Tuesday, March 21, 2006

More information, less expectation

We're all enjoying having G and E home for spring break--we'll miss them during the days when they're back in school.

I've done some reading online about infantile spasms, also apparently called West's syndrome. Last evening I had Q in for a reaction to amoxicillin. The pediatrician noted that he suspects the diagnosis of infantile spasms to be correct, based on Q's repetitive stiffening, relaxing, stiffening, relaxing, etc. as well as certain other involuntary repetitive motions. The doctor also said that it's pretty unusual for a kid to have IS if they aren't born with a host of other congenital malformations. Q has a tiny head, proportionally speaking, but is functioning like a baby about three months of age or older: rolling over, sitting up unaided the other night (though those could be part of the hypertonic features of what's up and that's not so good), tracking, smiling and cooing responsively, soothing to familiar songs and voices, bringing his hands together. He even rubbed his eyes yesterday morning.

It turns out that the pediatrician we saw last evening has close friends whose daughter, now four, had the same diagnosis when she was a few months old. She presented with the same symptoms as Q, except that her head measured normally. They did ACTH (adrenocorticotrophic hormone) treatments and then lots of neuro-developmental therapy (which Q could begin as early as next week). The treatment is hideous, but it greatly reduces ongoing damage as kids grow out of IS through their toddler years and may drop the rate of seizure disorders they suffer later. More than 50% of kids with IS go on to develop seizure disorders in later childhood. Prognosis is dependent on the underlying cause of the spasms. Usually, the spasms are preceded by neurological damage.

So. I'm still breathing. Feeling a little less shocky. Hoping that the news of the next couple of days is not the kind that makes me look for a receptacle for the contents of my reeling stomach. Before this previous year, I had no idea just how physically affected one could feel when presented with horrible news. Under the developments of last summer, I spent months feeling like I'd just spontaneously cease to exist because really, no one could survive such a horrible thing. I still feel that on occasion. This is worse.


I took the kids for pictures earlier in the evening. I've never had such a rough time getting everyone to sit, smile, be happy already, dadgummit!! I think they were picking up on my turmoil. About halfway through it hit me--what I wanted was a perfect session with my perfect babies, so I could have concrete affirmation that in fact, they are all okay, they will all be okay. I wanted a snapshot of "perfection" before I have to stare down the barrel of corticosteroids and all their nasty side effects. It occurs to me that my expectations were a bit, ahem, unreasonable. They are beautiful, lovely children. We had a heck of a day--counseling for each of the older four, lunch out, shopping, haircut, bank, more shopping--and everyone was still in good spirits by the end of it. We were exhausted, but still friends and all being very sweet to each other. It was silly of me to expect more of any of us. And the truth is, even if they aren't precisely what I set out for, the pictures are very cute. They are of my beautiful, lovely children. The same ones who all sang "Hush Little Baby" to Q so he'd settle down for the camera.

Wish me luck, send Q (and his mama) prayers. I'll be back after the hospital stay with an update.

Peace to you and yours.


texasgal said...

I know exactly how you feel. My daughter just turned a year old. She was diagnosed with IF at six months. It is like someone jerking the world out from underneath you. We did the ACTH injections for three months and weened her on/then off predinose for a month. Her neurologist thinks her spasms were the idiopathic sort which we are so grateful for. She is seizure free but has some developmental delay in her large motor skills. She seems to be on track cognitively. But man oh man, I think I have aged ten years in the last six months.

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