Neurology and GI updates

Gastroenterology: As an 18 month old, Andrew is about 28 inches long and 18.5 pounds. He’s an itty bitty guy and is far, far behind in the growth charts, although he is still proportional. In the past six months of visits with his GI doctor, we’ve attributed his lack of weight gain to a number of factors: reflux (now mostly controlled), constipation (mostly controlled), delayed gastric emptying (not much we can do), and–at this point, most significant–his lack of coordination when it comes to the anticipation, chewing, and swallowing of food. We’ve been working very hard with a feeding therapist on the last part.  Having a feeding tube (mic-key) placed is always in question with Andrew’s doctors. It would certainly be the easier way to go, as feeding Andrew is not only extremely time consuming but can be an emotionally draining one as well.  For now, yes, Andrew is underweight. But he is proportional for his size, certainly not malnourished, blood tests are all normal, and aside from his clear neurological issues, is a healthy boy. From six months ago, Andrew has made significant strides in feeding therapy and we’re going to fight the tube as much as possible.

Neurology: After a diagnosis of infantile spasms back in December of 2010, Andrew’s hypsarrythmia went away after a two-week course of ACTH. And then he went on a prednisolone taper and it came back shortly after. Since then, he’s also tried Vigabitrin (didn’t work), Depakote (didn’t work), and is now on Zonegran (we’ll find out soon whether it’s working or not.)  While Andrew still has hyps, his EEG has also started to slowly change to a slow, spike-wave pattern most commonly seen in a childhood epileptic syndrome called Lennox-Gastaut (LGS.)  It is not uncommon for children with infantile spasms to be later diagnosed with LGS. As Andrew has never had clear clinical seizures (seizures we can see happening) despite having devastating EEG patterns, his case is highly unusual. What has this meant for Andrew on a day-to-day level? Well, Andrew’s physical development has stalled at the newborn stage but it’s hard to say whether it’s the cerebral palsy or the epilepsy, although we suspect mostly the latter. Andrew’s vision has not returned at all either–a consequence of the hypsarrythmia. It sounds all bad and terrible but it could always be worse. We pray he never develops clinical seizures because of IS or LGS, although the odds are probably very much against us. At this point in our journey with Andrew, all we want for him is happiness, physical comfort, and a love of life. Anything beyond that is considered a bonus. And despite the painful and challenging journey he has been on, this is exactly where he is right now; a place we could not have imagined in our wildest dreams during Andrew’s first entire year of life. We do not take this for granted, ever. May the LGS seizure monster never take Andrew’s newfound zeal for life.

After kissing and cuddling, swimming in his waterwaybabies therapy pool is Andrew's favorite activity ever. Water allows him to move and groove in a way he is unable to on his own.