The Ellster

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New Post in the "Achievements" section!

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Welcome to Ellie's Journal!

Welcome to Ellie's new website.  As her mom, I will be posting all about her progress, past and present.  There will be lots of pictures, of course!  I will endeavour to keep this site updated frequently.  Have fun visiting us and don't forget to sign our guestbook!

I will try to post at least one new picture of Ellie every week, so be sure to check here often!

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Ellie and Mommy at the Park - March 2005

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Click here for my Photo Album

A little about Ellie...
 
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  I'm not going to post any links about Infantile Spasms here, as most info on the Web is rather outdated, and just too scary, to be honest.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!

 
 
 

All Ellie, all the time!
The Ellster...making the world a better place, one sloppy kiss at a time!
Elizabeth Grace, spectacular kid.

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