Cunningham lab will be open

[Kayanne]

Personally, I think it's more a case of misdiagnosed autism and not that PANDAS is a treatable form of autism. Is there mention of autism throughout the literature of PANDAS? I know the Hornig paper mentions autism behaviors briefly, but I'm pretty sure most of it has been limited to OCD, TS and the other common co-morbidities.

 

I would love to see the numbers of "autistic" children who participated in the study (I put that in quotes because I believe it is a mis-diagnosis in these cases), and know the numbers of how many are no longer on the spectrum. I hope with all of my heart that all autistic families find relief. I firmly believe that a PANDAS child can look autistic. I saw my daughter go from a perfectly normal, independent 6 year old to a child who couldn't do anything for herself-she even stopped talking. I was afraid to say it at the time (because I'm not an expert and self-diagnosing is not my thing), but later after she recovered, I asked the school if they thought she looked autistic, and her teacher said yes. I'm eternally grateful that this didn't happen at 15mos or 18mos...who knows what would have been her diagnosis?

 

But to classify PANDAS as a treatable form of autism is just not supported in the literature, and crossing that line is going to cause a lot of physicians who are already sitting on the fence waiting for more "evidence" to pull back and have more reservations about PANDAS/PANS. I'm just a lay person, and by no means an expert in medical ethics, but this feels wrong. Especially if you put it in the context of how many autistic families are preyed upon by practitioners of unproven therapies.

 

Publish the proof before you make the claims, or put in on another page (not prominently displayed on the front) that many families anecdotally have found that their children were mis-diagnosed with autism but there have been no studies to prove it yet. I have no problems with that. PANDAS/PANS has come so far, and making claims that are too broad of what it encompasses without the proof, I'm afraid, may derail it.

[thereishope]

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Edited September 29, 2019 by Vickie

[ChrissyD]

Hello all,

 

I'm new to this forum. My 9 y.o. Son was recently diagnosed with PANS/PANDAS and its been a whirlwind learning process for me. He also was diagnosed with Aspergers/PDD-NOS at age 7 and now we are questioning everything.

 

The immunologist we are currently seeing has a research background in both PANS and immune dysfunction in autism. We are beginning to believe that either our son is in this subset of children with immune dysfunction and autism that develop PANS as a related disorder, or that he was totally mis-diagnosed. Last week he received an IV dose of solumedrol for his flare and for a few days EVERYTHING went away, including all of his autistic traits! Sadly it was only temporary but we are hoping its a sign of things to come. His speech improved, he made eye contact, he was calm & connected and social, and he lost all of his sensory sensitivities. Even his handwriting dramatically improved. It was a miracle to see him change so dramatically.

 

Anyway I'm sorry to hijack this thread. I just wanted to say that the more I learn and research and read, the less I feel I know. Everything we believed to be true about our son for the last two years has been turned upside down. Our family has been in crisis mode ever since but I finally feel like we are going to get our son back.

 

Thank you all for sharing your stories online. I've been lurking here & It has really helped me over the past two months.

[JAG10]

I just wanted to comment that when I mentioned the quote (not sure if it's Dr. Cunningham's), I knew that this could result in some mixed feelings. I'm grateful to be part of a group that can discuss such highly emotional topics as this with a respectful and considerate tone.

 

Although my dd12 was never diagnosed ASD, I have no doubt that at her worst and prior to proper medical treatment, I could have had her diagnosed with Asperger's. Due to my professional experience as an SLP, I knew she was not ASD and thus knew to keep looking, keep searching out medical opinions. ASD is simply a cluster of symptoms that used to have a firm age by which onset needed to occur. That has softened over time, maybe not by the DSM IV, but in practice physicians and psychologists are throwing that label around quite freely.

 

I wonder if the target audience for the website is those not of new onset? Dr. Cunningham's 1000 subjects would be more skewed toward chronic, staler cases, don't you think? I'm only speaking of my own child's experience... that those ASD-like characteristics did not surface until she had been sick for quite some time. My other dd9, also pandas, was treated much younger, sooner and has never exhibited ASD characteristics.

 

I think we can agree that the mentioning of ASD-like behaviors has its place within the PANS/pandas community as well as those things associated with it like Dr. Cunningham's research and test, but that it needs some context that the quote did not provide and that ASD characteristics are not of slogan prominence.

Edited October 26, 2012 by JAG10

[peglem]

I just wanted to comment that when I mentioned the quote (not sure if it's Dr. Cunningham's), I knew that this could result in some mixed feelings. I'm grateful to be part of a group that can discuss such highly emotional topics as this with a respectful and considerate tone.

 

Although my dd12 was never diagnosed ASD, I have no doubt that at her worst and prior to proper medical treatment, I could have had her diagnosed with Asperger's. Due to my professional experience as an SLP, I knew she was not ASD and thus knew to keep looking, keep searching out medical opinions. ASD is simply a cluster of symptoms that used to have a firm age by which onset needed to occur. That has softened over time, maybe not by the DSM IV, but in practice physicians and psychologists are throwing that label around quite freely.

 

I wonder if the target audience for the website is those not of new onset? Dr. Cunningham's 1000 subjects would be more skewed toward chronic, staler cases, don't you think? I'm only speaking of my own child's experience... that those ASD-like characteristics did not surface until she had been sick for quite some time. My other dd9, also pandas, was treated much younger, sooner and has never exhibited ASD characteristics.

 

I think we can agree that the mentioning of ASD-like behaviors has its place within the PANS/pandas community as well as those things associated with it like Dr. Cunningham's research and test, but that it needs some context that the quote did not provide and that ASD characteristics are not of slogan prominence.

Okay, I'll buy that! I found it strange that the quote was so prominent and yet, its the only place on the sight that autism is mentioned.

[peglem]

Something else occurred to me- Its a nice reach out to those who might otherwise just accept an autism dx as the final word on their child's condition. Couldn't hurt to check on the neuroimmune angle if you do have an autism dx.

Edited October 26, 2012 by peglem

[sf_mom]

Here are the results of our three children CAM Kinanse and their presentation. I was extremely grateful for CAM Kinase results as my DD was 2 1/2 at the time and had regressed to one word of 'up' and consider to have Velcro Syndrome by predominate children's hospital (wanted to be up and in our arms, very clingy). It provided us with the information that something was potentially wrong at such a young age. She is being treated for Lyme Induced Autism and has made huge strides towards recovery. She still has language regression when herx'ing of grunting, pointing, talks with lisp and slurs words but for the most part is meeting all her age appropriate bench marks at 5 1/2 years.

 

DS1: CAM Kinase: 135 (taken shortly after steroid burst), elevated anti-neuronals, sudden on-set after vaccination, strep illness and exposure to child with full body rash all within three week period. Predominate TIC presentation

 

DS2: CAM Kinase: 148, elevated anti-neuronals, no sudden on-set, rage behavior, OCD, sensory issues, Aspergers tendencies, heart related issues including aneurysm's (aneurysm developed in days after exposure to strep illness and getting sick). 2 1/2 years old when CAM Kinase was done

 

DD: CAM Kinase: 159, NO elevated anti-neuronals, no sudden on-set, no OCD or TICS, speech regression, high anxiety, mood liability, suddenly lost weight and muscle tone. 2 1/2 years old when CAM Kinase was done

 

All have a high viral load specifically Coxsackies (older son had Coxsackies when I was about 34 weeks pregnant with twins and I got sick as well but had no obvious sign of Coxsackies with mouth or facial sores), HHV6, EBV, Lyme, Babesia, Bartonella.... only our oldest son had strep titers and have come down with treatment.

 

Those test results saved my younger two children from so much worse... Thankfully we stopped vaccinating at time due to results.

Edited October 26, 2012 by SF Mom

[WorriedDADNMOM]

For me, I am not too concerned with the ASD/Pandas/Pans implied link.....however..........Could this all be the same thing, just different timelines(ages) for each and everyone of us????? Vaccinations, infections, messed up guts, overwhelmed immune systems, ........thus all the issues/similarities. I don't know but I wonder. Just am trying to keep getting our kiddos well. Only reason I say this is I have one kiddo of each......slow slide over time with all the classic Aspie stuff (no diagnosis) then Pandas and other kiddo 200% normal model kid with known infections then sudden onset psych issues.

[Kiera]

For me, I am not too concerned with the ASD/Pandas/Pans implied link.....however..........Could this all be the same thing, just different timelines(ages) for each and everyone of us????? Vaccinations, infections, messed up guts, overwhelmed immune systems, ........thus all the issues/similarities. I don't know but I wonder. Just am trying to keep getting our kiddos well. Only reason I say this is I have one kiddo of each......slow slide over time with all the classic Aspie stuff (no diagnosis) then Pandas and other kiddo 200% normal model kid with known infections then sudden onset psych issues.

I agree! Dr T believes Pandas research IS autism research! It provides a glimpse into the autism world and may provide the answers, he said all this on one of his radio/blog shows! The explosion of "autism" is all immune/gut dysfunction and depending on age of onset and various other factors, depends on where on the spectrum you fall. There still are "classic" cases of autism, but these are few and far between. The bulk of them start out normal and regress into autism in the early years.

[ChrissyD]

For me, I am not too concerned with the ASD/Pandas/Pans implied link.....however..........Could this all be the same thing, just different timelines(ages) for each and everyone of us????? Vaccinations, infections, messed up guts, overwhelmed immune systems, ........thus all the issues/similarities. I don't know but I wonder. Just am trying to keep getting our kiddos well. Only reason I say this is I have one kiddo of each......slow slide over time with all the classic Aspie stuff (no diagnosis) then Pandas and other kiddo 200% normal model kid with known infections then sudden onset psych issues.

I agree! Dr T believes Pandas research IS autism research! It provides a glimpse into the autism world and may provide the answers, he said all this on one of his radio/blog shows! The explosion of "autism" is all immune/gut dysfunction and depending on age of onset and various other factors, depends on where on the spectrum you fall. There still are "classic" cases of autism, but these are few and far between. The bulk of them start out normal and regress into autism in the early years.

[ChrissyD]

Interesting conversation. When my son's flare hit I described it as his autistic traits on crack. Every quirk he ever exhibited was multiplied 1000x overnight. And his prior, milder episode last spring, when he started OCD tapping of his fingers and feet and head movements, we attributed to autistic 'stimming' even though he never stimmed before. There is so much overlap I think that's what delayed his diagnosis. I feel like such a bad mom now for missing the obvious signs and blaming everything on 'Aspergers'

[peglem]

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.

It has been changed to:

“Compassionate testing for PANDAS/PANS which is a treatable neurologic condition often associated with Autism Spectrum Disorder”

[Iowadawn]

I am glad to see that change. That statement made me shutter when it was originally put up on her website, mainly because I thought it could be used against the PANS/PANDAS cause. This is much more accurate.