Respen-A Or Not Respen-A?
by Steve West on April 19, 2010

We got a prescription for the aforementioned drug and have been administering it to Olivia for one month now. The results are pretty mixed. There have been no side effects apart from some minor appetite issues but also not a whole lot of observable benefits. Not a lot but a significant few. Olivia seems to be slightly more aware of her world than before. She is somewhat more focused when performing tasks and turns her head to identify noises as opposed to ignoring them as in the past. Her world is now more than just a three foot sphere of influence. We got an additional two month supply as it was recommended that a trial last for a minimum of two months.
Her vocabulary has expanded by a few more words and she apparently has mastered a few school tasks by rote memory. She memorizes a lot of things that I previously would not have expected and has learned a few more tasks previously unachieved. She types using a standard keyboard but only to copy text not generating original thoughts.
But, and this is the rub, how much of this is attributable to the medication and how much is just the natural maturation process? The progress is enough to continue the experiment. At least for another few months.
The cost is manageable, although the hundreds we have paid are yet to be reimbursed by our insurance and the supplements she has to have are cumbersome to an already finicky eater. But she physically appears to have nothing adverse happening. Brenda and I are maintaining enough enthusiasm to continue the efforts required. We'll continue to observe and do our best to make unemotional judgements.
Three Replies to Respen-A Or Not Respen-A?
Scott Hardie | April 20, 2010
Agreed. This is good news! If the drug did help, could Olivia lose some of the gains that she made if she went off of it, or are the improvements permanent? Every patient is different and this drug is brand new, so who knows. I think Amy has the right attitude; progress is progress. :-)
Jackie Mason | April 23, 2010
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Amy Austin | April 19, 2010
Sounds pretty good, if not promising. And hey... whatever the cause, progress is being made, right? And without any apparent side effect, too. This is good.