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Monday, April 27, 2009

Rates

We just got Ellie's developmental eval in from Case's Project BRIDGE. She has made enormous gains in some areas in the last year. These include two big areas of social-emotional development, relational behavior and self-awareness. Her rate of development increased by 69% in the first area and 67% in the second. This means that she developed in those areas that much faster because of the intervention (there is a statistical way to explain this that I can only do in my head, but probably not well in print). I am thrilled. She also showed noticeable improvement in discrimination behaviors (cognitively, not culturally) and object use. I can't emphasize enough how much this therapy works, and what a difference it has made for a kid like Ellie. I wish everyone had a Dr. Wiggers, a Miss Carolyn and a Miss Sung Hee. Bless you girls.

Sunday, April 19, 2009

Composition

Ellie likes to compose music now spontaneously. I think it's a way for her to use language in a way that means something to her and means something to someone else. When I get Blogger to finally upload a movie, I'll post it.

Monday, April 6, 2009

Lee-Silsby, Part 2

I called Lee Silsby pharmacy this morning to get the scoop. I wanted to hear what the guy had to say. Here is the conversation. I used my cell to record my responses. His are to the best of my recollection:

[pharmacist gets on the phone]This is the pharmacist.
[ME] Hi, I came across your info online and I was calling to find out about your autism treatments.
[P] Do you have a child with autism?
[ME] I have a child with PDD.
[P] well, we have many options for you. I would suggest you start at the website www.autism.com for more information about biomedical autism treatments.
[ME] sure. well, I just want to know what you offer.
[P] well, kids with ASDs have mineral and vitamin deficiencies.
[ME] do they?
[P] yes.
[ME] how do you know?
[P] what?
[ME] how do you know that every child on the spectrum has this?
[P] well, the biomedical research shows it. it comes from their blood draws.
[ME] I guess I don't understand, if autism is neurological, what a blood draw is doing in the mix.[P] well, are you seeing a pediatrician?
[ME] of course.
[P] most pediatricians are not going to go the biomedical route. they won't offer you the type of testing biomedical physicans offer. they tell you it's neurological because that's what the AAP tells them. we work with several biomed doctors who have had amazing results using both our treatments and then other treatments they have designed.
[ME] but these guys, they aren't at UH.
[P] no.
[ME] they don't practice in a hospital.
[P] biomedical isn't part of the mainstream medical community. did you see Larry King the other night? there was a doctor from UH on with Jenny McCarthy, I've met with him at conferences and he is interested in what we're doing but won't commit to research on it.
[ME] Max Wiznitzer, yeah. I know him.
[P] you do?
[ME] he's my daughter's neurologist. and I have to say, I don't think Max is all that interested in what you're doing. maybe he was just being polite.

[silence here]

[ME] so you offer vitamin supplements, it looks like, and topical treatments.
[P] yes, the vitamin supplements help kid with ASD replenish what they are missing, and the topical treatments help detoxify their systems.
[ME] and this detoxifying, this will help with the flapping?
[P] I'm sorry?
[ME] welll, a lot of kids flap, you know....they have a lot of gross motor things going on...and usually it's some kind of behavioral modification that teaches them to self-monitor their bodies...I am wondering what this detoxification does for the flapping.
[P] look, if you just go to the website I mentioned, you'll get all the info you need about how our supplements cure some of these symptoms.
[ME] cure them?
[P] I have had patients all over the world be cured of many of their symptoms through our products. We also offer vitamin B12 shots, dietary programs...
[ME] people are just giving their kids shots?
[P] oh yes.
[ME] do their tell their doctors they are doing this?
[P] sometimes not, no.
[ME] and you're ok with that?

[silence here]

[ME] I am just still not getting how your stuff works and how you are getting reimbursed by insurance companies for it, when I can't get mine to pay for $3000 in outstanding OT bills we have from the Cleveland Clinic, which was prescribed by a doctor. How is your stuff getting covered and it just seems like kitchen brew?
[P] I don't have half an hour to explain this all to you.
[ME] but you are willing to sell me god knows what to rub on my kid and leech stuff out of her body?
[P] I am not sure what you want me to tell you.
[ME] well, here's what I'm going to tell you. I am boycotting your pharmacy because I think what you are doing is ethically wrong. You are selling stuff to desperate parents because they think their kid is broke and you can fix them.
[P] We have research from thousands of parents...
[ME] the plural of anecdote is not data.

[here's where I hung up.]

Boycott Lee-Silsby Compounding Pharmacy

The Lee-Silsby Compounding Pharmacy in Cleveland Heights is making so-called "compounded medicines for autism." The claim (in testimonials, because there is no refereed, IRB controlled research) is that these drugs magically (presumably with sparkles and fairies and rainbow colored unicorns) take away all of the symptoms of ASD. They also sponsor a website, Age of Autism, which is anti-vaccine, anti-medical, pro-Jenny McCarthy (I cannot believe I actually have to type that). Chelation is one of the so-called treatments that Lee-Silsby supports (a treatment to remove heavy metals from the body, a treatment which has been discredited scientifically and which is dangerous to children). Parents are cooking up treatments for their child's autism and administering them with little to no medical supervision. In my opinion, this is tantamount to child abuse. It's funny that these clowns rail against Big Pharma and all the money that they allegedly make on vaccines and traditional psychopharmacological treatments for ASD related conditions, but who is asking Lee-Silsby how much they are making on their baking soda-toothpaste-hocus pocus--voodoo mess that they are selling to desperate parents? You bet your sweet bippee I am.In the meantime, I realize that it is important to support Cleveland Heights businesses. However, as a parent of a child with an ASD, I cannot support a business that promotes medical quackery and sells it as science. You make your own decision.

Saturday, April 4, 2009

Oh no, not again.

http://www.cnn.com/video/#/video/us/2009/04/04/lkl.jim.jenny.autism.pt1.cnn

This is worth it just to see Max Wiznitzer, who in my opinion could slam dunk Jenny McCarthy into cold storage blindfolded.