Jump to content
ACN Latitudes Forums

Cunningham lab will be open


Recommended Posts

Weird. I just spoke w/someone over at Dr. Latimer's office who said that they were not opening any time soon...do they have a target date?

From the website:

We anticipate, at this time, to have the clinical laboratory operational by the end of 2012 or early 2013.
Link to post
Share on other sites

Was anyone else surprised by the front and center quote "Compassionate testing for treatable forms of Autism Spectrum Disorders"?

I'm stunned at the inference that PANDAS = a treatable form of ASD would be made so prominently.

Link to post
Share on other sites

Jag 10 - I was stunned and it bothers me greatly. Yes, I agree Pandas can cause autistic features but I don't think it should be featured as a cure for a possible cure for certain types of autism. It feels wrong. It feels as if some marketing team is trying to feed off the desperation and hope of parents who have kids with autism. Makes the whole thing seem like they are selling snake oil. Again, yes, I know kids get autistic features but it is entirely different than classic autism. An autistic child can get pandas and get more severe. An autistic child can get OCD and tics after strep. But the promo on the site just seems so wrong. It bothers me. I KNOW kids can look totally autistic with sudden onset pandas. But the promo doesn't feel right.

Link to post
Share on other sites

Was anyone else surprised by the front and center quote "Compassionate testing for treatable forms of Autism Spectrum Disorders"?

I'm stunned at the inference that PANDAS = a treatable form of ASD would be made so prominently.

I'm really confused about that! I asked about that on facebook under the thread that Dr. T started. No response or thoughts from anyone.

 

I absolutely believe that PANDAS/PANS can look like ASD, but personally, I feel it muddies the water on what PANDAS/PANS really is. Also, I'm worried that being too closely aligned or thought of as a "biomedical" treatment for Autism is going to just marginalize PANDAS/PANS even more or just be outright dismissed by a large segment of mainstream doctors. It feels like a marketing ploy.

 

I would just love clarification on it.

Link to post
Share on other sites

Does Dr. Cunningham make these types of statements in her presentations?

I agree it muddies the waters. If a parent whose child fit pandas criteria w/o ASD characteristics sees that front and center, they will be very confused. Not to say the overlap of ASD characteristics and pandas for some children shouldn't be mentioned somewhere, but the marketing of that statement is striking.

Maybe it has something to do with the start-up donations.

Link to post
Share on other sites

Was anyone else surprised by the front and center quote "Compassionate testing for treatable forms of Autism Spectrum Disorders"?

I'm stunned at the inference that PANDAS = a treatable form of ASD would be made so prominently.

Well, I like it...I do think my child's autism was caused in large part by her PANDAS, and I think they'll find that a large # of autistic people have PANS. I wonder how many of the study participants had autism?

Link to post
Share on other sites

I also think my child's autism was caused by PANS (including lyme in our case.) When he was treated with IVIG, his social skills jumped 7 years overnight! This doesn't happen if the cause is truly not related. How much more "neurotypical" would he have been if we had figured this out, and treated earlier? I have also met quite a few children in my work who appear quite autistic, and when treating as PANS, they improve tremendously. I agree with Peglem I like it. And, for the record my DS was part of the study.

 

I'm updating my comments on this. I also think that my son's "Autism" was caused by strep + possibly congenital lyme (not positive, but pretty certain) + another tick bite, which produced bartonella + viruses that never cleared + heavy metals + mold + metabolic disorder + who knows what else created the "perfect storm". All of these are considered PANS, and all of these can combine to cause inflammation in the brain, which probably is the cause of the autistic-like symptoms in many kids (who have always been considered to have "autism.")

 

I work with Autistic kids (besides having one of my own), and I can tell you that these kids frequently get worse when sick, frequently have sudden overnight onset (or when born with it, there is frequently a link with the parents having had a lot of strep, lyme or something else, as well as autoimmune disorders). Personally, I fully believe that every autistic child should get a PANS workup. I definitely do not believe that it muddies the water, and I'm not sure why people are concerned about finding biomedical reasons to treat Autism. I have seen way too many kids (including my own son) get well when treated biomedically. I really think that in some cases, this goes back to our original belief that PANS was only strep, and in too many cases, it just isn't.

 

And, if you'll notice, Dr. C. does not say that it treats all forms of Autism, but rather "treatable" forms of Autism (although personally, I think that if we search hard enough...like all of us on this forum have done for our own kids...we may eventually find what triggered our children's "Autism". Keep in mind that there are now 1 in 50 kids with Autism. And, the NIMH just finished up a study on Autistic kids showing that some Autistic kids actually are able to have their label removed. This just clearly changes the whole picture and question of "what really is Autism?" Personally, I think it is treatable (I'm not saying curable in all cases), if only to seriously decrease the symptoms...just like many of our kids on this forum, especially if found early.

Edited by tpotter
Link to post
Share on other sites

I also think my child's autism was caused by PANS (including lyme in our case.) When he was treated with IVIG, his social skills jumped 7 years overnight! This doesn't happen if the cause is truly not related. How much more "neurotypical" would he have been if we had figured this out, and treated earlier? I have also met quite a few children in my work who appear quite autistic, and when treating as PANS, they improve tremendously. I agree with Peglem I like it. And, for the record my DS was part of the study.

My daughter was in the study, too.

Link to post
Share on other sites

It would be my guess that many kids on the autistic spectrum would get a positive test result on this test. I think many kids on the spectrum have bad antibodies floating around. It would be an interesting study to see. If they are going to promote treatable autism, I would like to see a chart/research comparing TS Kids, pandas kids and autistic kids. I would love to see those numbers.

Link to post
Share on other sites

I also like it. My son's aspie features are falling by the wayside very slowly as he improves with antibiotics for Lyme and Bart and we keep the strep out of the picture. I think many autistic children have immune system disregulation.

 

I do not see it as false hope, I see it as hope.

 

Cobbie

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...