|Santa Monica Blvd.|
This morning Sophie refused to put weight on her right foot again. She had not had a seizure, so I don't think it was neurological. We couldn't deliver her to school like that, so instead I called the osteopath and got an appointment for later in the afternoon. Sophie took a short nap and woke up, put her foot down like usual and walked. Honestly, reader, it's crazy.
Speaking of crazy, I'm both energized by the support and love sent my way regarding this whole measles thing and suffering from what I think might be PTSD-like symptoms. I'm always amazed by the arguments people make, by how they choose to state their opinions and with what sort of authority. When I'm not retching, I'm laughing at people's trust in "scientific studies," and it's not a jolly laugh. I like to point out that after getting a fever and screaming for three days straight a few days after her initial vaccinations, Sophie, at a little more than two months of age, started doing weird things when she woke up and I tried to nurse her. When I took her to the doctor, she referred me to a neurologist, just in case. That's what she said. The neurologist couldn't see her for THREE MONTHS. Yes, that's the way the healthcare system works. A friend of mine who happens to be a billionaire (I'm not kidding) arranged for me to see a neurologist immediately (a week or so after the pediatrician ordered it), and Sophie was diagnosed with infantile spasms a few hours later. Yes, that's the way the healthcare system works. Then began the odyssey of 22 drugs and non-stop seizures -- but WAIT! I forgot to tell you that Sophie was IMMUNIZED AGAIN, at four months, with all the necessary vaccinations except for the DPT (in those waning days of the last millenium, the Pertussis vaccine was live, and they had determined that it was too risky to give Sophie again. Now it's acellular and called the DTaP). Sophie was immunized despite the fact that she was being weaned from high-dose steroids that we ironically had to give her through twice-weekly intramuscular injections and on a powerful non-FDA approved anti-convulsant. I think even the vaccine fanatics would agree that this was not a good medical decision. Shortly afterward, her fontanel began to bulge, she was rushed to the hospital, given a spinal tap and then diagnosed with a strange and rare complication called pseudo-tumor cerebri. The treatment for that was four more spinal taps to relieve the pressure on her brain. She was five months old. I was 32.
Did I mention the 22 drugs over the next 19 years? Yes. How many of those drugs, taken in combination and given to an infant and then a toddler and then a young child were studied in such combinations and assessed rigorously over the long term? Guess.
ZERO, with an accent aigu and pronounced like the French do, quickly followed by what my Swiss German husband would say: Null, Null, Null (pronounced noool)
You know the rest of the histoire. Sophie will be 20 in March. I am 51.
Meanwhile, Sophie's seizures have dropped dramatically -- AGAIN! -- and while I'll knock wood three times to not jinx it, I think the Charlotte's Web higher ratio hemp oil is doing the trick. We've fiddled with the dosage and even weaned her a bit more from the benzo as well. Early reports (the much-maligned anecdotal ones) indicate that the children who do the best with cannabis are those on the least amount of drugs, particularly the benzos. Given that Sophie has been on Onfi for more than seven years and a pretty giant dose, we're weaning her very slowly. If all goes well, we'll start weaning her from Vimpat which she's also been on since it was approved for use in ADULTS in 2008. In 2008 Sophie was thirteen years old. It's unfortunate that the opportunity to try this medicine (which can be made from a plant by literally, anyone) is currently stymied by the unique collusion of politics/Big Pharma and physicians.
Listen to me. My faith in science is secure. My faith in the American medical system as it currently operates is ZERO, with an accent aigu.
Null, Null, Null