Saturday, December 9, 2006

The downside to blogging

When I decided I would do this, one of my concerns was that certain people would leave comments like this:

Non crazy Mother has left a new comment on your post "What happened to My Marissa":

You are very misguided. I think you are abusing your children by not taking care of them. And if you think that vaccines made your daughter sick then you must be very sick yourself. It sounds like she had a brain tumor and you were too stupid to go to the doctor and see if you could help her. Shame on you for hurting your child. You are to blame. Shame, shame, shame. I suppose you breastfed all your kids until they were 5 years old. Freak! >>

Fortunately, it's the only one I've gotten so far. I chose not to publish it in comments since it's not really a "comment" persey, it's really just a very very sad person. Or maybe it's a 13 year old with nothing to do. That's what happens on the internet. It's like writing a book. Except when you write a book people take it into their homes and they talk about it and maybe discuss it with their friends. Here, we get to read the reviews instantly, and people can say whatever they want because we will never know for certain who they are.

Another hazard would be someone getting a hold of your blog and holding it up for ridicule and misrepresentation. That happened to me yesterday.
(my mac doesn't seem to respond to the ctl cues given by blogger, if anyone knows how to make those work, please let me know!)

On the upside, I am reminded of why I avoid doctors once again. If you will notice, he did not even read Marissa's story correctly. He had a preconceived idea of what happened and then just skimmed the story. He claims that Marissa had febrile seizures and that is why her initial postical phase was so mild. Marissa never had febrile seizures, and no where in her story does it say that. He also claims she died during status epilepticus. Although she suffered through that time and again throughout her life, she in fact was not seizing when she died. So I am reminded that when I am speaking to a doctor, in most every case, THEY DO NOT EVEN HEAR ME. Even when I corrected the information in his comments, he ignored me. This is all aside from the fact that he put a bottle of some sort of cleaner at the top to represent the name of my blog~ Lavender Essence, which was chosen because when Marissa died, her dress was lavender, as was the beautiful sunset.

Good doctors are few and far between. I know a few myself, but we had to search long and hard to find them. My sister is one. Marissa's neurologist is another.

Would you want this guy to care for your children? I would have to wonder if my child was getting the appropriate treatment based on the fact that he could not even correctly read my blog. Maybe he's just trying to get me to shut up? Who knows.

Oh, and "non crazy mother", please refer back to my post in order to see the involvement of the medical profession. Also, no, I do not nurse my children until they are 5, only until they are 3 or 4;o)


OHN said...

I got your link from Flea (i am oddly drawn to his blog for some strange reason). I read your story about Marissa. There is nothing in the world that equals the loss of a child. I honestly don't know if the immunizations were to blame but I certainly would not doubt that it may have contributed. Our neighbors have almost an identical story to yours. Their son is in his 20's now but is in a vegatative state. I always worried when it was time for my kids shots-I worked many years as an EEG tech and saw many children come in with sudden onset seizures-several seemed to correspond to immunizations.I think the fact that you are creating awareness is very important for people to make informed decisions. I am now in daily contact with many physicians and it never ceases to amaze me the difference in the way they treat their patients. Take 10 docs and you will get 10 different treatment courses. I am so sorry you lost your daughter. I hope you have some comfort in knowing you will be opening the eyes of many people that it is ok to have a dialog with their docs...if your doc doesn't give you the time to ask, change doctors.

Non Crazy Mommy said...

Ok so I know it wasnt fair of me to say some of those things. In fact last night while I was washing bottles I really thought about it. So I was a little unfair. I still think that you are grasping at straws regarding vaccines. If they were that bad then you perhaps would have the same problems? I think your daughter was born with problems and there was nothing anyone could do to stop them. Which is very sad. I work in a childrens oncology clinic and I see the worst of the worst. Many people want to blame something that has nothing to do with the fact that their child has cancer. So I feel sad for you that you have to blame something you dont fully understand on your daughters death.
How do you know that she wouldnt have had the same problems without the vaccinations? You dont and never will. Rather than blame mainstream society for your pain why dont you just wallow in your grief and get on with your life? I am not saying that to be mean just accept the fact that there was nothing you could do to stop the seizures and its not your fault. Which is I how I think you really feel. You feel like you could have prevented this. There is no way you could have prevented this. No one could.
I have concluded that the reason why you dont send your kids to school is because of the vaccinations. Which is unfortunate. Your kids are missing out on becoming independent from you and your husband and are being deprived from differing viewpoints. That, my crazy Mommy, is something that is going to come back and bite you in the ass later on in life when your kids get older. "mommy why dont I have any friends?" You can only protect them for so long.
So I am flattered that you put my comments on your blog. And yes I do still think its very weird to breastfeed until your child his 4. See I was only off my one year.
As for Flea, he is doing what all doctors do and protect his patients the way he was taught. You do what you want so can he.

Clark Bartram said...

It's actually pretty easy in most states to get out of the compulsory vaccinations and still attend school. Some states require more paperwork or a signature from a doctor and some require nothing. I doubt that many parents home school to avoid immunizing their children. But many parents to avoid immunizing their children probably home school. The two are correlated but there is not a causal relationship.

NotMySecondOpinion said...

Barefoot mama,
I too found your link through Flea's blog. I am a first year medical student and I wanted to thank you for sharing your experiences with the world. It is a brave thing to do and it sounds like you don't deserve the criticism and mockery you're receiving from so-called "rational people." It doesn't lessen your pain to have your views ridiculed and I am sorry that you have suffered even more in the sharing of your story.

You've lost a love of your life after so many months of hardship and suffering. Your daughter died from something that the medical profession struggled to understand, but failed. To make matters worse, many of them were dismissive and unsympathetic to your concerns. That is regrettable and I will strive to use this as a reminder to myself to be different when I have patients and need patience. :)

Believe it or not, but the majority of a good diagnosis comes straight from patient history, not the blood sticks, labs and scans that are done at fancy hospitals. A good diagnostician recognizes the trends and notes when something is up. It sounds to me like you were in the position to recognize a suspicious trend in Marissa, linking vaccines with the crippling seizures that she experienced. Your doctors were dismissive of them at first, because it is a rare occurrence to get such a violent reaction.

I typed in "vaccine side effect seizure" into PubMed just now, the repository of scientific journals, and I came up with one link on "immunization with DPT vaccine activated thiosemicarbazide-induced convulsive syndrome in mice." This shows a causal link in mice between DPT and seizures... which I found curious, even through my puzzlement of the Russian to English translated article.
(Kovals'kaia, 1980.)

I do not post this to provide you with more evidence that your daughter suffered as a result of shots. I do this to let you know that I take your views seriously.

When I type in "vaccine seizure" into PubMed, the first link that comes up is this: [edited for length and grammar] "The boy started having attacks and jerks after the first injection of DTP. The EEG confirmed the typical features of hypsarrhythmia. Intramuscular ACTH was commenced for 2 weeks. No problem was reported until the age of 9 years when he started having attacks of jerking. He was treated with sodium valproate. Another 11 year old boy, his second cousin, had momentary black outs. The EEG showed findings of idiopathic epilepsy. Treatment with sodium valproate was commenced. The children of both cases belong to a family in which there is a tendency to seizures. It seems unlikely the triple vaccine produced the infantile spasms in case 1." (emphasis mine)
(Lapatsanis, 2006.)

It is a dangerous thing to be misled by false information, be it "vaccinations can cause serious seizure disorders that would otherwise be preventable" or "vaccinations are dangerous to your health." Understand that Flea speaks bluntly not out of disrespect to you and your beliefs, but in the full understanding of the SEVERE consequences that would take place otherwise. He knows what diphtheria, tetanus and pertussis could do to a child. If you did not vaccinate and Marissa contracted one of these diseases, she would have suffered. Less than a handful of people contract tetanus each year, not because of any decrease in the prevalence of Clostridium tetani bacteria in rusty nails and dirt. Tetanus is not seen in hospitals precisely because of the aggressive public measures that have been going on in the past 100 years. Many doctors nowadays would consider themselves "lucky" (in purely academic sense) if they get to see a case of tetanus in their lifetime. Still they, know that a patient starts having a difficult time speaking (aka lockjaw) which progresses into muscle spasms that cause the entire body to arch back painfully, lifting the patient off the bed. When their diaphragm is involved, breathing is impaired and the only thing you can do at that point is put them on a respirator, pump them with meds and pray.

Imagine if instead of seizures, Marissa had tetanus and you had to live with the regret of knowing that you could have saved her life with a simple vaccine. This is basis for the “righteous fury” borne of medical professionals who see something they could prevent with simple public health measures, but parents refuse treatment. Flea is scared that you’re spreading false information and scaring people into refusing a vaccine. In fact, you might be spreading true information and there is something that doctors CAN do to intervene if a reaction to DTP is noted earlier. You might be speaking in the full understanding of the SEVERE side effects of a vaccine. Wikipedia suggests that you’re not alone. The thing is, this is not backed up by current literature and Flea’s position is. Additionally, the newer DTaP vaccine has a significantly reduced number of side effects. Why is DTP still used? A non-profit org called the "National Vaccine Information Center" claims that the profit margins for pharm companies are cushier with the more dangerous vaccine. *tilts head* That’s certainly something to get angry about, IMO.

Understand that everyone had their own experiences and emotions to color their comments. Flea’s are colored with his interactions with wary and resistant parents. Yours are colored with negative experiences with doctors. There are all sorts of parents and all sorts of doctors and it is unfair to stereotype either category as ignorant, stubborn and deaf to everything that does not fit their beliefs.

At the very least, consider yourself blessed that you found a good doctor. If any of your other children begin to manifest seizures of a familial type around 10 years of age, as the second article I cite suggests, you know who you can trust and who you can go to for advice on how to proceed.

Thank you for educating me. I will share my information with my fellow medical students and perhaps future tragedies can be averted and bonds of trust between patient and doctor will not be broken.

Kind wishes to you and yours,
Not My Second Opinion

Anonymous said...

I came across your blog hrough flea's and just wanted to say I am very sorry for your loss. That is all really, just from one mother to another, I'm so very sorry.

Amy said...

Non crazy mommy, you really have some nerve coming here and posting your "non apology."

How can one expect a bottle feeder to understand child-led weaning? There is nothing wrong or weird about nursing until age four.

You work in an oncology clinic. Are you a doctor? Do you know what did cause Marissa's death? If so, please enlighten the rest of us. If not, shut up and leave barefootmama alone.

And there are numerous reasons why parents choose to homeschool-- religious, philosophical, educational. Some of their children are "fully" vaccinated according to the CDC schedule du jour, some are partially vaccinated, and some are completely unvaxed. All three of those possibilities exist in public schools, too, as every state except for West Virginia allows for exemptions. And homeschooling doesn't necessarily mean that the children are socially isolated from their peers. I was public schooled and met homeschooled children in community theater, girl scouts, and sports.

But calling someone crazy because they do things a little differently than you? Not cool.

Dani said...

Marissa's story is so sad and tragic. I am so sorry for your loss.

I lost my daughter in 2002. She was 5 months old when she passed away from complications of her congenital heart defect. I couldn't imagine seeing her story on another blog.

My heart hurts for you and for Marissa.

And, for the record, I am kind of a crazy mom and I take pride in that. It's the non-crazy mommy's that you have to watch out for.:) I feel for this woman's children, I wonder how they're going to grow up with such a close-minded and hateful parent.

Again, I am sorry for your loss. I will light a candle in little Marissa's memory this evening.

sympathetic mama said...

non crazy mommy - the fact that you even chose that "name" for yourself speaks volumes about what you don't understand and your unwillingness to acknowledge the fact that there is another way of looking at the world around you.

I'm embarassed for you - you've posted out of your own ignorance and that's a shame.

barefoot mama said...

Not my second opinion:
I appreciate your post. I have to admit it was hard to sift through, though.

I do understand that the particular reaction Marissa had is a rare one. You are correct in saying that it does not make it alright to dismiss it..

I disagree that pertussis is necessarily serious. It can be, but not generally in an otherwise healthy person. I question whether or not that particular vaccine is even effective when so many who are vaccinated against it contract it.

Honestly, your description of tetanus sounds so much like many of Marissa's seizures. Do you not think she suffered for 8 years? Her suffering was horrible and often unrelenting. And it did ultimately end in her death, despite what we tried desperately to do for her.

I disagree that flea is attempting to protect his patients. I believe he is attempting to protect the ideology he was fed in med school and he has completely forgotten how to listen and be a compassionate human being. You will understand the bad taste he has left in my mouth.

My position is clearly backed by the literature. In fact, all one has to do is read the package inserts for DTwP, which was the first shot causing the initial reaction.

I am certainly blessed to have a good doctor now. I wish we had before.

I do hope you will share this with your peers, but do not be surprised in the slightest if they refuse to listen.

If you can make it through the rest of your training while remembering to listen, kudos to you~ that will not be an easy task. But you have gotten a good start simply by virtue of the fact that you chose to listen here. Good luck to you.

barefoot mama said...

For those who posted in sympathy and support~ thank you.

Dani~ I am so very sorry you lost your baby too.

Barefoot Mama

JSmith5780 said...

I, too, found you through Flea. I am not going to waste time commenting on all that occured.

But I do want to say that my son was a perfectly normal baby as well. At 16 months he began having seizures. By 17 months he had lost all speech and was a listless rag doll. It was horrible to watch and live through. I was 8 months pregnant with twins at the time. Basically I want you to know that I understand how difficult it all is/was. We were fortunate enough to get control and with intense therapy he is doing okay right now. I know there are no guarantees, but I will live in the right now and remain vigilant at all times.

I agree that it's possible vaccines can play a role. Do I think they caused Austin's problems? No. Did I continue to vaccinate, yes, BUT at the ped and neuro's advice we waited until he was seizure free, we spread them out AND we skipped Pertussis altogether because the CDC lists seizures as a contraindication to vaccination.

The point of your post was not only to memorialize your daughter, but to make people aware that nothing is 100% safe, and we as parents have to research and advocate for our children...all the time.

I would hope a new parent would read your post and not necessarily walk away anti-vax, but walk away thinking maybe they should inform themselves better and not just 'go with the program' all the time.

I hope you start to heal soon.

WendyLou said...

Barefoot Mamma -

I'm so very sorry for your loss of your dear Marissa. I also sorry that your story got drawn into another person's drama. I have saw your postings aroung MDC, and I am also a usual reader of Dr. Flea. Small world and this was very sad. I've posted several very personal things on my blog and would feel violated if someone did what happened to you with my posts. My blog is my very safe space. I'm sorry yours was violated. Do you mind if I link to your blog?

Hugs to you. Tears for Marissa.

Anonymous said...

Great a first year medical student who just figured out how to use pub med. Talk about dangerous.