Ellie is now 3 years old, and has come so far in the past year. She's learned to walk without her walker or gait trainer.
She's learning to talk now, and cognitively has just come so far. She can touch objects of a specific color sometimes when
you ask, and seems to know what a square and triangle are. She really WATCHES TV now, and looks forward to The Wiggles, The
Doodlebops and Stanley. She'll bring me the remote control, or even try to change the channel herself!
She's starting to feed herself, finally. She can use a spoon after I load it up with food, but still can't finger feed.
But she tries very, very hard!
Her main issue is still hypotonia. Hypotonia is a physical symptom of many different medical disorders, including cerebal
palsy, Down's syndrome, and many different neurological disorders. It is characterized by loose limbs, soft muscles
and an inability for a baby to control her head.
Ellie is currently diagnosed with "Post Infantile Spasms Syndrome" As a result of the seizures, she has "Benign Central
Hypotonia" . What this means is that all of her muscles (centralized) have low tone (hypotonia) and do not respond
well to stimuli and that it is probably not "harmful" (benign). I'm not going to post any links about Infantile Spasms
here, as most info on the Web is rather outdated, and just too scary, to be honest. Suffice it to say, it used to have
a very bleak prognosis, and now (if caught in time) has a much better prognosis. Ellie probably had it because
her EEG never showed the classic "hypsarythmia", or abnormal brain wave pattern, that is considered a diagnostic signal for
IS. However, her seizures and the results of those seizures DID fit the pattern. She has also responded only to
Topamax, which is a treatment for IS.
Her progress, on the other hand, seems remarkable for a child with IS. It is entirely possible that we just caught
the IS remarkably early, and that accounts for her wonderful progress. Most children with IS don't get diagnosed until
they've missed several milestones and their seizures get very bad. Ellie's seizures got very bad, very quickly.
It was awful at the time, but lucky in the end.
Her hypotonia could be a result of IS, or be completely separate from her seizure disorder or genetic, as both my brother
and I are waaaay too flexible. I think all of her issues combined come from a result of the IS and a familial collagen disorder,
but that's just my speculation!
The important thing to remember about hypotonia is that no matter the cause the best treatment is always physical therapy,
occupational therapy and play!