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| Santa Monica Blvd. February 2015 |
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
Amen sister.
ReplyDeleteYou have to do what's right for you and your family. My son had a bad reaction to the pertussis and is not immunized against that.
ReplyDeleteTell the haters they can kiss your ass:)
Sending hugs.
I am staying out of this debate because I DON'T KNOW. And the studies say one thing and yet...I know you. And Sophie.
ReplyDeleteAnd what is disturbing me so much is the virulence everyone is bringing to this issue. Which seems to be the way things are these days. We can't just agree to disagree. We have to prove that we are right when actually, there may BE no right side. There are only informed choices and luck and blessings and curses.
But one thing I am sure of is that cannabis is helping your girl and for that, I am grateful.
And I am also sure that in such situations as the measles debate, we need to learn to respect choices if they are made carefully and with thought. This is they way things should be.
Glad to hear of the improvements for Sophie and being able to wean her a bit more. As far as the vax debate a flippant thought I had as I read this was that at least Sophie won't get measles. And I hope that doesn't offend you and you understand what I mean.
ReplyDeleteI didn't realise the seizures started after vaccines. I guess most people this happens to are assured it's a coincidence. A lot of people see very happy to accept that and move on.
ReplyDeleteIt doesn't sit well with me either. People don't seem to have the emotional reaction to these stories of post vaccine damage or death that they do to stories of children who suffered damage or death post measles. I don't quite understand why unvaccinated children are of less importance to the world.
The National Vaccination Injury Compensation Fund is nearing 3 billion paid out now - a lot of people are turned away, though. Did you ever submit your case? You're paying for this fund in the taxes you pay on the vaccines... the pharmaceutical companies were made exempt from financial liability.
I'm so sorry, though. I am terrified of this. It's hard for me to balance a story like this against my own experience of having mumps and measles in the 70s. They were simple, childhood diseases, and I was a breastfed, well fed kid. They came and went without incident :(
Jill, I'll forgive your flippancy, but Sophie has not been immunized against measles. The MMR is given at 12 months. She was no longer getting vaccinations by then.
ReplyDeleteI was knocking on wood the whole time I was reading your paragraph about Charlotte's Web for you, and I'll keep knocking, hope it keeps going well.
ReplyDelete*knock knock*
What I don't understand, though, is why anyone is giving you crap over not vaccinating. You're in the 5% who they expect won't use vaccines. Its built into the system. It doesn't affect herd immunity. Why in the hell does it matter so much to some people? I'm all for vaccination, but not for sweeping generalizations. People are weird on the Internet.
I'm with Ms. Moon. And I'm married to a pediatric infectious disease doc. When I vaccinated my infant daughter, I was wary because I knew there were risks, albeit low. But if it happens to your child.....she did develop high fevers after shots, and that caused concern, but I kept up with the schedule and - luckily - the fevers abated and all was well. It could have gone the other way, I am well aware.
ReplyDeleteAre you having to take any precautions with the measles outbreak? To me, Sophie is the reason that herd immunity is so important. She can't be vaccinated, protected. But then, vaccines caused this situation for her and your family in the first place. I'm curious - did you vaccinate your boys?
I am both weary and oddly (angrily, defiantly) energized by the ongoing debate. I am finding vaccination fights in the strangest corners of my social media life and several times a day toy with walking away from Facebook and Twitter and the like. But then I find myself walking the dog and having imaginary conversations (calm, rational conversations where my opponent is struck dumb by my rational, compassionate arguments) that border on obsession.
ReplyDeleteI wish you much luck in the ongoing wean and I hope that the CBD oil continues to work. May you find pockets of joy in today.
Tara Crowley -- Thank you for your comment. You probably haven't read that I am vaccinating my boys on a different schedule. Henry recently got the MMR vaccine and had a mild reaction of a constant headache for four days.
ReplyDeleteApparently as a child..something strange happened to me after getting a shot. I was a silent protesting child I made no sound but kicked and thrashed and it took 3 nurses to hold me down. After that my protest was taken seriously and I was no longer given shots.
ReplyDeleteI don't know exactly what happened.. my parents just tell me it changed me.
I personally think some shots are crap anyway...I actually caught one of the things I was supposed to be vaccinated against.
Now that I am older there is a really big push for HPV vaccine...the endocrinologist said never give that to her Ever! The other doctor that was trying to get puberty going said I was not doing my duty as an American Citizen! Well Poo Poo to her .
I is my right to REFUSE shots ...thank you United States of America!
From Helmet Girl...having trouble logging in on this computer.
So glad to hear of Sophie's continued improvement. I am knocking on wood with you--and feeling your PTSD. Sending love and courage.
ReplyDeleteI'm with Ms. Moon, respect is necessary and it is the way it should be but it's not and it won't be, except by those of us who get it and I think the numbers are increasing.
ReplyDeleteYou are a tiger woman, Elizabeth, albeit with soft paws ... and sometimes not so soft, but only when the situation demands it.
My philosophy is try to keep your eyes on your own page and do what you can to inform others when you think it is right for you.
So glad to hear of a calm period for Sophie, my heart adds a beat when something is working for her.
Sending love and hoping there's time for a nap and a book soon.
Elizabeth - I was totally clueless! In which case my flippant comment was rude. But I didn't mean to be.
ReplyDeleteSo since I've been educated by you and done a lot more research on my own, I've entered into some social media "conversations." Telling your story and trying to turn the tables on the vehement people asking them, "what would you do if this was your story?" It is amazing how they so easily can ignore the lesser percentages for the "greater good." They say they are empathetic but it's as if they are talking about statistics for a marketing campaign instead of real people. I usually stay out of such heated discussions and friends are getting angry at me and when I don't back down they insist that it is ME who doesn't understand. So I send them to the CDC website to show that I am using Sophie as an example of one in a million and that infantile spasms is a proven side effect of the MMR vax. And then I think how appalling it is that people have the audacity to NOT understand that there are exceptions here that make this issue less black and white then it would seem and say this to YOUR face. But I don't believe in things like war, etc and have been called ignorant so in other ways this doesn't surprise me. I am just so sorry this war is so personal. Sweet Jo
ReplyDeleteSweet Jo -- thank you for your impassioned response. I just want to clarify with you, though, that Sophie never received the MMR vaccine. She was vaccinated with the old DPT shot, and we believe the whole-cell Pertussis was what she reacted to.
ReplyDelete