http://www.infantilespasmsinfo.org/Infantile-Spasm-Awareness-Week.php
Otis is on his 13th day of his new medication, Vigabatrin (or Sabril), and has 5 more injections to go before he is completely tapered off of the ACTH. So far, we have noticed a definite change in the patterns of his spasms. Before receiving any treatment, Otis was having clusters of anywhere from 3 to about 20 very strong spasms. He would experience a cluster, which we referred to as "episodes", about every 2-3 hours around the clock, usually while he was just drifting off to sleep or just waking up. He would become very upset between each spasm, we think because they were just so scary for him.
On the Clonazepam and B6, which he was on initially and for a very short time, there was really no change in his spasm activity at all. On the ACTH, his spasms became much much weaker. He stopped having clusters of spasms, and instead had 1 or two at a time scattered throughout the day. The spasms were so weak that they didn't seem to bother him at all. Sometimes he would even smile between spasms.
On the Vigabatrin (and as he tapers off of the ACTH) the clusters have returned, but the spasms remain very very weak and instead of occurring over a period of a minute or two, they occur over a period of about 10 minutes. These days, a spasm pretty much consists of a very slight forward head bob and an eye roll, or sometimes just an eye roll. Unfortunately, the clusters are much larger than they have ever been. Over the past few days we have been counting clusters of about 40 or 50 all the way up to 115 spasms over a period of about 10-15 minutes. This has been really discouraging, especially since we had put so much hope in the ACTH working for him, and then more hope that the Vigabatrin would finally be the right treatment for him. We are just praying so hard that the Vigabatrin will do the trick, and for the patience to let it do its job and heal Otis. We continue to call the neurologist once a week with progress reports and to discuss any necessary dosage changes, and will see him again on December 12. So far, no additional EEG's have been ordered.
We are really enjoying working with our Tiny-K coach, who continues to come to our house once a week to check on Otis's progress and to teach us how to be more proactive in helping him pick back up on his motor development. She has given us so many wonderful ideas and suggestions for working with Otis on lifting his head forward and tucking his chin (this is a big one, since he really doesn't have much head control at all, and likes to just throw his head waaaay back), rolling from side to side and onto his tummy, batting around toys that make sounds to teach him cause and effect, and of course, TUMMY TIME!
Otis is working so hard at getting better and stronger. We are super proud of him, and feel so blessed that we get to be his parents. We never knew it was possible to love someone as much as we love our amazing little Otis.
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