Needles in a haystack

June 30, 2008 at 5:35 am Leave a comment

     The first winter of C’s life, his pediatrician recommended a vaccine for the RSV virus. RSV is a common cold virus that can be dangerous for preemies because their lungs are often compromised. In order to receive the vaccine, a baby has to qualify based on how many days they were on a ventilator, how early they were, how sick they were, etc. There is only one company that makes the vaccine, and there is a very limited amount produced. Every year, each doctor has to cull their patient lists and decide who gets the vaccine.

     The summer he was just over one, C contracted an RSV-like virus, and nearly had to go back on a ventilator because he was so ill. We were on the phone with the doctor’s office, at times hourly, monitoring how he was doing. We were in the doctor’s office several times a day checking blood oxygen levels to make sure C was breathing well on his own. Because he was so ill that summer, he was on the list to receive the vaccines during his second winter as well, which is fairly unusual.

     The synagis vaccine is given monthly during the winter months; where we lived, the winters are extraordinarily long, and the shots are given from early October until late May. They split the doses and the amount increases by weight, and by the time C was starting his second year of the shots, he was getting 4 shots each time we went to the doctor’s office.

     Additionally, the vaccine costs an enormous amount of money. They do, however, top out an an upper amount. We topped out near the end of the first year and for all of the second year at that upper amount, which was $3,750 per month. Per month. Thankfully, insurance covered all of that amount, but I wondered endlessly about children whose families could not afford them, whose lives, like C’s, perhaps depended on those shots.

     It’s no wonder that for a good 18 months after stopping the shots, he would scream every time we entered the doctor’s office. It’s taken years to get to the point where he would allow even the most cursory of exams by a doctor. Several times, when getting bloodwork done, it took 6 techs to make it happen. They rarely believed me when we came in; C is small and he appears mild-mannered. But they learned the hard way.

     Now bloodwork is eased by a numbing creme I put on his arm an hour before we go. In the back of my mind I wonder if this is smart; shouldn’t kids learn that sometimes there’s pain in life? Yet I figure this child has had more testing, tubes, pokes and prods in his short little life than Husband and I have in our entire lives combined, so I let it go. Like so many things with C, while we recognize the potential future impact of our actions, sometimes we have to make the choice to help him now and worry about the future later.

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Entry filed under: autism. Tags: , , , , , , , , .

There is no off switch Engaging the Senses

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