We had our neurology appointment this afternoon and it turned into our usual 2-hour marathon of what has been happening with Mira and trying to determine where to go next. Neurology at Children's Mercy is going through some staff transition over the past few months but fortunately, our neuro is still there.
First, Mira's Biotinidase Deficiency labs, drawn from July 2006 (I can't seem to get my dates right - thinking it was May 2006) were normal. I really just wanted to make absolutely positive that we had not overlooked something so easily treatable.
Second, our neuro gave me a briefing on MTHFR and basically said that based on her labs, the likelihood of her having some sort of connection to such a genetic issue would be slim and none. I ask dumb questions because I am not a neurologist; nonetheless, it doesn't hurt to ask.
Basically, we are going to do some minor tweaking with the diet and continue with it. We are also going to start weaning her off of Lamictal. Our neuro said there is no reason to continue ineffective medications, so the less the better. We will wean her off of that first, then look at weaning Zonegran. Perhaps once she is off those medications, we will see how effective the diet is and just take it day by day. We area also considering Vigabatrin again, but we will cross that bridge when we get to it.
After an exhausting day, we met up with friends at Avelluto's for a carb-fest-romper-room dinner. Seven kids, seven adults and none of the mess to clean up. Thanks Avelluto's!
On a side note, Questcor Pharmaceuticals, the manufacturer of ACTH (which is the first line of defense against IS and used for MS as well) announced this week that they have decided to raise the price of a vial of ACTH from $1,000 to over $23,000 in an effort to stay 'profitable'. This absolutely makes my stomach turn. For so many children and families, ACTH is the first line of defense and often the only medication that helps combat Infantile Spasms. It now has been put completely out of reach for most families without insurance. Mira did ACTH and had we not had insurance, her 4 week trial would have cost us around $5,000 for the medication alone. It will now cost over $100,000 for a child to go through a typical round of ACTH.
I will end my soapbox on this: something has run completely out of control in our health care system so much so that it is just surreal to me. The cost of medications, therapies, testing, and hospital visits for Mira would have bankrupted us in about 15 minutes. Praise to God we have good insurance. We now worry only about lifetime caps. It saddens me to hear so many families on the I.S. message boards wondering if they can afford to treat their child or what alternative(s) they might have to pursue to get help, both medical and financial. It seems the new corporate pharmaceutical motto is: 'how much are you willing to pay for something that might save your life - in other words, how much is your life worth to us?' It truly sickens me how bad it has become.