Thursday, June 5, 2008
Infantile spasms is an especially insidious form of epilepsy in that not only are the children plagued with seizures, but the irregular activity it causes in the brain inhibits and often causes regression of the child's development. Reagan's development has basically been at a complete standstill since her diagnosis; she's made "progress" in some areas but hasn't reached an actual milestone since the seizures began. Which means that Reagan doesn't sit up alone, she doesn't roll, doesn't crawl, and of course doesn't walk. This makes daily life for us very difficult because we basically have to carry her around with us 24/7...and now that she's 20+lbs that's not a very easy task. She's also so fussy that getting any free time by putting her in her jumperoo, swing, or on her back/tummy on the floor is nearly impossible. If she happens to tolerate any of those things for any length of time it is generally only with our constant involvement and encouragement. I can imagine how wonderful it would be to be able to sit her down on the floor and let her "play". Or to put her down on the floor to crawl around or walk after me...things that most parents take for granted. And I pray that someday we'll be able to do just that. Many kids with infantile spasms eventually reach these milestones...it just takes a lot longer and it usually doesn't happen until they achieve some sense of seizure control or freedom. Yet another reason why we want so badly to get a handle on these seizures Reagan is having, they are literally affecting every aspect of her life (and our lives). If Reagan has less seizures...we have a good day. If she has more seizures...we have a bad day. Today was a bad day. It started out well, with her having less seizures last night and early this morning, but took a turn for the worse when she had a scary tonic seizure (the first since starting the diet and only the 4th one ever) at 10am. Afterwards she had lots of smaller seizures (one after another), cried for about 30min, and then slept like a rock for 3+ hrs. Poor girl. She slept through half of her PT session and her entire session of vision therapy. It's been a rough day for her. We're counting the days/hours until they adjust the diet and praying that it will give her some relief from these seizures. Please keep her in your prayers!