peglem Posted October 16, 2010 Report Posted October 16, 2010 My take on this.... If your child has all the characteristics to qualify for an autism diagnosis, then they are autistic. I think the problem is that autism is considered a diagnosis at all- regardless of age of onset. Diagnostic criteria is just a description of symptoms...that's all. Just because a cause for those symptoms is discovered, doesn't change the fact that they do have or have had those symptoms. I'd like to see "autism" become a clue for doctors to look for underlying medical causation, instead of an excuse to withhold medical treatment.
P_Mom Posted October 16, 2010 Report Posted October 16, 2010 My take on this.... If your child has all the characteristics to qualify for an autism diagnosis, then they are autistic. I think the problem is that autism is considered a diagnosis at all- regardless of age of onset. Diagnostic criteria is just a description of symptoms...that's all. Just because a cause for those symptoms is discovered, doesn't change the fact that they do have or have had those symptoms. I'd like to see "autism" become a clue for doctors to look for underlying medical causation, instead of an excuse to withhold medical treatment. Well said, Peg!!!!!!
Jtsmama Posted October 30, 2011 Report Posted October 30, 2011 My son was being treated by his Neuro for 2yrs, when I our Immuno suggested we see Dr M. She diagnosed him as Tourettes, ocd, and hf autism. After dealing with get for a year, we no longer see her. Our Neuro is still treating him for Pandas, and said Autism he is not, just part if the Pandas package. He did not present with those symptoms til age 7, it sure doesn't happen overnight!
MomWithOCDSon Posted October 30, 2011 Report Posted October 30, 2011 Pandas16 -- I'm trying to understand your line of inquiry here. As I recall on a previous thread, you were pretty unhappy with the suggestion that some kids diagnosed with ASD may actually have had PANDAS . . . didn't want the two conditions "bundled," for lack of a better word. Would that be an accurate impression? But many of us do have kids who, especially during exacerbation, were diagnosed with things like high functioning autism or Aspberger's or PDD-NOS, another diagnosis that's part of the autism spectrum, only to have those behaviors all but disappear or entirely disappear with PANDAS treatment. So, is that just a coincidence? Since "autism" isn't anything but a diagnosis of last resort based upon what a child doesn't have, a description of a set of behaviors currently inexplicable by any other known cause, why is it unthinkable that autism's roots might be in auto-immunity, also? What am I missing here?
tpotter Posted October 30, 2011 Report Posted October 30, 2011 My take on this.... If your child has all the characteristics to qualify for an autism diagnosis, then they are autistic. I think the problem is that autism is considered a diagnosis at all- regardless of age of onset. Diagnostic criteria is just a description of symptoms...that's all. Just because a cause for those symptoms is discovered, doesn't change the fact that they do have or have had those symptoms. I'd like to see "autism" become a clue for doctors to look for underlying medical causation, instead of an excuse to withhold medical treatment. Autism develops early on....if u develop autistic like symptoms later you don't have autism.... Autism doesn't necessarily develop early on. Autism is really just a set of symptoms: language, sensory and social skill deficits, and a person can have any amount of any of those combined (there needs to be all 3 to make the dx.) That being said, some kids appear to be "born" with it, and some kids don't get it until "later". (The kids who are born with it, probably just have responded in-utero to something that got passed down.) It has been commonly accepted that some kids regress at about 18 months, and then it's called Autism, as well, but honestly, I've never heard of a child developing it at 5 years old. And now that I've been part of this whole thing (with one of my children diagnosed with Asperger's Syndrome to turned out to have PANDAS, ANNNND...social skills jumped 6 - 7 years overnight with IVIG treatment....I seriously have to question the whole issue of Autism. Personally, I think it is an immune disorder that causes inflammation in the brain, and that there can be all kinds of causes...including infection.
cab40 Posted October 30, 2011 Report Posted October 30, 2011 (edited) hmmm interesteing topic... Edited March 23, 2012 by cab40
cab40 Posted October 30, 2011 Report Posted October 30, 2011 My take on this.... If your child has all the characteristics to qualify for an autism diagnosis, then they are autistic. I think the problem is that autism is considered a diagnosis at all- regardless of age of onset. Diagnostic criteria is just a description of symptoms...that's all. Just because a cause for those symptoms is discovered, doesn't change the fact that they do have or have had those symptoms. I'd like to see "autism" become a clue for doctors to look for underlying medical causation, instead of an excuse to withhold medical treatment. Autism develops early on....if u develop autistic like symptoms later you don't have autism.... Autism doesn't necessarily develop early on. Autism is really just a set of symptoms: language, sensory and social skill deficits, and a person can have any amount of any of those combined (there needs to be all 3 to make the dx.) That being said, some kids appear to be "born" with it, and some kids don't get it until "later". (The kids who are born with it, probably just have responded in-utero to something that got passed down.) It has been commonly accepted that some kids regress at about 18 months, and then it's called Autism, as well, but honestly, I've never heard of a child developing it at 5 years old. And now that I've been part of this whole thing (with one of my children diagnosed with Asperger's Syndrome to turned out to have PANDAS, ANNNND...social skills jumped 6 - 7 years overnight with IVIG treatment....I seriously have to question the whole issue of Autism. Personally, I think it is an immune disorder that causes inflammation in the brain, and that there can be all kinds of causes...including infection.
peglem Posted October 30, 2011 Report Posted October 30, 2011 If autism was an autoimmune disorder than wouldnt ivig would cure them....clearly your kid didn't have autism then......just autistic like symptoms... Well, I don't think IVIG is by and large a cure for autoimmunity. That being said, PANDAS seems to disrupt the same neural pathways that are affected in autism. Treatment that addresses autoimmunity in autism (if that is the root) addresses the autoimmune problem, but it does not correct faulty development. Children who had normal development(built regular neural pathways) and then are stricken with autistic like symptoms have those developmental pathways in place for when they recover and often are able to pick up where they left off. But, if a child is stricken w/ the autoimmunity before the normal developmental pathways are built they develop abnormal pathways as a result of the disruption and have no "normal" to fall back on. This is my theory, based on what I have learned about child development and what happens in PANDAS. I do think my child's autism was caused by an unrecognized, untreated immune problem that began in infancy or maybe even in utero.
cab40 Posted October 30, 2011 Report Posted October 30, 2011 I KNOW this is what happned to my son. But it CAN'T (I am just saying this b/vc Ihave to be hopeful)mean he can't be helped can it? Esp if he has immune deficiency? He was sticken before age 5, I blieve his neuropathways were disrupted. He has an ABN EEG right post temp lobe slowness asleep and awake.. I am just tryign to figure out what to so, wherre to put the eggs in a basket.......C
beeskneesmommy Posted October 30, 2011 Report Posted October 30, 2011 First signs of Autism start to show up beween 18 months and 3 years. Diagnostic criteria (DSM IV) is as follows: http://www.autreat.com/dsm4-autism.html http://www.nimh.nih.gov/health/publications/autism/complete-index.shtml I truly believe that there are likely many kids with PANDAS out there who are being incorrectly diagnosed with Autism. I believe that there is a strong possibility that at least one of them may have even crossed my desk in the 1990's while I worked as a clinician in an inpatient unit at a children's psychiatric hospital. When my son, who is not Autistic, experienced his acute onset of PANDAS, he went from healthy, typical, age appropriate behavior and highly verbal to being deeply withdrawn, rocking, finger ticcing and a plethora of other symptoms that looked for all the world to me to be severe Autism. Then he came back. That is not Autism. I have a hard time believing that a 5 year old with no previous symptoms on the ASD could "become" Autistic. I do, however, think it is highly possible that a practitioner would diagnose a child this age with Autism if he/she had not known the child prior to the PANDAS onset. I also believe that there is a tendency for many medical and MH practitioners to disbelieve the parents' reports and dismiss them as "wishful thinking" or not being realistic. Basically, there is a trend of over riding parents and insisting upon long term diagnostic history based upon what is currently observed, discounting parents opinions and historical reporting.
MomWithOCDSon Posted October 30, 2011 Report Posted October 30, 2011 I feel like with autism, you don't turn out okay with pandas maybe its possible...thats why I don't think the two should be mixed together......plus auism is a developmental disorder... pandas just autoimmune.....unless it interferes with critical development and other circuits don't form correctly....like peglem suggested Some kids with high-functioning autism do, in fact, "turn out okay." Aspberger's especially. I agree with you and Peg that the timing is crucial . . . and probably the duration that the child "lives" with whatever onslaught is happening to their brain without infectious disease or auto-immune interventions greatly impacts what happens developmentally. To be frank, I have a heartfelt concern that the same may be said of some cases of PANDAS. I think my son was suffering from his outsized auto-immune response to strep for the better part of 8 years before we knew it and began to treat it. So he was diagnosed with OCD 3 years into that timeframe, and I suspect his brain has, as you and Peg have noted, built certain pathways to contend with that anxiety condition. So now, even though we appear to have gotten the auto-immune issue in much better hand, he still struggles with some OCD behaviors that may literally be "ingrained" and therefore very difficult to dispel. I see him continue to make gains, but he is, effectively, years behind where he should be in that regard. It stinks. Role of Autoimmunity in Autism
cab40 Posted October 31, 2011 Report Posted October 31, 2011 I feel like with autism, you don't turn out okay with pandas maybe its possible...thats why I don't think the two should be mixed together......plus auism is a developmental disorder... pandas just autoimmune.....unless it interferes with critical development and other circuits don't form correctly....like peglem suggested Some kids with high-functioning autism do, in fact, "turn out okay." Aspberger's especially. I agree with you and Peg that the timing is crucial . . . and probably the duration that the child "lives" with whatever onslaught is happening to their brain without infectious disease or auto-immune interventions greatly impacts what happens developmentally. To be frank, I have a heartfelt concern that the same may be said of some cases of PANDAS. I think my son was suffering from his outsized auto-immune response to strep for the better part of 8 years before we knew it and began to treat it. So he was diagnosed with OCD 3 years into that timeframe, and I suspect his brain has, as you and Peg have noted, built certain pathways to contend with that anxiety condition. So now, even though we appear to have gotten the auto-immune issue in much better hand, he still struggles with some OCD behaviors that may literally be "ingrained" and therefore very difficult to dispel. I see him continue to make gains, but he is, effectively, years behind where he should be in that regard. It stinks. Role of Autoimmunity in Autism
cab40 Posted October 31, 2011 Report Posted October 31, 2011 so sad. I feel my son is one of those that got hit before his brain was fully developed. He is every bit ASD. But I have to have hope somehow we can find someone someway to disprove that; that he can heal. he was hit very young. And we did not know until now about an immune deficiency. So sad. Did NOT have to be. Kids should be screened for these things; certianly not ignored when parents try to find answers from their "docs." I feel culpable too. But al lthis research is killing me and cutting into my time with them...its a very fine line for me. I have to fidn answers for him. I remember who he was. I can see it in his pictures 4 years ago......
kthomas Posted October 31, 2011 Report Posted October 31, 2011 Dr. Beck's book on the 4 A Disorders - Autism, ADHD, Asthma, and Allergies has some PANDAS case stories in it. You might find his insight on the topic helpful as you look for answers to your son's condition. I read this book about two months ago and have adopted some of his recommendations on anti-inflammatory supplements. We have been struggling for almost a year now with PANDAS symptoms.My DS7 was just put on antibiotics this past week. We went from doctor to doctor looking for someone who would listen and knew about PANDAS and have finally found a doctor that is working with us.
Ozimum Posted October 31, 2011 Report Posted October 31, 2011 (edited) Hi cab40, Have you heard of the DAN! doctors? Dr Kenneth Bock is a DAN! dr - Defeat Autism Now! (and I too can recommend his book. )The DAN! Drs are a loose group of doctors supporting parents trying to find helpful treatments for their autistic kids and they pooled their knowledge, including on PANDAS. In Australia we've been very lucky to have wonderful Biomed doctors visit from the USA to train our Biomedical practitioners. A DAN! (or Biomed) doctor has helped us enormously. If you haven't yet found a dr, I suggest you visit the Autism Research Institute and check out their listing - Like everything, there are good ones and some not so good, so be prepared to shop around. I don't know if there's anyone in your state, but the ARI website might be a good place to start. Good luck. As to what came first - PANDAS or Aspergers I can't say, but I'm watching the "Aspergers" (PANDAS?) stuff steadily peel away as we continue with Biomed protocols and I'm hoping that sometime in the future that diagnosis will no longer apply. What residual stuff we'll end up I cannot guess, but my son has his "happy" back! Yay! And he's doing well...normal teenage behaviour here mostly. He still gets strep but we're managing it so far. Edited October 31, 2011 by Ozimum
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