How many here also have an Autism diagnosis?

[airial95]

My son was only 20 months when he had his first onset. And I have to admit, if we didn't have a very astute and observant pediatrician, I'm sure we would've been told he was autistic. Many of the behaviors do overlap - especially in young children, when one doesn't really think of the strep connection yet. (most still associate PANDAS with onset between 3-8, although many of us know better).

 

Because our pediatrician knew our kids so well, he knew that my son's issues were a sudden change. He was speaking in full, clear sentences (even using proper pronouns) at 18 months, and then suddenly he could only speak in short, single syllable bursts if at all. Our dr knew that this wasn't a developmental "delay" since the skills were there at one point. That's one of the things that helped him connect to PANDAS.

 

But many other doctors - especially those in larger practices where the dr you see isn't always the same one - might have very easily gone ASD with us. For several months after our PANDAS dx, our ped was still a bit worried about the potential for Aspbergers - he fit those characteristics to a T - but was too young for a clear dx. The longer he's been on the PANDAS tx, the less and less Aspberger-like he is getting.

[Stephanie2]

OK, here is my opinion - warning: LONG!

 

I know that some on this forum totally disagree with me on this, but having two boys with autism (one fully recovered except for speech apraxia) and both having pandas, and having been involved with 3 DAN doctors over 2 years I have learned a lot about all of this...although, I still don't know if I can coherently explain it! (and i know one of my former DAN docs at times browses this forum and if he reads this he will probably burst out laughing at my feeble attempt LOL! you know who you are. now that I think about it my current DAN goes on here as well...)

 

Most children with autism have several underlying conditions putting them on the spectrum: detoxification pathways are malfunctioning (methylation-transulfuration issues), autoimmunity (not just pandas, but other autoimmune conditions affecting the brain), underlying infections (lyme, etc.), mitochondrial dysfunction (the mito. of the cell cannot utilize energy properly, including brain cells), and especially gut issues (with our without constipation/diarrhea) leading to food intolerances, malabsorbtion, malnutrition, maldigestion, yeast and bacteria overgrowth (I'm sure there is much more to this - I'm going off the top of my head here).

 

Some children have ALL of these issues going on all at once, some only have a few or even one. MY boys have ALL of these to some degree. In addressing each of these areas, we are "cleaning up" the body and allowing it to work properly over time and the child looks less "spectrum-y". My boys are each on 20-25 supplements per day in order to address each of these areas - and I can tell you that IT WORKS! My once severe 2 year old acts completely neurotypical (unless he gets pandas, a gut infection or misses his supplements for a few days - sigh - so it is a constant "upkeep" at the moment).

 

My point to all this is that SOME of us on this board only have the autoimmunity issue, so the problems in the body are not severe enough to push us over into autism. Others of us may have autoimmunity and some gut issues. And some may have all of it, therefor the child requires MUCH more upkeep than just a pandas child (and not to mention, treating pandas with antibiotics can actually worsen autism if not done properly and minimally). It's much more complicated than this, but I have a schedule to keep here!!

 

So, in my opinion, a child who's pandas makes them "autistic" and the autism features do not lift when the pandas remits, then there is MORE GOING ON than just pandas.

 

Not to mention, if there are underlying mitochondrial issues going on and an infection (strep, lyme, virus, yeast, etc) moves in and the mitochondria shut down, the child is going to move further onto the spectrum, which is why it is so important for the mito to be addressed (think Hannah Poling, first person to win autism-vaccine case due to mito dys and vaccines causing immediate regression).

 

Unfortunately, many of these allopathic physicians that most pandas kids are seeing do not address anything besides the autoimmunity issue (and not thoroughly, at that) and it makes me wonder if some of these "resistant" pandas cases would do well to see a DAN doctor who SPECIALIZES in pandas and has a PROVEN track record...

 

[butterflymom]

=

Edited October 5, 2015 by tampicc

[PhillyPA]

tampicc, I have heard of children being diagnosed for autism at age 5. Meaning that they have had it a long time and then before kindergarten or during kindergarten got evaluated and received an official diagnosis. But, you do not hear of perfectly normal developing 5 year olds developing regressive autism. If you know of a few people whose children developed regressive autism at age 5 - that is a huge deal. Five year olds do not get autism. It is always something else.

[thereishope]

My son had 3 PANDAS exacerbations at 5 years old. By the third one, he had to be screened for autism, along with other things. Thankfully, by the time our long awaited appointment came up, he had recovered from PANDAS more and no longer was a concern. The friends with late onset autism need to search even harder for answers.

 

 

I would like to share that in the last year, while trying to find out what was going on with my 5 year old, I often googled "intermittent mild autism", "Aspergers sometimes", and "ADHD after getting sick". I joined a TACA (Talk About Curing Autism) playgroup and tried the GFCF diet, but felt it wasn't really the right path. I believe my child is only dealing with PANDAS, but that if he was evaluated at the height of an exacerbation, someone might diagnose him with ADHD or Aspergers. He is a perfectly normal, social, very bright child when not affected by PANDAS. He had no diagnosis until last month (PANDAS diagnosed by me, the mother, then confirmed with Dr. K).

 

This is all very interesting, and I wonder what might come of possible autism treatments when more doctors realize that infection can trigger neuropsychological symptoms. I am certain there are multiple factors in autism, and I respect the biomedical approaches, but it is very interesting how the infection-triggered symptoms that our children have resemble autistic traits.

 

BTW, I keep meeting people at TACA who say they have kids who developed autism late, after age 5, or who have OCD or Tourettes, or Aspergers with tics. I don't know if it is my place to suggest that their child could be helped with antibiotics or steroids, because they are so into the biomedical path and against medicines. I've been really troubled by this, and was thinking of offering to give a presentation on PANDAS to my local TACA group. Don't know if they would want it, or how that would go over. Most of them have never heard of it.

 

Any of you ever thought of presenting a PANDAS talk somewhere?

Edited October 29, 2010 by Vickie

[NancyD]

A large percentage of children with ASD have underlying immune, GI, and/or metabolic conditions. So that begs the question, which came first? In my OPINION, a compromised immune system may indeed be at the heart of the ASD diagnosis for so many children.

 

I have been training physicians, NPs, and clinicians for nearly 10 years how to recognize the early signs of ASD and for the past 5 years I have included PANDAS in my presentations. In addition to the behavioral signs I talk about the medical signs -- strep throat, red ears, circles under the eyes, GI problems, tics, OCD, etc. And when I counsel parents I always start with the medical signs. I can't tell you how many children with ASD ended up having PANDAS.

 

If it weren't for heading down the DAN path over 11 years ago my DD would probably still be on the autism spectrum. Neither Dr. L nor Dr. B could believe their eyes when I told them my DD was diagnosed with mild to moderate autism almost 13 years ago. They could not see a shred of ASD left.

[Megs_Mom]

Our dd is not on the spectrum, but I was amazed at how many overlapping symptoms she suddenly had in common with my good friend's son, who was diagnosed with Asperger's. She could not look adults in the eye, OCD, SID - we went to the same OT. She is very bright, and outgoing, but suddenly had social issues, phobia's, regressed socially, etc. I had a new understanding and empathy of what parents of children with autism must feel when their young child suddenly changes.

[peglem]

I keep hearing people talk about "overlapping" symptoms. People, autism is all symptoms...it is defined only by symptoms and nothing else. If you have the symptoms to meet the "diagnostic" criteria- you have autism. Maybe those symptoms (the autism) are caused by autoimmunity, maybe by toxins, maybe by brain damage, etc. I feel very strongly that people, especially physicians, need to stop looking at autism as a true dx, and start looking for what is causing the symptoms they call autism.

[jjl]

I keep hearing people talk about "overlapping" symptoms. People, autism is all symptoms...it is defined only by symptoms and nothing else. If you have the symptoms to meet the "diagnostic" criteria- you have autism. Maybe those symptoms (the autism) are caused by autoimmunity, maybe by toxins, maybe by brain damage, etc. I feel very strongly that people, especially physicians, need to stop looking at autism as a true dx, and start looking for what is causing the symptoms they call autism.

 

Amen! My earlier post on this thread was about how I hate the label (or diagnosis as some say) of autism. It reads as a purely psycological diagnosis. This label points to nothing medical. If more docs and parents would follow what you say about what is causing the symptoms, then people would find underlying causes. For expl, our older son has many symptoms that indicate autism, but they overlap with PANDAS like many. PANDAS is easier to address purely from the standpoint that the name implies a place to address, the immune system. I always try to ask the question why for every symptom and if you follow the trail long enough, you will get to things like the immune system or mito or metals, etc. Two years ago when our son's exacerbations started and the strep tests were negative, I was told by many it could not be PANDAS, so we wasted two years of on and off exacerbations. And of course we treated for numerous things to relieve symptoms, none of which worked. The main reason I love this forum is that people cared enough to ask the right questions and put out the truth. And now many children with autism will have a chance to address a core issue. JJL

[thereishope]

So, when parents say their child showed "autistic qualities" during an exacerbation, should they instead say their child had autism during an exacerbation? If we said that to moms of autistic children (I know you are one, but I mean others who are don't understand PANDAS), would they take offense to us comparing our children to theirs? Do we say our children not only recovered from PANDAS, but "short lived" autism as well? I'm curious to know this and how to explain this. I understand what you mean, Peg, but I just don't know how to word it.

 

I keep hearing people talk about "overlapping" symptoms. People, autism is all symptoms...it is defined only by symptoms and nothing else. If you have the symptoms to meet the "diagnostic" criteria- you have autism. Maybe those symptoms (the autism) are caused by autoimmunity, maybe by toxins, maybe by brain damage, etc. I feel very strongly that people, especially physicians, need to stop looking at autism as a true dx, and start looking for what is causing the symptoms they call autism.

[Kayanne]

So, when parents say their child showed "autistic qualities" during an exacerbation, should they instead say their child had autism during an exacerbation? If we said that to moms of autistic children (I know you are one, but I mean others who are don't understand PANDAS), would they take offense to us comparing our children to theirs? Do we say our children not only recovered from PANDAS, but "short lived" autism as well? I'm curious to know this and how to explain this. I understand what you mean, Peg, but I just don't know how to word it.

 

I keep hearing people talk about "overlapping" symptoms. People, autism is all symptoms...it is defined only by symptoms and nothing else. If you have the symptoms to meet the "diagnostic" criteria- you have autism. Maybe those symptoms (the autism) are caused by autoimmunity, maybe by toxins, maybe by brain damage, etc. I feel very strongly that people, especially physicians, need to stop looking at autism as a true dx, and start looking for what is causing the symptoms they call autism.

I like to say that my daughter "had OCD so bad that it shut her down so that she looked autistic" -- not that she had autism.

[peglem]

So, when parents say their child showed "autistic qualities" during an exacerbation, should they instead say their child had autism during an exacerbation? If we said that to moms of autistic children (I know you are one, but I mean others who are don't understand PANDAS), would they take offense to us comparing our children to theirs? Do we say our children not only recovered from PANDAS, but "short lived" autism as well? I'm curious to know this and how to explain this. I understand what you mean, Peg, but I just don't know how to word it.

 

I keep hearing people talk about "overlapping" symptoms. People, autism is all symptoms...it is defined only by symptoms and nothing else. If you have the symptoms to meet the "diagnostic" criteria- you have autism. Maybe those symptoms (the autism) are caused by autoimmunity, maybe by toxins, maybe by brain damage, etc. I feel very strongly that people, especially physicians, need to stop looking at autism as a true dx, and start looking for what is causing the symptoms they call autism.

Oh, just call it PANDAS! Or, autistic symptoms works for me too. Heck, its your kid, call it whatever you want! My point was really that all "autism dx's" are just neurological symptoms, and the label is not diagnostic. I tried to avoid my big rant about the implications (medically and educationally) of autism as a "diagnostic" label. I don't want to get into what is politically correct (I don't even begin to know)- I just think it is a bad idea (based on my experience) to refer to autism as a diagnosis. I really think this is true of most psychiatric conditions. It angers me when patients are sent to psychiatrists simply because other physicians are not able to figure out what's really wrong with the patient. I think the only way to turn this practice around is for people to change the way they think about and talk about autism and other labels for neurological symptoms.

[thereishope]

SOT it is!

 

 

Heck, its your kid, call it whatever you want!

[peglem]

SOT it is!

 

 

Heck, its your kid, call it whatever you want!

[peglem]

Kaki, I apologize for taking your thread in another direction. I understand your questioning the connection between autism (symptoms) and PANDAS. Obviously, I do believe there is a connection.