Tuesday, February 19, 2013

Meditations on medicos and medicines

C takes her meds

Last week we had a doctor binge.

First, at our lawyers' behest, we drove with C. for three hours to an infectious diseases specialist, a potential expert witness in our lawsuit.

A brief digression: 
We are still hoping - after some twelve years - to bring a malpractice claim, probably against the Ministry of Health, for administering the MMR vaccine to C. without warning us of the risks involved. One day before the vaccination, I consulted with the two doctors who were treating C. at the time. They both assured me that the risk was no greater to her than to the general population and that I would be endangering her more by not vaccinating. We now know that according to some experts the possibility of serious side effects is higher for neurologically impaired babies. C. was more likely to suffer injury than a normal baby. In fact, she began seizing about ten days after the vaccination.
Unfortunately, the doctor we trekked to last week didn't check C. at all and spent less than ten minutes listening to us. It seemed like a colossal waste of time. The lawyers haven't even answered the email we wrote after the visit. I know this case is a long shot but, hey, how about a bit of common courtesy.

The second visit last week was to the neurologist in whose care C. has been for several years. This visit was far more uplifting than the one to the infectious diseases guy. We left with plenty of goodies in our hands:
  1. A referral to a genetic test that we haven't yet done because it was expensive.
  2. The decision to remove one of C.'s three medications along with instructions on how to proceed with that. The drug in question is Neurontin (a.k.a. Gabapentin) and it will take three months. Then we replace it with Valproic Acid which is apparently a terrific drug. 
We did try that briefly many years ago but the thinking now is that (a) a body's chemistry changes over time so C.'s reaction could be entirely different; and (b) the brief trial may not have been enough.  
Afterward we will probably also stop the Inovelon (Rufinamide). Neither Neurontin nor Inovelon were really helping. We had left her on them simply because the conventional wisdom used to be that removing drugs - even those that are ineffective - is liable to trigger seizures. Doctors preferred to just add new ones.  

Current thinking - I first learned this from my daughter-in-law the pharmacist - is to keep the maximum number of meds at two. Our neurologist agreed that's the optimal number.

So, for better or worse, hope is once again rearing its head. With fewer seizures and fewer drugs, perhaps C. will have a clearer head and make some progress.

P.S. In addition to C.’s drugs, we are sticking with the Modified Atkins Diet. For those whose children have epilepsy, have never tried the diet and are considering it, here [link] is the place to go.

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