years eve, we were told that the MRI came back normal, and we celebrated with friends that night. Next was a muscle biopsy. While having your 8 month old go through a surgical procedure is tough, knowing that results were not due back for two months is even harder.

Last week, we noticed that Riley was acting funny, and he started having minor twitches in his hands and feet. This progressed to spasms throughout his body, which we caught on video and showed his pediatrician. After an EEG and another trip to the Neurologist, we were told that Riley is having Infantile Spasms, which are a form of seizures.

On top of that, we also were informed that partial results were back on the muscle biopsy, and it showed abnormalities. We were told that he has Type 1 Muscle Fiber Disproportion. This is a deformity in the specific muscle fibers utilized for general strength and endurance. This begins to explain Riley's weakness, but unfortunately there is still more to figure out to try to find an underlying cause for both issues. The first priority, for now, is to start treatment for his spasms. Left untreated, infantile spasms can cause further development issues both physically and cognitively. Hopefully the medication will work, and we will start to see improvements soon, because Riley has been pretty out of it since this has started.

For now, we will continue to wait for more test results, and hopefully we will know soon exactly what is going on, so we can attack it head on. we will continue to use this blog to keep everyone updated on whats going on. We are extremely blessed to have an amazing support system, including all of our family and friends. We thank you all for your continued support as we continue our journey to figure out whats going on to our little boy.