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Posted: 20 Jan 2012 07:13 PM PST
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Posted: 20 Jan 2012 04:54 PM PST
NYT: New autism definition may exclude many – TODAY Health – TODAY.com.
"The proposed changes would put an end to the autism epidemic," said Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine and an author of the new analysis. "We would nip it in the bud — think of it that way." Yup. Since we can’t make those pesky numbers go down as we continue to add those vaccines (hi flu shot to pregnant women, hello Gardasil!), we’ll just change the criteria and voila! No more ridiculous autism numbers climbing every year! We just knocked it back to 1:5000. Guess there isn’t an epidemic after all. Or wait, try this one on: Well, we don’t actually want to put any effort into studying things that actually help those with autism so we’ll just make it harder to diagnose people with it. Those crazy moms and dads out there that actually believe they are recovering their kids, well, they never had autism to begin with. See how that works? They actually had Social Communication Disorder. Yeah, we just made that one up for the new DSM, we thought you might like it. *pats themselves on the back* We wanted to make sure we could pull a lot of people out of the autism group and get those numbers down that way, too. Yanno, since we don’t want to do anything and all. Those of you with Asperger’s, good luck getting reevaluated and getting that autism diagnosis and for those with PDD/NOS…you already knew that was the diagnosis stupid doctors gave when they didn’t want to commit to autism because “he’s just a boy, they talk later” or “she’ll catch up with time” or “it’s just a phase” or “autism is not a good diagnosis, you don’t want that and it’ll keep us from having to give you as many services too. “ Yeah, you’ll never get that autism diagnosis. And now we will have a severity scale so we can tell you exactly how impaired you are because you don’t know any better. So what if you can’t shower without being prompted or feel hunger? We’ll make you write notes to yourself and maybe you’ll remember to read them as they hang on the refrigerator of your, oh wait, we also took away your group home so you don’t have a refrigerator or walls in a dorm room to hang those notes. Sorry! We have to take your aide away too! I hope your parents are alive and able to take you in. Maybe you have an aunt or uncle? Distant cousin? Because you don’t get medicare or disability anymore, either. See? It’s not really an epidemic! Because we just knocked those numbers back down and it’s all good now. No more autism. Because changing the criteria made them all go away. Poof. And they call us crazy for doing things like giving them a gluten/casein free diet or some other such off the wall wackiness. Good lord, how could they deprive their kids of Wonder Bread? How much more, exactly, does the AMA, APA and CDC have to do before people realize we aren’t that crazy? **Don’t be surprised in a couple years when Social Communication Disorder is miraculously 1:90 with no services available. |
Saturday, January 21, 2012
Gryffin's Tail
WordPress.com
Sunday, November 6, 2011
Low levels of zinc linked with autism in children
Interesting that they say that nothing should be concluded from this. What about concluding that it's worth testing to see if your asd kid has low zinc? Gasp! What an outrageous thought. How very unseemly to be so forward thinking. You should very well let your children run around with low zinc because low zinc is completely unimportant. As a matter of fact, just stop giving all kids a daily multi-vitamin because we don't them. Nutrition means nothing. There's nothing to see here, move along!
Is it really so hard to just say, well, maybe we should look into this? Why is there such a strong need to discredit anything that might support what the crazy autism moms have been saying for decades? Chew on that question for a while.
I think I'm going to start a category of all the stupid shit the media/governments/organizations/etc. say and do to try to prove themselves right while doing their damnedest to make us look bad.
Hypocrites and idiots. Perfect name for it. Look for it on the right.
Monday, October 24, 2011
Took the plunge
We've done mostly everything biomed and after 5 years, we have come to a point where life has to improve for everyone in the family. My son doesn't really have hyperactivity issues but has severe focus issues. His ADD has really come in the way of his own confidence and our enjoyment of each others' company. I'm always yelling at him and he's always too distracted to care and it always ends in tears. No fun for him and makes me feel like the worst mommy ever. It's really not pretty.
He knows he can't concentrate and it hurts him so much. He doesn't understand why he can't think like everyone else and he always feels like a failure. Unbeknownst to me, the first week of school his teacher asked the class to set goals. His goal was not to make good grades, make lots of friends or even be the line leader. His goal was to concentrate better. Talk about a heart-breaker.
We picked up the Ritalin on Friday. We went to our ped for it since my DAN doesn't generally do stimulants. Our ped started him Ritalin but he likely will not stay on it. It's the oldest and most well known drug and he wanted to start with something they know the best. For the first month, he stays on normal Ritalin (not slow release) because it clears the system fast and if he does have a reaction, we want it out as soon as possible. So for the first week, we just stick with 2x a day of 5mg each. We watch and report back to the doc a week later. Then we'll adjust the dose again and titrate up as we feel necessary to get to the right dose. Once we get there, we'll consider going to long acting and possibly a newer drug that maybe has fewer side effects.
Since we started Saturday, I've noticed that he doesn't sleep very well and has very hard time falling asleep. He already gets 1mg of melatonin at night. I'll be upping his dose to 3 mg and see if that helps. It is a side effect of stimulants.
Today was his first day of school on ritalin and his teacher noticed a huge improvement. She said she knew just by looking at his handwriting that he had started (I hadn't told her but she was aware it would happen).
I never wanted to go to meds but biomed just never made a difference. I would never recommend someone try meds first before biomed but for those of us that have done our due diligence, I'm all for doing what works. I resisted long enough. I've known enough ADHD people personally that have told me how medication has made all the difference in the world for them. How they finally felt normal. I can't and won't deny my son that chance. I put it off as long as I could because I just never felt comfortable putting him on it so young (especially after a Dr. put him on antidepressants when he was 3 to disastrous effects).
Now he's 8, I'm still not happy about it but I feel like it's really the only thing left for me to do. I might end up regretting the decision but I can't tell you how easy homework was today. He's outside playing right now because he got done with his homework faster than ever and not a single instance of yelling. There was actually quite a bit of humor involved as he came up to me as "Paper Head." He put his homework in front of his face and walked around with it until I checked it. Laughing during homework time with him has always been rare.
We call it his "thinking medicine" since it's to help him think better. Today I struggled with my NT son and his homework and my ASD son said NT son needed some of his thinking medicine. ;)
So for any of you struggling with the decision after years of biomed, don't beat yourself up if you go there. My son is recovered from autism through biomed. His ADD has only gotten worse. Maybe with this, life will be typical for him and that's really what all of us want.
Monday, October 17, 2011
Antiviral drugs may slow Alzheimer’s progression (The University of Manchester)
Monday, September 19, 2011
All the tests that folks talk about
All the tests that folks talk about « Gryffin's Tail:
This was from a conversation on a list.
Great answer Cheryl. Do you have a blog entry on this? Would be a nice addition if not.
(redacted)
On daily basis, there are many tests are talked about on this mailing list and since I am a beginner with all biomed, everything sounds to me like alien. I find all this information super overwhelming and takes time to digest everything.
So here goes my questions -
- All the tests that anyone talks about, are they all suggested and ordered but you (DAN!) doctor?
Any MD/DO can order any of the labs. Some you can order yourself
- Do you need special lab to do these tests or regular labs do these tests?
I rarely use a specialty lab. Great Plains and Doctors Data take insurance, though. I think of the specialty labs, the most important one is the CSA and OAT. Not all of the information is reliable but it's defnitely helpful.
- How often these tests are covered by the insurance? (of course, it depends on the insurance but if you have a 'good' insurance, like we have Oxford)
The only test that I've found not to be covered is food allergy testing. IgG testing just isn't mainstream enough. But only if the lab you see takes your insurance. I do believe you can self submit to your insurance if the lab doesn't take it but it will be at a lower rate.
Other labs, like the non-specialty labs are usually all covered by your plan but definitely still depends on how good your coverage is.
- Is there any comprehensive list of tests somewhere up on the net those can be performed for testing and treating our kids with the explanation i.e. what this test is for and what the result means? So that I can read up on that before I approach any doctor.
Oi. That's a lot of possible tests. But the ones to start with would be a **CSA (comp. stool analysis) and **OAT (organic acid test). **Food allergy (or you could do a food journal instead... but if you don't, Alletess has one for $89 that you can have your doc sign off on if willing.) --these 3 are not, imo, something you need to do often.
But a good place to start for a newbie to get some baselines.
viral titers: HHV1-6, any vaccine titers you want,
AntiDnase and ASO titers (PANDAS),
Ig and all subclasses,
CBC + CMP,
T&B lymph/NK cells,
homocysteine
Things to consider at some point:
**Urine Amino Acid (specialty lab - I don't think it's that important but if you have proten issues, could be better than nothing.)
thyroid
cortisol
other hormones (pregnenelone, progesterone, testosterone, IGF-1)
Vitamin D (bet you money you're low! ;) )
other vitamins and minerals (ferritin, zinc, copper, etc)
**hair metals test through GPL/DDI(or Labbio urinary porphyrins if you prefer to consider IV chelation - we do AC so hair test only - and not expensive if not covered by insurance)
**Yasko genetics test ($500/one time deal specialty lab not covered by insurance and nothing comparable in regular labs but I do believe you can get *some* of the genes through a regular lab. I think Toni might be able to tell you which ones. These are all metabolic genes.)
Toxoplasmosis
Mycoplasma
Lyme - you can get the Western Blot through a local lab but it's not as sensitive as a specialty lab (**Igenex) which is not covered by insurance. What makes this specialty lab special is that it actually gives you parasite information for all of them and more band information. Western blot I believe only test for borrelia and the other major one that I can't think of right now. The lyme parents can give better info on it than I can. It's expensive, I think it's $1800.
I marked all the specialty lab tests with a ** and really, they aren't that many and not stuff you need to do all at once or too soon. You could easily break them up if you choose to do them.
As for how to read them...that's steak, not popcorn*. The specialty labs will have explanations and nice little KISS charts that tell you exactly what's going on with an explanation attached. They aren't fully explained well but it's a start.
The regular labs, well...it's hard to tell a mainstream doctor that most people are low in vitamin D to even get one to test it (which I find funny that they say most people are *not* low in it but will never test anyone to know that!) And GPs tend to not understand half of the labs that cross them anyway. Any mainstream endocrinologist will tell you that the lab reference ranges for thyroid are too wide and where most GPs tell you it's fine because it's in range, an endocrinologist will tell you that you need thyroid. Soooo, how to read them is a loaded question. High viral titers a mainstream doctor will tell you that it just means you've been exposed. They don't take anything else into consideration. It's an impossible question to answer, unfortunately.
*For an explanation, click here. I shamelessly stole it from Patrick Rothfuss. He rocks. Buy his books, they also rock.
This was from a conversation on a list.
Great answer Cheryl. Do you have a blog entry on this? Would be a nice addition if not.
(redacted)
On daily basis, there are many tests are talked about on this mailing list and since I am a beginner with all biomed, everything sounds to me like alien. I find all this information super overwhelming and takes time to digest everything.
So here goes my questions -
- All the tests that anyone talks about, are they all suggested and ordered but you (DAN!) doctor?
Any MD/DO can order any of the labs. Some you can order yourself
- Do you need special lab to do these tests or regular labs do these tests?
I rarely use a specialty lab. Great Plains and Doctors Data take insurance, though. I think of the specialty labs, the most important one is the CSA and OAT. Not all of the information is reliable but it's defnitely helpful.
- How often these tests are covered by the insurance? (of course, it depends on the insurance but if you have a 'good' insurance, like we have Oxford)
The only test that I've found not to be covered is food allergy testing. IgG testing just isn't mainstream enough. But only if the lab you see takes your insurance. I do believe you can self submit to your insurance if the lab doesn't take it but it will be at a lower rate.
Other labs, like the non-specialty labs are usually all covered by your plan but definitely still depends on how good your coverage is.
- Is there any comprehensive list of tests somewhere up on the net those can be performed for testing and treating our kids with the explanation i.e. what this test is for and what the result means? So that I can read up on that before I approach any doctor.
Oi. That's a lot of possible tests. But the ones to start with would be a **CSA (comp. stool analysis) and **OAT (organic acid test). **Food allergy (or you could do a food journal instead... but if you don't, Alletess has one for $89 that you can have your doc sign off on if willing.) --these 3 are not, imo, something you need to do often.
But a good place to start for a newbie to get some baselines.
viral titers: HHV1-6, any vaccine titers you want,
AntiDnase and ASO titers (PANDAS),
Ig and all subclasses,
CBC + CMP,
T&B lymph/NK cells,
homocysteine
Things to consider at some point:
**Urine Amino Acid (specialty lab - I don't think it's that important but if you have proten issues, could be better than nothing.)
thyroid
cortisol
other hormones (pregnenelone, progesterone, testosterone, IGF-1)
Vitamin D (bet you money you're low! ;) )
other vitamins and minerals (ferritin, zinc, copper, etc)
**hair metals test through GPL/DDI(or Labbio urinary porphyrins if you prefer to consider IV chelation - we do AC so hair test only - and not expensive if not covered by insurance)
**Yasko genetics test ($500/one time deal specialty lab not covered by insurance and nothing comparable in regular labs but I do believe you can get *some* of the genes through a regular lab. I think Toni might be able to tell you which ones. These are all metabolic genes.)
Toxoplasmosis
Mycoplasma
Lyme - you can get the Western Blot through a local lab but it's not as sensitive as a specialty lab (**Igenex) which is not covered by insurance. What makes this specialty lab special is that it actually gives you parasite information for all of them and more band information. Western blot I believe only test for borrelia and the other major one that I can't think of right now. The lyme parents can give better info on it than I can. It's expensive, I think it's $1800.
I marked all the specialty lab tests with a ** and really, they aren't that many and not stuff you need to do all at once or too soon. You could easily break them up if you choose to do them.
As for how to read them...that's steak, not popcorn*. The specialty labs will have explanations and nice little KISS charts that tell you exactly what's going on with an explanation attached. They aren't fully explained well but it's a start.
The regular labs, well...it's hard to tell a mainstream doctor that most people are low in vitamin D to even get one to test it (which I find funny that they say most people are *not* low in it but will never test anyone to know that!) And GPs tend to not understand half of the labs that cross them anyway. Any mainstream endocrinologist will tell you that the lab reference ranges for thyroid are too wide and where most GPs tell you it's fine because it's in range, an endocrinologist will tell you that you need thyroid. Soooo, how to read them is a loaded question. High viral titers a mainstream doctor will tell you that it just means you've been exposed. They don't take anything else into consideration. It's an impossible question to answer, unfortunately.
*For an explanation, click here. I shamelessly stole it from Patrick Rothfuss. He rocks. Buy his books, they also rock.
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