America, how does it feel to wake up and learn that you can't have healthcare tests that you think you or your loved one needs? Welcome to the autism treatment world. Kinda sucks, doesn't it?
This week we learned that neither mammograms nor pap tests are as necessary as previously recommended. So there will be less testing.
I didn't know that the pap smear (scrape?) could lead to procedures that could injure the cervix. But I recall being a young woman and having my gynecologist perform a procedure that hurt like hell - "cauterization," he called it. That's Latin for "insert a small blow torch and press the on button." I was such a poor healthcare consumer it never occurred to me to ask what he was doing or why. The New York Times writes (HERE):
Dr. Iglesia said the argument for changing Pap screening was more compelling than that for cutting back on mammography -- which the obstetricians' group has staunchly opposed -- because there is more potential for harm from the overuse of Pap tests. The reason is that young women are especially prone to develop abnormalities in the cervix that appear to be precancerous, but that will go away if left alone. But when Pap tests find the growths, doctors often remove them, with procedures that can injure the cervix and lead to problems later when a woman becomes pregnant, including premature birth and an increased risk of needing a Caesarean.
Was I one of those women for whom the cauterization was unnecessary, or did that doctor save me from cervical cancer? I have no idea. If you know a woman who died of cervical cancer, these new guidelines will set your hair on fire. If your breast cancer was found on a yearly mammogram I'm sure you're angry too. Understandably so. We each bring our own perspective and needs to this healthcare equation.
In the autism world, there are myriad tests and treatments that are helping ameliorate behaviors and boost progress by addressing the medical conditions that can cause pain, confusion and poor brain functioning. Think of how you feel when you have PMS or a migraine. Could you sit in school all day or take the LSAT's or make a presentation at work if you felt very sick? Of course not. Now try to do it when you have little or no speech to convey how you're feeling. You might scream, or kick or scratch or bang your head.
Some of us know families whose kids have lost their diagnosis and are mainstreamed in school and headed toward full, independent living because of these tests and treatments. For others, this treatment can mean the difference between life in an institution, sedated on powerful medications and life in a group home, among peers and within the community.
And yet - the vast majority of us have no access to this autism medical world because the "powers that be" who control what's recommended and covered tell us the tests fall into the category that is the insurance kiss of death, "not medically necessary." For every Dr. Tim Buie at Mass General Hospital treating the GI problems associated with autism, there are a hundred GI docs and pediatricians who will laugh you out of their office for suggesting that food can affect functioning and behavior. Even the one treatment that is considered scientific, ABA therapy, is often off the table for us when it comes to insurance.
This weekend, The Chicago Tribune will run an article about autism treatments from skeptical point of view. Even after interviewing parents who have changed their children's lives for the better, they'll focus on the few controversial treatments that always get media attention and ignore the real progress. I'm not sure what their agenda is, and why learning that some kids are improving and even losing their autism diagnosis isn't considered worthy of a ticker tape parade on Michigan Avenue.
When you read that article (assuming anyone reads The Trib any longer) think of how you feel knowing that you, your wife, daughter, sister is also losing medical care that could help ensure a healthier, safer life.
By the way, I can help those of you wondering about your next mammogram or pap test. There are three magic words that we in the autism world know all too well: Out of pocket.
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If there was no Gardasil vaccine - I would likely feel differently. I guess I just fear the time when women start dying from cervical cancer at rising rates...and we start hearing about how "the vaccine could have prevented all of these unnecessary deaths".
I'm sick of posting on other sites where the pro-vaccinators are excitedly talking about when their sons will also be able to get the cervical cancer vaccine. What is wrong with us? Boys getting vaccinated to prevent a disease they lack the body parts to contract?!? This is all so frustrating. Maddening!!!
I remember when my brother was diagnosed with cancer in the 70's. Since the outcome according to his doctors was pretty much a forgone conclusion, my parents took him down to Jamaica for an alternate approach. The focus they provided was a bit of both worlds, but the most significant portion of it was focused on diet, on well-being, etc..
Our approach to medicine is so mechanical, and many times so devoid of humanity. I read these stories with Kim, and some of the others here, and they are painful, but I differ with almost everyone here. Not only have we become slaves to the out of control costs imposed on us by health insurance and medicare/aid, but so many feel government is our solution. You think our health care is devoid of humanity now? Wait till it becomes a managed by Washington operation.
Just my 2, and sorry for your medical difficulties.
It's frustrating having two vaccine damaged kids and lacking the finances to treat them as aggressively as they really should be treated!
We're doing biomed and my kids have improved significantly - but, we just don't have the money to do all of the needed tests and interventions. Instead of returning for a 1-3 month follow up, we usually wait 6-9 months because we just can't afford to go back when we "should". Instead of ordering all available tests, the doctors pour over charts with us to determine the "best bang for our buck". While we've been lucky to have some testing (bloodwork) and medication (anti-fungals) covered by insurance...it's still maddening because so little is paid for. Now, I'm scared - as I sit on a mountain of debt and begin to receive notices of rising interest rates - even though I'm never late on a payment. We just can't get ahead.I know my kids could be doing better - but, we can't afford the things that would make this a reality.
I wish society would see that we're all going to pay for these kids - in one way or another. It makes much more sense to care for them now and work to ameliorate symptoms than to imagine the social security, medicare and other costs that'll be paid out on their behalf if they don't "recover".
Keep fighting for your girls - and for all of our families - we are grateful!
You said it all Kim. I'll just add that even for those who can pay out of pocket for the special test you described there are tests available in other states that are not available to me because we live in NY. Just not available? What about that OATs test we took in 2006? Couldn't get it in 2007. Fortunately we can also travel to see docs in other states. All of this takes an incredible amount of time, fortitude and money. It's galling.
My three boys received a grant from NAA for biomedical treatment. It was wonderful, and they have improved. How can a family like mine continue to pay out-of-pocket? This is very disheartening, but we decided to continue somehow.
I'm not sure what to make of this new rule on mammograms because the radiation issue has always bothered me. I think the pap smear change is ludicrous-- they're going to do less of them simply because some docs are too handy with the laser? Why not set regulations on the risky procedures? I agree it's because the more cervical cancer there is, the more women will be cornered into thinking they need the vaccine. This makes me wonder if they're about to launch a breast cancer vaccine in the near future.
We're all meat and the world is a giant CAFO, basically. We pay between $20,000 and $30,000 a year to keep our vaccine injured kids out of the looming institutional "feedlot"-- where they'd be headed and profitably drugged to oblivion after my husband and I are gone if we didn't try to recover them.
How do I feel? I feel like I'm watching my son struggling to stay afloat in the rough waters off the beach of I Don't Give A Crap Island and the 12 lifeguards standing around are either deaf or choose not to hear me. How do I feel? I feel like swimming out there to save him or to sink right along his side. However, if I am able to drag my son out of the water, to breathe life back into him, then by God, the entire island of I Don't Give A Crap will end up a lot like Atlantis.
Which reminds me, a little while ago we drove past a pasture with horses in it, and my son Ben said, "Horses are a lot like cows daddy."
The disparity against kids with autism is a lot like a crime against humanity.
Ain't that right Ben?
You know, the messed up decisions and messages being given to the public might cause them to look into other ways to heal their body. Maybe this is a blessing in disguise. Too many rely only on a mainstream doctor for their care. There are other practitioners out there with equal or better success rates with their patients. They don't have Big Pharma's money backing them up and taking them on golf vacation trips, so no main-stream-media press for them.
This child is functioning so well - above grade level and an amazing athlete. It's hard to believe where we were three years ago. I'm incredibly grateful that we didn't wait for mainstream medicine to do it for us - we'd still be waiting I suspect.
I am adding my voice to those demanding coverage for these interventions that work and wind up costing society much less in the long run.
Tests for breast and cervical cancer - if conducted correctly - are like that too.
One time I asked my pediatrician if I could have both my ASD and "typical" child tested for parasites and yeast. She said, very dismissively, "Oh, I wouldn't even know how to order that one... I don't know anything about that." --and then never ordered the tests. She went on to tell me that my kids don't have those problems (a psychic doctor?). (Never went back to her)
We have these "people" who tell us that we are making this stuff up... that our kids do not have GI issues and Heavy Metal issues... but then we try to get tests to prove it ---and we have to drive or fly 5 hours to find a doc who doesn't say, "Oh your kid doesn't have that problem."